ENHANCING ETHICAL PRACTICE IN
PRENATAL SCREENING: FACILITATING
WOMEN’S ETHICAL CHOICES
by
Eleanor Milligan
BA (Hons-1st), Grad Dip Ed, BSc, ADAS (Chem)
Queensland University of Technology
Thesis is submitted in the Humanities Research Program, Queensland
University of Technology, in fulfilment of the requirement for the
degree of Doctor of Philosophy.
2008
2
3
Declaration
The work contained in this thesis has not been previously submitted to
meet requirements for an award at this or any other higher education
institution. To the best of my knowledge and belief, the thesis contains
no material previously published or written by another person except
where due reference is made.
_____________________________________
Eleanor Milligan
_____________________________________
Date
4
Acknowledgments
In the Village
0H 0F
1
There is an old Greek proverb which states ‘It takes a village to raise a child’. It
occurs to me as I reach the end of this project that, similarly, it also takes a village to
write, or raise, a PhD thesis. I have been blessed to live this PhD journey in a village
filled with an abundance of compassion, support and encouragement, overflowing
with intellectual and individual generosity and guidance.
My ‘village’ has been inhabited by many generous mentors, most notably Dr Peter
Isaacs, co-founder of the Applied Ethics Program at QUT, who had the wisdom and
grace to simply listen when I stumbled into his office five years ago as a
disenfranchised scientist, questioning the ethical ramifications of the ‘technological
imperative’. He gently challenged my scientifically embedded ways (which I didn’t
know I had!) and gifted me with the tools to navigate the seemingly overwhelming
ethical terrain in alternative and more insightful ways. The conditions for my
flourishing began to take hold that day. My deepest thanks to you Peter; you have
helped to illuminate to me the destructive myth of rational objectivity that
impoverishes and obscures so much of our human understanding and potential. I
remain profoundly indebted to you. To Dr Astrid Gesche, thank you for having the
confidence to support me during my various ‘distractions’ over the past three years,
while gently reminding me that I had a thesis to write. Your tender tenacity and
commitment to polish any ‘rough edges’ are certainly reflected in this work and it is
a more considered piece of scholarship as a result of your input. My sincere
gratitude to you Astrid.
1 Image from website of Milliken University (www.millikin.edu)
5
It is rare in a working life to experience that almost magical synergy that comes
from working with dynamic, spirited and passionately focussed colleagues – to my
fellow postgraduate colleagues Jenny Jones and Emma Woodley, thank you for co-
creating this energising environment with your sharp intelligence and curious minds.
We have challenged each others understandings, raised each other up and
maintained a fierce sense of belief in actualising our own and each others
possibilities. It has been an absolute privilege to work with you. From Dr David
Massey, I have learned much about living the ethical life, as opposed to theorising
about one. Thank you David for continuing to inspire by gentle example.
To Professor Daryl Pullman of Memorial University, Newfoundland, Canada, I owe
a tremendous debt of gratitude. From our initial meeting in 2005, your unconditional
generosity, openness and inclusiveness, your willingness to guide and support
through sharing your vast practical experience and insights have opened so many
doors intellectually, practically and personally. My most sincere thanks to you
Daryl.
At times the expectations and hopes from myself and others have seemed almost
insurmountable and I hope this thesis will do justice to those who have invested so
much of themselves in it. My sincere gratitude goes to each of the participants in
this study who gave so generously of their time, but perhaps more importantly of
themselves, their identities and understandings, their hopes, values, commitments
and frailties. Thank you for having the courage to lay those most private concerns
bare, to be picked over, dissected and scrutinised by someone you barely knew. I
hope I have done your trust in me justice. Regardless of their particular perspectives,
they each came to this project in a spirit of trust and collaboration with the honest
intention of contributing to better understandings, to guide more ethically responsive
practices for the future.
It was never the purpose of this study to pathologise, blame, or pit various
stakeholders ‘interests’ competitively against the other and I hope this study will
never be interpreted that way. It was my greatest hope at the outset to bring the
6
various perspectives together, and engage in genuine dialogue to illuminate and
enhance mutual understandings. Negotiating practice and policy change may then be
approached from a position of genuine appreciative understanding, and this is surely
of potential benefit to all stakeholders. As you read this thesis, you will be the
ultimate judge of whether this has been achieved.
Finally, thanks to my family. To David, my husband of twenty one years (I suppose
that means our marriage has come of age!) - Thank you. There have been countless
times when my absence (physical and mental) has placed extra responsibilities on
your broad and capable shoulders, but you have always strongly defended my
commitment to realising the goals of this research and graciously valued their
importance. I am so grateful to you for your part in helping me embrace this
opportunity. To our three children Claire, James and Grace, your presence in my life
opened a world of possibilities and questions. You fill me with optimism for the
future and joy for the present; I trust that as you grow you will gain a sense of why I
felt this work was important, and embrace the imperative of ethical reflection in
shaping the future that you will inherit.
7
Abstract Informed consent, based on patient autonomy, is seen as necessary if medical
interventions are to be seen as legally and ethically acceptable. While ‘informed
consent’ protocols within antenatal care, including prenatal screening regimes are
presumed to be robust, emerging research outside of Australia suggests most women
do not adequately understand the medical purpose, limitations or potential ethical
implications, such as selective termination, of the medical procedures ‘consented’ to.
While the consent given in these situations may well fulfil the minimal legal criteria
for informed consent, the required level of knowledge and understanding necessary
to meet the ethical standards informed or understood consent often appears not be
met. The presumption that legally informed consent equates to morally informed
consent inherent within institutional protocols for screening must therefore be
questioned, and the ethical integrity of these increasingly routine interventions
demand further scrutiny.
The purpose of this research was to explore whether the problems identified in
research overseas might also exist locally. Underpinned by a phenomenological
philosophical approach to understanding the ethical dimensions of clinical practice,
the research sought to engage with a small cohort of mothers and practitioners
locally. The study adopted a qualitative narrative methodology, analysing individual
in-depth interviews using the Listening Guide (Gilligan et al, 2003). The
experiences of mothers and health practitioners interviewed exposed a range of
institutional, social, personal and philosophical constraints that mirrored the
overseas research findings and also illuminated how informed consent may be
unintentionally undermined in the clinical setting.
A positive outcome of the study was that it provided a locally informed and
contextually sensitive basis from which to strengthen existing organisational
informed consent protocols and thus support women’s ethical decision making. As
the process of becoming ‘informed’ to consent is largely educational, promoting
patient learning in the clinical context is an ethical imperative. However, there
seems limited awareness at either the clinical or theoretical level of the critical link
between patient education and ethically robust medical intervention. Hence a
8
significant contribution of this research was to explore this underdeveloped but
practically important link.
As the process of gaining informed consent has far reaching applications across a
broad spectrum of medical interventions, the contextual and educational insights
offered throughout this research may have significant relevance beyond the
immediate context of this research.
Keywords: Ethics, Prenatal Screening, Informed Consent, Education
9
TABLE OF CONTENTS
Acknowledgements…………………………………………………………………..4
Abstract………………………………………………………………………………7
Prelude……………………………………………………………………………...14
Overview of Thesis…………………………………………………………………18
SECTION A
LAYING THE FOUNDATIONS
CHAPTER ONE – INTRODUCTION…………………………………………….23
Situating Prenatal Screening – Exploring Contexts………………………………..23
Research Questions and Scope…………………………………………………….34
Chapter Summary………………………………………………………………….38
CHAPTER TWO – AN ETHICAL ORIENTATION
Introduction…………………………………………………………………………41
Comparing Ethical Perspectives
Ethics as Philosophy – Epistemology and Ways of Rational Knowing……46
Analytical Philosophy and Science: Expert Outsiders Mutually
Reinforcing the Technological Imperative…………………………53
Ethics as Embedded and Transformative - Re-humanising
and Re-contextualising the Ethical Agenda………………………………..56
Recovering Ontology at the Core of Medical Ethics………………………………57
An Applied Ethics Framework for Research………………………………………59
Narrative and Ethics ……………………………………………………………….63
The Moral Significance of Narrative………………………………………63
Why Ethics? .................................................................................................65
Chapter Summary………………………………………………………………….68
10
CHAPTER 3 – RESEARCH THROUGH VOICE: A METHOD FOR EXPLORING
EMBEDDED UNDERSTANDINGS
Introduction…………………………………………………………………………71
Why Narrative? .........................................................................................................72
The In–Depth Interview………………………………….…………………………77
Participant Recruitment……………………………………….……………80
Mother Recruitment…………………………………...……………82
Health Care Provider Recruitment…………………….…………...83
Ethical Considerations of Recruitment and Participation ………………….83
The Interviews……………………………………………………………………...85
Transcription………………………………………………………………………..87
Narrative Interpretation……………………………………………………………..89
The Listening Guide………………………………………………………..92
Step 1: Listening for ‘Plot’…………………………………………93
Step 2: ‘I’ Poems……………………………………………………95
Step 3: Listening for Contrapuntal Voices ………………………..103
Contrapuntal Voices – A Window on Individual Moral
Frameworks?...................................................................................108
Step 4: Summary…………………………………………….…….109
Limitations and Challenges………………………………………………….…....111
Chapter Summary…………………………………………………………………112
CHAPTER 4 – PRENATAL SCREENING – THE TECHNICAL LENS
Introduction………………………………………………………………………..114
Blood Tests–Maternal Serum Screening………………………..………………...114
Ultrasound…………………………………………………………………………115
Soft Markers……………………………………………………………………….118
Nuchal Translucency……………………………………………………………...121
Amniocentesis…………………………………………………………………..…124
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SECTION B
VOICES IN CONTEXT
ILLUMINATING PRACTICE - IDENTIFYING CONSTRAINTS
Section Introduction……………………………………………………………….127
CHAPTER 5 – VOICES IN CONTEXT: PHILOSOPHICAL CONSTRAINTS
Introduction………………………………………………………………..………134
The Autonomous Self …………………………………………………….………135
Autonomous Voices…………………………………………………….…140
Informed Consent and Choice…………………………………………………….143
Presumed Consent…………..……………………………………………………..152
Chapter Summary ……………………….………………………………….…….153
CHAPTER 6 - VOICES IN CONTEXT: INSTITUTIONAL CONSTRAINTS
Introduction…………………………………………………………………….….155
Routine Testing and the Normative Pathway………………………………….….155
Institutional Barriers to Education: Blurred Accountability for ‘Informing’….….164
Communication – Commitments and Barriers……………………………………167
Overt and Covert Counselling…………………………………………………….171
Legal Frameworks: Practice and Policy Consequences…………………………..175
Chapter Summary …………………………………………………………….…..180
CHAPTER 7 – VOICES IN CONTEXT: SOCIAL CONSTRAINTS
Introduction……………………………………………………………………….182
The Social Construction of Choice……………………………………………….182
Trust in the Medical System, Science and Technology ………………………….188
Responsibility and Culpability……………………………………………………194
Poor Understanding of Disability…………………………………………………198
The ‘Preventable’ Cost of Disability: Cost/Benefit Analysis……………………..206
Chapter Summary ………………………………………………………………...211
12
CHAPTER 8 – VOICES IN CONTEXT: PERSONAL CONSTRAINTS
Introduction…………………………………………………………………….….213
Reassurance and the ‘Desire to Know’………………………………………..…..213
Risk in the Context of Antenatal Care…………………………………………….222
Probability and Risk Perception ………………………………..…………226
Anxiety and the Psychological Impact of Risk……………………………234
Chapter Summary……………………………………………………………...….239
SECTION C
TRANSFORMING PRACTICE: FACILITATING WOMEN’S
ETHICAL CHOICES
CHAPTER 9 – PATIENT EDUCATION IN CLINCAL CARE
Introduction…………………………………………………………………...…..242
From Information to Understanding: the Bridge of Learning………………....….243
Exploring Adult Learning ………………………………………………..…...…..247
Characteristics of Adult Learning………………………………………….……..251
Conditions of Adult Learning in the Clinical Context……………………..……..255
The ‘Need’ to Know……………………………………………….……..255
Integrating Existing Experience …………………………………….……259
The Importance of Prior Learning in Constructing New Knowledge….…261
The Physical Environment and Patient Practitioner Relationships ……..264
Mutually Defined Learning Goals and their Role
in Fostering Active Responsibility and Commitment………………..…..270
Defining Progress and Success………………………………….……..…272
The Shared Ethical Orientation of ‘Patient-Centred Medicine’
and Adult Learning…………………..……………………………….….273
Transforming Patient Learning in Clinical Care……………………………..….274
Chapter Summary……………………………………………………………..…276
CHAPTER 10 – TRANSFORMING PRACTICE
Introduction……………………………………………………………..………..279
Transforming Institutions………………………………………….….…………281
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Transforming Institutional Approaches to Ethics………………….…….282
Transforming Practitioner Education……………….……..….….285
The Ethical Role of Patient Educator…………………………………….288
Open Moral Spaces in Institutional Care……………………….….….….291
Transforming Policy…………………………………………….……......294
Injecting Consistency into Data Collection and Analysis……..…298
Transforming Faith in Technology: Challenging
the Sacred Narratives of Science………….…………………………..….303
Transforming Individuals……………………………………………………..….305
Enhancing Patient Participation: Supporting Shared Decision
Making Within a Framework of Patient-Centred Care…………………...306
Enhancing Patient/Provider Communication ………………………..…...310
Communicating What? Promoting Accurate
And Balanced Information…………………………………….….312
Supporting Patient Learning in the Clinical Environment……………..…316
Chapter Summary………………………………………………………………....321
CHAPTER 11 – CONCLUSIONS
Purpose of the thesis……………………………………………………………....323
Contributions of this research……………………………………………………..324
Directions for future research……………………………………………………..329
Summary ……………………...…………………………………………………..331
REFERENCES………………………………………………………..…………..333
APPENDICES
Appendix I - Topic List……………………………………………………….…...356
Appendix II A- Participant Information Pack – Mothers…………………………357
Appendix II B- Participant Information Pack – Practitioners……………..………361
Appendix III - Ethics Approval UHREC 3911H………………………………….363
Appendix IV - Topic List Key …………………………………………..………..364
14
Prelude
This project initially began as an honours thesis in response to my perception, as a
perturbed scientist, that in our haste to pursue the technological imperative in
medicine, our capacity to form a considered moral response to the potentially
contentious ethical consequences was galloping increasingly beyond our grasp. The
most immediate and glaring place in which I saw this largely unquestioning
commitment to the value of medical science and technology as indisputably “choice
enhancing” was in the routine recruitment of women (many of whom were friends,
family and colleagues), into prenatal testing regimes. On accepting an offer to be
tested (or perhaps more accurately – not objecting to the expectation that they would
embrace testing) these women, my friends and colleagues, were being invited to
consider the quality of their yet unborn children, as Rayna Rapp (2000, p.3)
describes it ‘to make concrete and embodied decisions about the standards of entry
into the human community’.
Within my immediate circle I noted both unquestioning, passive compliance with,
and active pursuit of prenatal screening technologies. Both positions were
apparently accompanied by a lack of clear understanding about the potential
outcomes of screening at the outset, resulting in a range of reactions from mild
bewilderment to deep emotional anguish when it later became obvious that these
tests by no means provided the clear reassurance expected. Often, women’s
compliance flowed from the reassuringly routine way such tests were incorporated
into established and seemingly mundane routine antenatal care, while the distress
emerged from the previously unconsidered realisation that, rather than providing the
much hoped for comfort, the test ‘data’ frequently yielded ambiguous and
inconclusive results that created confusion, uncertainty and for some, deep
psychological distress. Such results often generated more questions than they
answered, leaving women to ponder uncertain and previously unimagined futures,
not only for their prospective children, but also for themselves as parents.
For some when a problem was picked up, they felt their choices had been enhanced,
and the option to terminate the pregnancy of a child with a disability was a
15
welcomed one. However, others noted that when a problem was suspected, rather
than automatically enhancing choice as presumed, many felt powerlessly funnelled
towards what felt like the ‘choice-less choice’ of further testing, where often, the
ultimate practical ‘cure’ on offer was that of termination of any effected child.
Grappling with the newly dawning realisation that when the expected reassurance
was not forthcoming, and that screening was in effect ‘screening out’, many felt
deeply confronted and affronted by the apparently widely held presumption that they
would reject their child. Some expressed grave concern about the unspoken eugenic
undertones that accompanied this routine practice and were troubled by what felt
like their complicity and collusion in it. At the heart of their unease lay the most
fundamental ethical question, as Rapp (2002, p.3) so eloquently expressed before,
the question of what conditions of entry we impose on those we permit to join our
human community. Thus, the critical questions raised by prenatal screening
technologies such as, who is allowed to be born, under what circumstances and
conforming to which pre-conditions of entry to the human race are inherently ethical
in nature, because they reveal fundamental understandings and prejudgements about
the nature of human ‘being’.
In reflecting on these observations, I began to wonder why the ethical dimensions of
this practice were not more explicitly acknowledged, to question what our current
ethical protocols in clinical care were, and to seek out where and how our current
protocols seemed to be failing women (and health practitioners), the way so many of
my friends and colleagues had expressed feeling let down. I soon realised that the
practical ‘doing’ of ethics demanded more than simply asking pertinent
philosophical questions or exposing unethical practice. Authentically ‘doing’ ethics
demanded a commitment to exposing, contesting and transforming the unethical, by
pursuing achievable means to reform and humanise practice, in support of women’s
ethical decision making. Only in an ethically sensitised and responsive environment
could women genuinely have the freedom and support to honour their own moral
values in the face of these ubiquitous technologies.
However, medical practice does not occur in a social vacuum, and any potential
transformative response would need to be sensitive to the deeply layered personal,
16
social, historical, institutional, political and cultural lenses through which this
practice had evolved and continues to be interpreted by various stakeholders in it.
Gaining an understanding of these complex underlying and multilayered factors
would therefore be vital in formulating a feasible transformation. Collectively, these
ponderings began to form the basis for the research questions posed in this thesis
entitled ‘Enhancing ethical practice in prenatal screening: Facilitating women’s
ethical choices’.
It became obvious early in the research that, institutionally, the most commonly
accepted means of illustrating1F
2 an ethical sensitivity into prenatal clinical care
regimes was through eliciting women’s ‘consent’ to be screened. Informed consent
is frequently presented as a strong indicator of ethical probity because of the
inherent respect for individual patient autonomy it presumably encapsulates.
However, my preliminary research also starkly revealed that while up to 90% of
women in developed countries receive some form of prenatal screening2F
3, many
could not articulate the purpose or implications of the procedures ‘consented’ to3F
4,
although they had intentionally participated in such testing. Thus, the expectation
that consent to be tested automatically equated to an appropriate level of knowledge
and understanding inherent within the ethical standard of ‘informed consent’
seemed ill founded. Unchecked ‘consent’, or mere compliance, was arguably an
inadequate measure of ethical probity.
In speaking with my friends and colleagues it appeared that one major source of
their distress flowed from an initial lack of understanding of the finer points of the
interventions they had agreed (or acquiesced) to. This realisation raised questions
about the often tacit link between patient education and ethical probity in clinical
care, highlighting the ethical imperative to adequately educate women prior to
testing. As the process of becoming ‘informed’ to consent is essentially educational,
the importance of learning in the clinical context is critical. However, there
appeared to be limited awareness at either a practical or theoretical level that
2 I say ‘illustrating’ because my sense is that the commitment that ethics must be ‘seen to be done’, often expediently trumps the commitment to reflecting on genuine ethical needs or requirements. 3 See Spencer, Spencer, Power, Dawson, & Nicolaides, 2003 4 See Lippman, 1992; Markens, Browner, & Press, 1999; Press & Browner, 1995, 1997; Santhalahti, Hemminki, Latikka, & Ryynanen, 1998; Stapleton, Kirkham, & Thomas, 2002
17
education, on which reflective understanding is built, is a fundamental pre-requisite
to ethically robust intervention. While the commonly pursued ethical agenda held
‘informed’ consent to be the benchmark of ethicality, the significance of learning for
understanding in preserving moral integrity seemed to be given insufficient weight
by current protocols and the critical link between sound educational opportunities
and ethical probity was under explored and under acknowledged.
Responding to the conflicting observations above, this research project offers an
applied ethics framework to illuminate and give critical insight into the complex
situational considerations that shape and constrain ethical practice. Critically, it
highlights the ethically essential difference between possessing information and
possessing understanding. While this point may signal an educative difference, it
represents a critical distinction ethically as the strong reliance on ‘information
disclosure’ as a legal obligation in care sets out very different expectations than the
‘information understanding’ requirement implicit in the ethical interpretation of
informed consent. The former might be seen as a necessary event, while the latter
emerges from an ongoing relational process.
Finally, mirroring my own learning pathway, this research is intentionally
multidisciplinary in its gaze, drawing on a range of complementary and interrelated
insights flowing from the humanities, education and science. As we are first and
foremost embedded in the human condition, it is the insights and understandings
offered through the humanities that form the basis of understanding the impact of
technology in, and on, our lives. It is from the coherent base of the humanities that
we may make sense of the individual and collective meaning of science and
technology in our lives, to critically analyse and evaluate our apparent willingness to
embrace the technological imperative, and guide our capacity to pursue the humane
use of these burgeoning technologies into the future. Therefore, this research is
anchored in an ‘applied’ view of ethics, as a coherent philosophical framework from
which to identify, evaluate and forge practical strategies of social, cultural,
educational and institutional reform where required. Indeed, the integrated response
required may only be achieved by intentionally adopting an inclusive and co-
ordinated multidisciplinary standpoint.
18
Overview of the Thesis
The thesis is broadly divided into three sections. Section A, ‘Laying the
Foundations’, consists of Chapters One to Four, in which the scope of the research,
the foundational philosophical orientation, an explanation of why a narrative
methodology was adopted, and a brief description of prenatal screening tests are
outlined.
Chapter One provides a broad overview of the multifaceted and interwoven
considerations that form the social, personal, institutional and philosophical
background from which the questions raised in this work emerge.
Chapter Two gives an account of the ethical orientation underlying the thesis,
prefiguring the interpretive framework that shapes the research. It explores the
dominant rational and analytical philosophical approaches to ethics as practiced and
entrenched within the medical model of care and proposes that these are lacking
when it comes to building understandings of the deeply embedded and relational
nature of moral decision making. An alternative ethical orientation is found in the
phenomenological philosophical account of the human condition. This account
which acknowledges the embodied human condition as one significantly interpreted
through multiple layers of social embeddedness provides a richer and more resonant
ontological foundation from which to explore and transform the ethically
problematic aspects of prenatal screening. This alternative way of approaching
ethics as a way of understanding human ‘being’ and ‘becoming’ rather than focusing
on the dominant epistemologically centred ethics of ‘thinking’ and ‘knowing’ is
outlined.
Chapter Three addresses questions of methodology and provides an account of why
a dialogical, narrative framework of inquiry and analysis is seen as best suited to the
research questions posed. Flowing naturally from the ontological understandings of
human beings as essentially dialogically and relationally constructed, a narrative
methodology comfortably complements the phenomenological view of the human
self as embedded, embodied and relational. This chapter also explores the rationale
19
underpinning the adoption of semi-structured, in-depth interviews with the seven
mothers and eleven practitioners of this cohort. It describes the recruitment of
participants and the interview and analysis processes adopted. As a method of
narrative analysis that accommodates the plurivocal and multifaceted nature of
narratively structured lives, the Listening Guide (Gilligan et al 2003) was adopted as
a suitable means of analysis. The practicalities and problems of use of the Listening
Guide will also be considered.
Chapter Four provides a brief description and discussion of the prenatal screening
tests commonly encountered by the participants. It gives a short background of the
development of these tests, and considers the potential strengths and weaknesses of
each.
Section B, “Voices in Context”, explores the situated accounts and experiences of
this cohort of participants. Having garnered individual accounts from the nineteen
participants, and considered the emerging themes, plots and contrapuntal voices
through analysis using the Listening Guide, Chapters Five through to Eight situate
these participant voices within the broader context of existing conversations and
understandings, and weave participants’ stories through the ongoing and evolving
conversations between other mothers, practitioners, scholars and researchers
working in this field. Through this process, consideration is given as to where local
experiences fit within the broader context of the globally burgeoning practice of
prenatal screening. This section is structured into four chapters which consecutively
explore the ethical, institutional, personal and social constraints that act to shape
ethical decision making in prenatal screening. In terms of the applied ethics
framework adopted, these four chapters address the hermeneutical and appreciative
dimensions of practice, considering individual choices and behaviours within the
multilayered and interdependent contexts of the personal, social, institutional and
ethical constraints experienced and articulated.
Finally, Section C, ‘Transforming practice: Facilitating women’s ethical choices’
which consists of Chapters Nine to Eleven, highlights the crucial ethical link
between embracing sound educational understandings and strategies in patient
20
education and the development of the reflective understanding demanded of
ethically adequate informed consent protocols. The necessary transformation of
clinical practice on individual and institutional levels needed to facilitate, support
and enhance women’s ethical choices when confronted with the offer to screen their
unborn children are considered.
Chapter Nine, ‘Patient Education in Clinical Care’, explores the common
foundational ontological stance underpinning both the phenomenological account of
human being and that implicit within educational philosophy. The chapter explores
how learning theory may be applied to educational processes in clinical care in a
way that accommodates the numerous ethical, institutional, social and personal
constraints identified in the previous chapters. Participants’ educational experiences,
whether as teacher, learner or both are incorporated to illuminate where potential
transformative responses to the ethical challenges identified may be strengthened.
The critical differentiation between the minimal legally adequate information
disclosure and morally adequate reflective understanding will also be considered in
light of their critical ethical importance in achieving ‘informed’ consent in practice.
Chapter Ten, ‘Transforming Practice’, addresses the responsive transformative call
of the ethical in two parts; transforming individuals and transforming institutions.
Individual transformation through adopting a patient-centred model of care to
promote the realisation of genuinely shared decision making between patient and
practitioner is discussed, alongside the need to promote communication
competencies, and develop clear, accurate and balanced literature. Several areas of
potential institutional ethical transformation are also discussed, including the re-
humanising and re-contextualising of ethics within appropriate and accessible
institutional infrastructures that promote open and inclusive moral spaces. The need
to develop evidence based culture of practice through pursuing more comprehensive
data collection and analysis in Queensland and the need to undertake law reform to
enable a transparent evidence based culture to flourish in the local context are also
discussed.
21
Chapter Eleven concludes with a review of the contributions and recommendations
flowing from this research, summarises the outcomes and proposes some directions
for future research in this area.
22
SECTION A
LAYING THE FOUNDATIONS
23
CHAPTER ONE
INTRODUCTION
Situating Prenatal Screening – Exploring Contexts
‘Women are situated on the research frontier of the expanding capacity for
prenatal genetic diagnosis, forced to judge the quality of their own foetuses,
making concrete and embodied decisions about the standards of entry into
the human community’ (Rapp, 2000, p.3).
The development of prenatal screening technologies4F
5 has been described as
‘simultaneously liberating and eugenic’ (Rapp, 2000, p.2). They are liberating in
that they can provide a means by which some parents may conceive or give birth to
the healthy child they desire, but also eugenic as, in the absence of the ability to
‘cure’ or treat certain physical or genetic conditions that may be diagnosed, they
predominantly achieve this end through the selective termination of those foetuses
judged to be physically or genetically undesirable. While both vantage points
equally claim theirs as the most socially and ethically responsible course of action,
either by preventing pain and suffering to, or unconditionally accepting, a child with
a disability, it is immediately clear that the burgeoning practice of prenatal screening
uncomfortably straddles a gaping ethical divide.
The presumption that the technologically mediated goal of preventing disability is
‘desirable and defensible’, and a worthy pursuit that in no way passes judgement on
existing people with disabilities is widely disseminated and claimed to be generally
shared in society (Parker, Forbes, & Findlay, 2002, p.10; Savulescu, 2001).
However, the means by which such prevention is achieved, the entrenched social
prejudice it is claimed to instil, and the potentially eugenic stance within are strongly
contested by many commentators writing from a disability rights perspective
(Bridle, 2004; Hubbard, 1988; Kenen, 1999; Newell, 2003, 2007; Parens & Asch,
5 A description of the most common prenatal screening technologies encountered by pregnant women in this study is given in Chapter Four.
24
2000; Shakespeare, 1998, 1999, 2001). James Lindemann-Nelson (2003, p.3) further
cautions,
‘According people the respect they are due is a matter of general
importance, and we ought be especially scrupulous when people who have
endured a history of negligence and abuse claim that they are yet again
being demeaned’.
When the nature of the much hoped for ‘prevention’ comes in the form of
terminating an existing foetus or embryo, ‘prevention’ takes on a radically different
and increasingly controversial meaning; clearly a more extreme form than a measles
inoculation for example.
Thus, in being invited to embrace the technological intervention of prenatal
screening, women are placed in, what is for many, the uncomfortable and unenviable
position of taking responsibility for making ‘concrete and embodied decisions about
standards of entry in the human community’ as Rapp (2003, p.3) noted earlier.
Markens, Browner and Press (1999, p.367) similarly describe this choice as
‘engag(ing) in risk assessment which can determine the life and birth of future
generations’. Thus, the factors that shape this ethical divide between the culturally
endorsed views of technology as irrefutably choice enhancing and good, and the
moral unease of prejudicial, discriminatory and stigmatising practices directed
against people with disabilities, expose complex ethical questions that challenge our
most fundamental understanding of what it means to be a human being. These are
fundamentally ethical questions and they form the social and cultural backdrop of
this thesis.
Generally across all forms of medical intervention, the widely accepted and
favoured safeguard against possible ethical impropriety, or in the case of prenatal
screening accusations of coercion and eugenic intent, has been to focus on
obtaining a patient’s informed consent prior to any proposed intervention (Marteau
& Dormandy, 2001). A prior consideration to our reliance on informed consent as a
legal and ethical safeguard is that the intervention in question is not contrary to the
25
accepted public order or shared sense of moral good. Only when an action does not
breach the law, or breach codes of moral action in a society can a person be
considered at liberty to give their voluntary consent. While prenatal screening is
widely practiced and accepted in our society, and provided by public health
institutions which convey societal endorsement of this practice, some disagreement
arguably lingers as to the inherent ethical acceptability of selective termination
(Asch & Wasserman, 2005; Caplan, 1999; Clapton, 2003; Hubbard, 2001; Lippman,
1991; Wertz, 1998; Wertz & Fletcher, 1998). The prefiguring tension surrounding
the ethical acceptability of prenatal screening is acknowledged throughout this work;
however, this work does not seek a definitive answer to these divisions. Rather it
explores the ethical tensions inherent within current practices and seeks to illuminate
practical responses which may support all women to act within their own moral
frameworks when confronted with the moral choices inherent within the offer to
undergo prenatal screening.
When a proposed intervention is legal, conform to public policy and community
standards of ethical behaviour, the conditions of informed consent prior to any
medical intervention articulated in the medical ethics literature generally embrace
the following five 5F
6 criteria;
• that a patient must be competent to decide,
• that all material information about the proposed intervention must be
disclosed,
• that participation in proposed intervention is optional and voluntary,
• that the patient fully understands the nature and potential benefits and risks
of the proposed intervention,
• that consent is active, and given freely without coercion
(Beauchamp & Childress, 2001; Jonsen, 1998; Manson & O'Neill, 2007; Mitchell,
Kerridge, & Lovat, 1996).
6 In law, three pillars are generally cited being competence, information and voluntariness, however, the ethics literature commonly cites the five listed above.
26
Hence a patient giving their informed consent, granted freely from a position of
knowledge and understanding to undergo a particular ‘treatment’, has come to
represent that any proposed intervention is ethically robust as the above mentioned
conditions of competence, voluntariness and understanding are presumed to be
implicit within its application. Seeking informed consent is further regarded as
proof that patient autonomy has been respected, while the realisation of informed
consent in practice is presumed to support individuals in their capacity to
intentionally make important decisions and pursue their own individual goals in a
way that is consistent with personal moral frameworks, free from control or
manipulation.
The pre-conditions of voluntary and knowledgeable participation are believed to be
inherent within prenatal screening protocols. However, research from around the
globe into the motivations and understandings of women engaging in prenatal
screening suggests that although many women do indeed participate or consent to
screening, a significant number cannot articulate the purpose or potential outcomes
of testing. This well established research into the motivations and experiences of
women participating in prenatal screening programmes commonly reveals a lack of
reflective understanding, passive compliance with a routine normative pathway and
an apparent inability to articulate the purpose, justifications or potential problems of
the testing they have participated in (Bernhardt et al., 1998; Harris, Connor, Bisits,
& Higginbotham, 2004; Kohut, 2002; Markens, Browner, & Press, 1999; Press &
Browner, 1997; Santhalahti, 1999; Santhalahti, Hemminki, Latikka, & Ryynanen,
1998; Stapleton, Kirkham, & Thomas, 2002; Williams, Alderson, & Farsides,
2002c). The tacit expectation of participation that routine screening conveys further
obscures the optional nature of screening while the poor knowledge levels reported
significantly challenges any comfortable presumption of ‘informed’ engagement.
The belief that participation may be equated to ethical integrity as claimed by some
commentators (Cuckle, 1995; Whynes, 2002) thus seems ill founded.
As informed consent protocols have gained precedence primarily through the courts,
a further barrier to fulfilling the ethical intentions of informed consent in an
institutional setting is the strong defensive legal bias which influences how such
27
protocols are actualised within organisational structures. As flagged previously, the
ethical standard of understood consent cannot be presumed to be inherent within the
minimal legal criteria for informed consent in the area of prenatal screening. The
legal bias which permeates practice often engulfs the more subtle moral or ethical
negotiations required from the patient – physician exchange (Manson, 2007; Wear,
1998). Indeed some commentators openly describe existing informed consent
protocols as merely empty bureaucratic rituals (ibid), the main purpose of which is
to provide a defensive legal document or form of insurance against malpractice
suits, while paying superficial concern to the moral dimensions of care (Gillott
2001; Kenen, 1999; Press & Browner, 1995). When the motivation to procure
consent is primarily driven by the legal goal of averting litigation, rather than
proactively equipping the patient with the necessary understandings to make
decisions that are medically and morally coherent for that individual, the clash of
motivation between those seeking consent and those giving it potentially creates a
conflict of interest that may further widen the existing ethical divide.
Some very real particular and practical problems flow in trying to actualise informed
consent in the clinical context of antenatal care. Entrenched institutional pathways
such as the routine nature of screening may obscure voluntariness; overt and covert
counselling may be subtly coercive while the predefining of certain outcomes as
unacceptable may limit possibilities and narrow the boundaries of tolerance.
Additionally the lack of genuine access to alternative pathways delimits which
choices are permissible; limited time for consultations often prevents the formation
of effective communication partnerships and poor access to adequate education and
knowledge building converge to create a situation in which women’s individual
agency may be practically and profoundly constrained.
Within the wider context of health care, low levels of informed consent are
commonly observed across many fields of medical intervention and compelling
evidence of failure to achieve ‘informed consent’ persists across an extensive variety
of medical interventions and disciplines. Disturbingly low figures in meeting the
ethical requirements of informed consent have been reported at 0.5 % success for
‘complex’ decisions, defined as having extensive effect on the patient with uncertain
28
and multiple outcomes, and reaching a mere 26% success for simple decisions
where the effect is minimal and the outcomes are clear and singular (Braddock,
Edwards, Hasenberg, Laidley, & Levinson, 1999, p.p.2315-7). Using Braddock et
al’s (ibid) descriptors, the decision to undergo prenatal screening may be regarded as
complex, as the potential outcomes are numerous and uncertain, and the
consequences may indeed be personally devastating for some. Such poor success in
achieving informed consent within medical care generally and within prenatal
screening protocols in particular expose the failure of current approaches. Although
the accepted protocols may meet the minimum legal or administrative requirements,
evidence suggests that they commonly struggle to fulfil their ethical purpose of
preserving patient autonomy and empowering the patient with the right to
intentionally embrace or reject the intervention on offer (Bottrell, Alpert, Fischbach,
& Emanuel, 2000; Braddock, 2002; Braddock et al., 1999; Wear, 1998). The
potential consequences of ill informed compliance in the realm of prenatal screening
for women are identified as short and long term anxiety or depression; alienation
and feelings of coercion (Goel, Glazier, Summers, & Holzapfel, 1998; Kowalcek et
al., 2002; Watson et al., 2003). The failure to implement robust informed consent
protocols that genuinely uphold and promote individual capacity for morally
coherent decision making therefore has real potential to harm.
These observations invite further consideration of the underlying presumptions,
conventions and ethical intentions inherent within ‘informed consent’. Critically,
they also raise questions about the role that ‘informed consent’ may play in
preserving individual autonomy via the right to decide about treatment options, of
protecting individuals from coercion and manipulation. The historical roots of
requiring a patient to give ‘informed consent’ to participate in medical research
were first outlined with respect to medical research in the Nuremberg Code
(Beauchamp & Childress, 2001, p.77; Manson & O'Neill, 2007), and later in the
Declaration of Helsinki 6F
7. These codes significantly position informed consent as a
process of ensuring patient autonomy and freedom ‘from’ control, rather than their
freedom ‘to’ pursue independent and intentional goals. It is the protective ‘freedom
7 See World Medical Association. Ethics Unit Declaration of Helsinki. 2007. www.wma.net./e/ethicsunit/helsinki.htm. Retrieved 20-12-07. See also Goodyear, Krleza-Jeric, & Lemmens (2007) for comment on the most recent changes to the Declaration.
29
from’ stance that appreciably defines respect for autonomy in the medical ethics
literature, although as outlined above, this appears not to be commonly achieved in
clinical practice either generally or with respect to prenatal screening protocols.
However, some more mainstream philosophers (Dworkin, 1988, 2003; Taylor,
1989), and several feminist scholars (Dodds, 2000; Donchin, 2001; Friedman, 1997;
Sherwin, 1998) further suggest that the typical conception of autonomy, as it is
generally represented, holds overly individualistic, atomistic and detached views of
the human self. These philosophers assert that dominant accounts of autonomy
promote rational self interest and distancing, elevate reason over emotion, and
encourage an adversarial stance towards decision making, all on the (false)
presumption that individuals are unencumbered and unimpeded in ‘choosing’ their
preferred pathway. This dominant account they maintain ignores the deeply
relational, socially embedded and constrained nature of human being (Friedman,
1997). As human experience is principally defined by social connectedness and
relationships, and the inevitable power dynamics therein, each ‘autonomous’ act
clearly has repercussions beyond the immediate decision maker. In elevating
independence from others as the key defining feature of autonomy, the dominant
account lacks ontological coherency and thus silences discussion of the multifaceted
nature of autonomy. Nedelsky (1989, cited by Friedman, 1997, p.45) proposes that
social relationships, contexts and practices are not separate from autonomy or
individuality, rather social context and interdependence are necessary to foster our
capacity for self governance. As all autonomously considered decisions are
significantly prefigured by socially distilled factors external to the individual person
deciding, a view of autonomy that embraces the multiple particular, contextual and
interdependent features of decision making is more appropriate to supporting the
ethical aims of autonomy and informed consent. Autonomy and relationality
therefore need not be positioned as mutually exclusive concepts, but rather as
mutually informing and reinforcing aspects of the human condition.
Despite the mounting evidence that ‘informed consent’ protocols in their current
form have enjoyed limited practical success to date (Manson & O'Neill, 2007; Wear,
1998), or that broader philosophical concerns exist about the defining features of
30
autonomy or the merit of elevating individual agency and personal choice as the
privileged means of shaping our collective moral direction, the ethical ideals of
informed consent and autonomy hold considerable merit within broader Western
social frameworks. Thus ways to promote their actualisation, by seeking fuller
understandings of the numerous and complex overlapping and interwoven
constraints embedded within the broader social, institutional and personal domains
that have stifled their realisation in practice need to be identified and incorporated
into a more functional and responsive framework. The problems observed in
actualising informed consent may lie not with the conceptual intentions per se, but
perhaps with the thin, reductionist, often cursory and inadequate support and
organisational infrastructure directed at genuinely achieving them in clinical care.
The ethically adequate and socially inclusive ‘process’ of negotiating informed
consent, as opposed to the minimal legally adequate administrative ‘event’ of
obtaining consent, has the potential to equip patients with the necessary
understanding to make ethical decisions in accordance with their own moral
frameworks. Thus informed consent and respect for autonomy remain desirable and
necessary prerequisites to ethically robust medical intervention. The critical question
remains how we may support their actualisation in practice.
A major barrier to informed consent is promoting the desired level of patient
understanding. When sound understanding is achieved within a strong therapeutic
partnership, and the ethical standard of informed consent is achieved, research
shows positive outcomes for patients and practitioners including active acceptance
of outcomes (positive and negative), increased satisfaction and more stable
decisions, higher compliance7F
8 with treatment, lower instances of litigation and fewer
ongoing referrals (Bekker, Hewison, & Thornton, 2003; Levinson, Roter, Mullooly,
& Frankel, 1997; Stewart, 1995; Stewart et al., 2000). Thus achieving informed
consent may provide a valuable and appropriate means for ethically supporting
women and their practitioners in navigating the potentially controversial ethical
terrain of prenatal screening. Charles Taylor (1989) argues that if we value
8 Although Goodwin-Johansson (1988) and Raffle (2001) caution against structuring patient education in overly optimistic terms as a means of ensuring ‘compliance’ as this potentially undermines patient autonomy. Irrespective of whether a patient ultimately ‘complies’ with the preferred medical recommendation, the ethical intentions of informed consent is to promote engaged decision making, not to ensure compliance.
31
something as a significant ‘good’, we are morally obliged to create the conditions
that support its actualisation. Hence if achieving informed consent is held to be a
communally valued ‘good’ through which ethical care is promoted, if the benefits
outlined above that flow from facilitating informed consent are genuinely ‘goods’
we affirm, we are called upon to carefully examine the sources of the current
failures, to guide the positive transformation of practice to support these ethical
goals.
Within a framework of relationally aware, socially contextualised and inclusive
notions of autonomy and informed consent, practical problems concerning how to
inform (in addition to ‘what’ to inform) arise. Focussing initially on questions of
‘how’, we must first acknowledge that the process of becoming informed prior to
consenting is essentially an educational one. Thus the importance of incorporating
successful teaching, learning and communication strategies into strengthening
informed consent procedures seems a practical route to explore. Until now however,
the complexity of the cognitive processes involved in acquiring a reflective
understanding have been grossly under acknowledged in the ‘informing’ part of
bioethical practice. While the legal obligation of informed consent rests essentially
upon a minimal standard of information disclosure (Manson & O’Neil, 2007), the
fuller ethical obligation hinges upon a person having a contextually appropriate
understanding of the critical implications to them, of any testing entered into. As it
is this fuller account of reflective understanding that better fulfils the ethical
demands of ‘informed consent’, patient learning must be considered a critical
dimension to ethically robust intervention.
To date, there appears to be a limited awareness at either the practical or theoretical
levels of education being a fundamental pre-requisite to ethically robust care or of
the strong interdependence between ethically secure intervention and sound
educational practices. Thus the incorporation of appropriate educational
frameworks, of understanding the underlying nature of teaching and learning in
clinical care needs to be acknowledged as an essential rather than complementary or
optional feature of the ethical care. Understanding and promoting patient education
32
in the clinic may therefore play a significant role in laying strong foundations for
facilitating ethical decision making for women.
Flowing from the observations above, the questions posed in this thesis are founded
on the combined observations that:
• Prenatal screening, with its invitation to judge which characteristics
are desirable in our future children, raises deeply complex and
sensitive ethical issues which strike at the heart of individual and
collective understandings of human being and becoming. Robust
ethical standards must therefore be applied to this increasingly
routine, but potentially ethically contentious, pregnancy intervention.
• While respecting patient autonomy through eliciting informed
consent is valuable in preserving individual capacity and diminishing
coercion or manipulation, current protocols as described in the
published literature appear to have significantly failed to support
patients in achieving a voluntary, understood and active participation
in medical interventions both generally, and in the specific case of
prenatal screening. The lack of informed consent does not
automatically suggest that the patients’ wishes have been violated
(Schneider, 1996); rather, it flags that the presumed ethical safeguard,
in its current actualisation, may be less effective than believed.
• Developing robust informed consent protocols to support the
humane, ethically inclusive and transparent use of prenatal screening
technology may require us to rethink the current individualistic,
legalistic and ethically reductionist approaches to consent. This will
require a reorientation of collective understandings of autonomy as
unencumbered individual choice, towards acknowledging autonomy
as deeply relationally embedded and constrained, socially
contextualised and subjectively interpreted. It also requires explicit
recognition of the multiple underlying social, personal, institutional
and philosophical constraints that impinge upon the practical
realisation of autonomy, consent and choice. If these obstacles are to
33
be meaningfully addressed and minimised, they must first be openly
articulated.
• If informed consent is based upon patient understanding, any
commitment to strengthen informed consent protocols demands that
we address the question of ‘how’ to effectively inform. Furthermore,
we must remain cognisant that ‘what’ information becomes worthy of
informing is significantly pre-filtered through various cultural,
historical and institutional interpretive lenses. As becoming informed,
and gaining reflective understanding, is a process of learning, the
insights offered through educational philosophy and cognitive theory
may provide a suitable platform to strengthen informed consent. The
crucial ethical distinction between minimalist forms of information
disclosure and the fuller moral requirement of reflective
understanding of the personal implications of any proposed
intervention may then be supported within the organisational
infrastructures that women encounter during pregnancy.
• The ethical transformation of practice must be acknowledged as
occurring simultaneously at the individual and institutional levels, as
in reality they are interdependent, each partially defining,
constraining or supporting the other.
This thesis seeks to examine the deeply embedded social and ethical elements that
shape the burgeoning practice and unspoken presumptions that fuel our embrace of
prenatal testing. While the applications and inventions of this technology have been
described as a ‘new’ revolution, they are arguably influenced by some very old,
historically significant and deeply entrenched prejudices and practices. As collective
(mis) understandings of new technologies colonise our expectations of the controls
we can expect to impose on the human condition, the criteria of what is an
‘acceptable’ life, and ultimately the choices we make of what constitutes a suitable
body for our children to be born with permeate our judgements. Against a cultural
backdrop in which the value of individual choice is privileged, in which an unborn
34
child has no recognised legal status 8F
9 and in which consumer demands infiltrate
individual and collective expectations of clinical care, careful consideration of how
and why such tests are developed, offered and accepted demands further reflection.
With respect to this study, as women and their unborn children are the sole
recipients of these prenatal interventions, this research seeks to illuminate how the
ethical dimensions of existing prenatal screening practices and procedures are
received specifically by women within this local cohort. As women’s experiences
may be critically shaped by the presumptions, prejudices and attitudes of their health
practitioners, the motivations, experiences and beliefs of a cohort of health care
providers will also be canvassed. Exploration of the actual experiences of both
groups, mothers and practitioners, may collectively illuminate some of the many
social, cultural, historical and philosophical roots that inform practice today, and
provide a more inclusive and coherent picture from which meaningful and practical
transformation may be forged.
As the underlying tenets of ‘informed consent’, voluntary and understood
participation, are broadly accepted as representing a high standard of ethical care in
medical practice, genuinely facilitating informed decision making remains a critical
concern in the practice of ethics across all forms of medical care. The implications
of this research, while situated primarily in the context of prenatal screening may
therefore add practical insights across numerous sites of medical intervention.
Research Questions and Scope
Based on the concerns outlined above, this thesis seeks to address the practical
question of how we may enhance ethical practice in prenatal screening, support
women’s (embedded) autonomy and facilitate their ethical choices when faced with
the invitation to engage in this increasingly routinised technological intervention in
9 Under the Queensland Criminal Code a charge of manslaughter may be brought for an action that causes the death of a foetus that would otherwise have been born alive. However, the harm from a legal perspective is to the mother, not the foetus. See discussion in Chapter 9.
35
pregnancy. The structure of this research will build upon four key areas of
investigation.
The first area of research clarifies the nature and significance of the philosophical
concepts of respect for autonomy and ‘informed consent’ within biomedical
practice. Critical aspects of the rise of autonomy, the foundational presumptions of
selfhood and ontology inherent within the dominant understandings, and the
practical consequences of conflating autonomy with informed consent in medical
care will be considered.
The second area of investigation explores the emerging critical literature that
identifies problematic ethical issues inherent within current prenatal screening
practices that constrain, undermine and present barriers to women in exercising their
full moral agency in practice. Most of this research originating from the United
Kingdom, United States of America, Canada and Europe and flags numerous
personal, social and institutional constraints that impinge upon the authentic
achievement of ‘informed consent’ within existing protocols. This critical literature
exposes the evolution of a set of circumstances in which ‘routine’ screening
undermines voluntariness, in which poor understanding results from inadequate
explanation of procedures and illusionary notions of ‘choice’ are perpetuated in a
clinical setting where alternative choices are often not explicitly acknowledged or
offered (Bridle 2001; Jackson, 2000; Lippman, 1999a; Markens et al., 1999; Press &
Browner, 1997; Rapp, 2000; Santhalahti et al., 1998). While the five facets of
informed consent outlined previously9F
10 are assumed to be inherent within the
process of intervention, existing research reveals that although many women
conform to screening routines, their experiences suggest compliance rather than
active and understood informed consent. The reality of these routines may
potentially place women at an ethical disadvantage or risk of physical or
psychological harm.
These first two areas of research illuminate the broader social, cultural and historical
context within which the remainder of the research is based. Australia operates from
10 See p. 25.
36
a similar Western, liberal, biomedical model of care observed in other countries
discussed throughout the literature review, therefore, it is likely that similar
problems as described above are present in various practice settings in Queensland.
However, the policies that guide such practice locally show no cognisance of the
problems flagged elsewhere and limited research of this nature has been undertaken
locally.
The third area of research will explore whether the observations made in overseas
research are apparent locally within Queensland health systems, to the extent that
they are articulated by members of this cohort. The insights offered by this cohort
will reveal aspects of local practice not previously known. Locally, women and
health practitioners will be invited to engage in dialogue about their experiences of
prenatal screening. Their individual experiences will be compared to and contrasted
with accounts contained in existing published literature. Through inviting individual
narratives, the lived experiences of individual participants in screening regimes
(mothers and health care professionals) were considered with the following
questions in mind.
1. Are the indicators of informed consent, outlined previously, met in
practice?
o Can participants explain the purpose and outcome of any
testing undertaken?
o How do women and practitioners view the voluntariness of
their participation in screening regimes?
o How do women and practitioners regard general levels of
understanding of the practical and ethical contours of such
intervention?
2. What barriers and constraints are identified, individually and
institutionally, as impinging upon the capacity to exercise full
autonomy and promote informed consent in the clinical context?
37
3. If informed consent is critically linked to gaining appropriate levels
of reflective understanding, what educational opportunities are
accessible to promote this level of understanding in the antenatal
arena?
o Is the role of education being given adequate ethical
significance in antenatal care?
o What are the obstacles to educating or learning in this
context?
The fourth and final area of investigation will examine the potential contribution of
incorporating an educationally grounded response to the weaknesses observed based
on principles of educational philosophy and adult learning. Considerations of moral
choices made in the medical realm have been traditionally considered within
philosophical, social or medical frameworks. Some alternatives to these traditional
perspectives have been developed by feminist researchers for example, narrative
ethics (Tschudin, 2003), the expressive – collaborative model of ethical decision
making (Walker, 1998), or an ‘ethic of care’ (Gilligan, 1982). Currently there is
limited discussion in the published literature about what an educational paradigm
may offer in terms of strengthening the ethical dimensions of medical care. Hence,
this final piece of analysis offers a unique and key contribution to the wider
bioethics discussion. As informed consent forms the basis of ethical intervention
across all forms of medical research and clinical practice, the insights offered here
may contribute well beyond the narrow scope of the specific context of this research
and further contribute to the ongoing bioethical conversations regarding autonomy
and informed consent.
While existing research identifies many inherent limitations within existing
protocols, as yet few practical transformational frameworks to support informed
consent, based on understandings of relationally embedded autonomy have been
proposed. Accordingly, one outcome of this study will be to highlight the
importance of the educational to the ethical. A responsive educational framework
within a supportive organisational infrastructure that is sensitive to the particularities
38
and constraints of the clinical environment might provide a basis for repairing,
reforming and redressing some of the ethical gaps identified.
Chapter Summary
Based on an initial literature review, it is suggested that the current response of
incorporating legally driven, administratively framed and ethically reductionist
informed consent protocols into existing routines has failed to create an
environment in which the individual and communal ethical concerns about the
potentially socially divisive or eugenic outcomes of prenatal screening technologies
may be meaningfully considered. Numerous overseas studies have revealed that,
while up to 90% of women in developed nations are believed to undergo some form
of prenatal screening to assess the health if their unborn child, significant numbers
do not understand the purpose or potential outcomes of the testing received. The
presumption that participation alone equates to informed consent, which in turn
assures ethical probity, is therefore flawed as the espoused ethical standards required
within the biomedical definitions of ‘informed consent’ of voluntariness and
reflective understanding seem to be rarely achieved in practice.
When the ethical principle of autonomy, realised through the exercising of informed
consent, is applied in a clinical and bureaucratic context that is unresponsive to, or
perhaps unaware of, the personal, institutional and social constraints that exist, a
persons’ capacity to engage fully in the moral decision making process may become
eroded. Indeed, entrenched modes of treatment may leave little room to examine
why certain interventions have become favoured or recommended at the expense of
other options, such as the option not to screen, an alternative which may remain
undisclosed (Pilnick, 2004). Inadequate educational opportunities coupled with the
lack of appropriate organisational infrastructure to support the deeply related,
situationally dependent and embedded process of decision making may therefore
undermine individual capacity to give considered and informed consent.
Additionally procedurally entrenched discriminatory attitudes towards disability
may promote narrowly defined constructions of normalcy that ultimately undermine
a patient’s capacity for full moral engagement and active decision making in the
context of prenatal screening. The subsequent harms which potentially flow on to
39
women include avoidable anxiety, depression and possibly long term psychological
trauma (Goel, Glazier, Summers, & Holzapfel, 1998; Kowalcek, Muhlhoff,
Bachmann, & Gembruch, 2002; Watson, Hall, Langford, & Marteau, 2003). While
these factors have been alluded to in this introduction, a fuller exploration will be
undertaken in Section B of the thesis.
The objectives of this research are to explore the ethical dimensions of prenatal
screening interventions with a view to establishing whether the failures of informed
consent protocols to provide an ethical safeguard as observed overseas may be
present locally. A further aim is to unravel the multiple and complex interweaving
factors that underpin such failure and consider whether the insights offered through
established educational frameworks may offer an accessible way to strengthen
ethical protocols. Exploration of these issues from an intentionally multi-disciplinary
perspective with the goal of developing a broadly considered, coordinated and
inclusive transformational response is uncommon and largely absent from the
existing literature.
The predominant ethical considerations that emerge in the discussion of prenatal
screening often centre upon whether this technology is eugenic in its gaze (Asch &
Wasserman, 2005; Lippman, 2003; Parens & Asch, 2000), whether treatment offers
of termination are ethically contentious or whether this is yet another discriminatory
form of social gate keeping aimed at selecting what ‘type’ of people are worthy of
birth (Hubbard, 1988; Reinders, 2000; Shakespeare, 1998, 2001). These questions
certainly frame the broader context of why we as a society have pursued the
development of such technologies. We are increasingly challenged by the ethical
reality of balancing the indisputable goods that medical technology may offer
through the prevention of disease, with the very real potential harm that human life,
or potential human life, may be dehumanised, devalued and disrespected in the
process. As Kass (2003, p.3) notes ‘distinguishing well from bad thus intermixed is
often extremely difficult’. While embracing the ‘technological imperative’ may hold
great promise for the relief of pain and suffering, for improving quality of life, and
for enhancing choice and well being for many, the challenge remains of how to
promote the humane and ethical use of such technologies in ways that do not further
re-enforce discriminatory, stigmatizing or de-humanising practices. As the capacity
40
to prenatally diagnose continues to outstrip the capacity to cure, a commitment to
openly reflect upon the inevitable ethical dissonance created will shape the ethical
landscape we create and the ethical legacy we leave.
The next chapter will outline the philosophical orientation of this work and offer a
foundational framework of ethical understanding and interpretation that underpins
the methodology used.
41
CHAPTER 2
AN ETHICAL ORIENTATION – SITUATING ETHICAL UNDERSTANDINGS
Introduction
‘Ethicists tend to leave the ‘facts’ of clinical medicine to the doctors; their
task is then to apply elegant and compelling arguments drawn from first
principles of ethics to these undisputed and indisputable facts. Unfortunately
when the relationship between clinical medicine and ethics is conceived in
this way, the result is a very sterile discourse’ (Hoffmaster, 1991. p.213).
Prior to exploring the emergent ethical issues presented by the routine institutional
practice of prenatal screening, or considering the role of ethics in shaping a response
to the perceived moral challenges within, a clear account of ‘ethics’ as it is
understood for the purposes of this research must first be articulated.
According to Beauchamp and Childress (2001, p.1), ethics is best understood as a
‘generic term for various ways of understanding and examining moral life’. Within
these ‘various ways’ there are many conflicting and competing accounts of ‘ethics’
based on different starting presumptions, offering differing explanations of what
ethics is, how it ought to be practised and what its purpose and potential is. Clearly,
the starting presumptions, expectations and understandings we have of ‘ethics’
critically influence how we attempt to ‘do’ ethics, yet as Isaacs (Isaacs, 2003, p.3)
notes, the most fundamental question of ‘how ought one to understand ethics?’ is
largely unarticulated and simply taken for granted as a generally shared and
unproblematic view. However, as flagged by Beauchamp and Childress (2001, p.1)
above, ethics is not so simply categorised as one way of thinking, but rather
incorporates multiple perspectives and foundational assumptions.
Within the multiple definitions and prescriptions of what ethics is, the understanding
that arguably dominates the medical and bioethics literature is that of a ‘theory
centred’, knowledge based, abstract and generalisable application of moral
42
principles. Such principles10F
11 or theories may be held as points of reflection and
guidance when considering ‘cases’ that present an ethical dilemma or quandary
(Beauchamp & Childress, 2001), and may be applied to reveal a consistent,
considered and rational response to the ethical question ‘what ought I do?’ 11F
12. While
this notion of ethics appears to have permeated collective understandings12F
13 and
expectations in the field of medical ethics and bioethics, deep problems emerge
when ethics is practised as an epistemological quest for moral knowledge and
abstract truth. Most notably perhaps, is the attendant need to reduce the multifaceted
and complex realities of ethical engagement to the sterile prescriptions of what
Caplan (1982, p.8) describes as ‘moral engineering’, an approach which seeks to
overlay moral theories and principles onto the (unproblematic) ‘facts’ to reveal a
dependable and generalisable moral truth.
A further criticism of practising ethics as a form of detached intellectual and
scholarly inquiry, is that this approach segregates ethics as yet another expert
specialty, beyond the grasp of clinicians and patients who often lack the prerequisite
analytical skills or philosophical language deemed necessary to contribute to such
specialised discussions (Komesaroff, 1995; Pellegrino, 2003). In an era of increasing
pressure to embrace collaborative decision making between practitioner and patient
and to implement more ‘patient-centred’ practices (Stewart et al., 2003),
perpetuating the separation of ‘ethics’ as another expert outsider discourse is
ultimately unsustainable, as it potentially distances and excludes practitioners and
patients from full participation in ethical decision making. This familiar approach to
ethics, while firmly entrenched, may seem remote and disconnected from the ‘micro
– ethical’ concerns (Komesaroff, 1995) of the everyday clinic, and hence continues
to attract criticism. The emerging role of the Clinical Ethicist in facilitating the
creation of open moral spaces in organisations, and equipping staff and patients to
11 In Australia, the most commonly referred to principles of medical ethics are those proposed by Beauchamp and Childress (2001); autonomy, beneficence, non- maleficence and justice. It should be noted that Beauchamp and Childress do not regard the four principles as coherent ‘theory’, or prescriptive requirement, but rather a framework to initiate broader contextualised discussion. While this ‘Georgetown mantra’, as it is often referred to, has been heavily critiqued in North America and Canada, it still permeates the majority of professional codes of practice and conduct, and dominates the medical ethics discourse in Australia. 12 It should be noted that the ‘I’ of medical ethics literature predominantly refers to the practitioner ‘I’, rarely the patient ‘I’(Dodds, 2000). 13 And notably numerous Australian health care professional Codes of Ethics.
43
make morally informed decisions through education and creating appropriate policy
frameworks (Silverman, 2003, Walker,1998), is not yet well established in
Australian public health care but may be a future source of ethical organisational
reform.
An alternative philosophical framework to the detached, objective,
epistemologically centred approach to the ethical described above, an alternative
ontologically centred approach defines the ethical as situated within a foundational
framework of understanding that reflects the fundamentally social and relational,
subjective and engaged nature of human encounters. While the former approach
seeks to articulate those rational theories and principles that might anchor the ethical
form of life as one of rational deliberation and decision making, the latter
phenomenological account with its emphasis on acknowledging the hermeneutics of
making meaning, seeks to intentionally embrace the deeply embedded and
subjective nature of being that shapes individual moral decision making.
The latter account is grounded in the phenomenological or hermeneutic traditions
articulated by Martin Heidegger, Hans George Gadamer, Paul Ricoeur and Maurice
Merleau-Ponty. However, the phenomenological foundations may be further
informed and extended by a rich diversity of influences and contributions on which
fuller, contextualised ethical understandings are built. The understanding of ethics as
a relational, subjective, dialogical, and power directing encounter, incorporates
insights from many quarters enriched by the work of scholars across a range of
academic traditions. The insights of phenomenologists mentioned above permeate
this stance, as does the work of English speaking philosophers such as Charles
Taylor and Stephen Toulmin. Identity and narrative scholars such as Jerome Bruner
and Hilde Lindeman, and feminist philosophers such as Susan Sherwin, Rosemary
Tong, Margaret Urban Walker, and Carol Gilligan also contribute in significant
ways to enrich an account of an engaged ethics. (Abbey, 2004; Bruner, 1986, 1991;
Gilligan, 1982; Lindemann-Nelson, 2001; Priest, 1998; Taylor, 1988, 1989; Tong,
1998; Toulmin, 1990; Walker, 1993, 1998, 2003).
44
The relational, embedded approach to ethics that will be embraced in this work is
therefore not the detached, discursive or observational account founded in modern
analytical philosophy, but rather an expressive, engaged, situated and transformative
account. Once we embrace the particular ontology of the self as related, dialogical,
interpretative, and embedded in multiple contexts of history, culture, language,
relationships, biology, time and spiritual horizons it becomes apparent that, while
there may be shared moral frameworks, each individual has a unique and particular
moral experience. The unique culmination of these layers of embeddedness shape
individual moral frameworks for patient and practitioner alike and subsequently
defines the plurality of ‘goods’ we affirm. It is the fusion of these multiple goods
that determines how we interpret the ethical significance and meaning of life events.
While strong individual moral frameworks are formed, these inextricably overlap
with the shared social and moral space. It is therefore through accessing these
multiple layers that fuller ethical understandings may be built and transformative
ethical response may be forged at both the individual and societal levels.
A workable applied ethics research framework that incorporates the multiple voices
above is offered by Isaacs and Massey (1994), who propose that engaged ethical
encounters have four dimensions; the appreciative, the appraisive, the hermeneutical
(interpretive) and the transformative. While traditional philosophical approaches
seek theoretical solutions, Isaacs and Massey (ibid) propose that applied ethical
questions are invariably social, not solely intellectual, and therefore invite practical,
not solely theoretical responses. Through embracing the four dimensions above the
ethical question considered becomes ‘how can we respond?’, rather than the
detached individualistic ‘what ought I do?’ that emerges from the analytical model.
As perceptions and judgements are not value free, but rather reflect prior
contextualised understandings and experiences, the hermeneutical dimension invites
us to develop understanding of the multiple interpretive lenses that each stakeholder
brings. The appreciative dimension seeks to promote appreciation of each
stakeholder by actively recognising the others’ humanity, dignity and unique
presence. Isaacs and Massey (ibid) further note that it does not automatically follow
that we agree with, or endorse, every perspective. Rather the aim of any human
45
encounter is to appreciate and understand the multiple histories that shape it. The
appraisive dimension recognises that ethical engagement ultimately involves
judgement or evaluation. Finally, the transformative dimension calls upon us to take
action to prevent the unethical and respond with strategies for reform from an
informed position of appreciation and understanding. Thus applied ethics research is
focused on ‘continuing enhancing of the other and the self within the social
condition as it is actualised within specific situations, roles, practices, institutions
and cultures’ (ibid, p.2). The applied ethics framework proposed by Isaacs and
Massey (1994) thus provides a theoretically coherent and practically functional
structure from which to explore, describe, understand, explain and potentially
transform the ethical dimensions of clinical practice, in this case the particular
practice of prenatal screening.
In applied ethics research such as this, if we hope to understand individual moral
concerns and respond in a meaningful way, the importance of entering into dialogue
with another as a way of appreciating their unique perspective becomes paramount.
Hence, there is a critical link between the embedded, embodied, related and
dialogical view of ontology offered by the phenomenologists and the importance of
narrative as means of opening the moral space of shared understanding that
underpins ethical care. As narrative invites us to enter and appreciate each other’s
understandings, conversation and dialogue provides an appropriate entry portal into
the world of another’s experience and knowledge. Charles Taylor (1989, p.38)
further explains, ‘the nature of our language and the fundamental dependence of our
thought on language makes interlocution in one or other of these forms inescapable
for us’. The philosophical orientation adopted therefore supports a narrative research
methodology as the most appropriate mode of ethical inquiry. As the aims of this
research were not only to observe and describe, but rather to understand with a view
to transform, the Isaacs and Massey (1994) engaged approach to ethics, coupled
with a narrative method of inquiry is the most appropriate vehicle to critically
explore the complex, subjective and intersubjective factors which shape the ethical
dimensions of prenatal screening.
46
If, as Arthur Caplan remarks, ‘the resolution of moral issues demands more than the
ability to marry moral theory with the facts’ (Caplan, 1982, p.2), we must challenge
ourselves to define and actualise the ‘more’ Caplan refers to. An approach to ethics
such as that proposed by Isaacs and Massey (1994) above recognises that
interdependence and interconnectedness, as well as detached academic analysis, is
both the starting point and the goal of any ethical conversation. As ‘the individual
is whole only in a world of others’ (Cassell, 1991, p.26), an ethical framework that is
founded on this most basic human understanding may provide a more resonant and
accessible framework from which to respond to the shared ethical consequences of
individual and communal choices.
Comparing Ethical Perspectives
Ethics as Epistemology and Ways of Rational Knowing
‘Someone familiar with moral concepts and with moral judgements, who has
ample time to gather information and to think about it, may reasonably be
expected to reach a soundly based conclusion more often than someone who
is unfamiliar with moral concepts and moral arguments and has little time’
(Singer, 1972 cited by Caplan, 1982, p.7).
The most commonly accepted and practised view of ethics according to Margaret
Urban Walker (1993, 1998), reflected in Peter Singer’s comments above, is the
familiar account of ethics as articulating the logically determined ‘right’ or ‘best’
theory, in response to a particular set of circumstances. Under this modern
philosophical account, ethics is understood as the mastery of epistemic foundations
of theory to provide rational argument in determining the relative merits, limitations
and applications of such theory. Within this framework, the moral dimensions of life
do not flow from a comprehensive, reasoned, or personally reflective account of
morality, but rather, as Walker (1993, p.33) explains
‘On this dominant modern view, proper moral theory is instead a highly
specific kind of account of where moral judgments come from: a compact
code of very general (law like) principles or procedures which, when applied
47
to cases appropriately described, yield impersonally justified judgments
about what any moral agent in such a case should do. Invocations of theory
and principles in practical medical ethics have tended to reproduce this
conception’.
Flowing from a modernist account based on rational thought and abstract reason,
such theories may be methodically applied in providing consistent answers to the
ethical question “what ought I do”. A consequence of this epistemologically oriented
ethics that seems to dominate much of the medical and bioethics literature is that the
critical questions of ethics have become largely knowledge based, framed as
intellectual problems, and considered in the technical realm of experts. While ethical
problems are arguably more intimately shaped by the social context from which they
emerge, the goal of a theory centred, rationally driven ethics is to decontextualise
such problems, to get to the uncluttered intellectual and unchangeable core of the
problem. However, as Leon Kass (2002, p.63) explains,
‘when rational problem solving solves ethical problems, the solutions
themselves tend to be purely rational, often taking the form either of rules
or of ideals – rational rules that should govern conduct; articulable ideals
toward which practice should strive. Not addressed are moral sensibilities
and affections or habits and customs of moral agents’.
This rational, epistemologically oriented gaze which permeates so many prominent
schools of ethical thought including deontology, utilitarianism and arguably
principlism that dominates much of the ethical discourse will be considered in more
depth.
Beauchamp and Childress (2001), authors of the widely embraced approach to ethics
known as ‘principlism’, describe ‘normative’ ethics as the consideration of ethical
theory, principle and argument which forms a prescriptive guide to moral behaviour.
Within much of the biomedical ethics literature this normative approach regards
ethics as the application of critical philosophical reflection to those problems,
dilemmas and quandaries that are created by medical intervention (or in some cases
the with-holding of intervention). ‘Doing’ ethics under this framework becomes an
exercise in engaging with a long established critical, intellectual and scholarly
48
inquiry that can be best described as a sub branch of moral analytical philosophy.
Tacitly, this account implies that the unethical predominantly arises from a lack of
appropriate critical reasoning or the absence of rational thought (Isaacs, 2001).
While Beauchamp cautions that principles are a ‘useful but not canonical
framework for health care ethics’ (Beauchamp, 1999, p.148), the ease with which
these four ethical principles are translated into easily accessible, reductionist and
prescriptive ‘rules’ have led to their broad acceptance by practitioners (Pullman,
2005), leading Clouser and Gert (1999, p.156) to describe principlism as an
emerging, though unhelpful, ‘mantra’ or ‘ritual incantation’ in medical care.
Historically, the privileging of rational thought and epistemic knowledge as the
ultimate source of moral wisdom and authority emerged from the period of
modernity. Stephen Toulmin (1991) traces the roots of this commitment to
rationality from its emergence in the mid 1600’s through the philosophy of Rene
Descartes13F
14 , later cemented during the Renaissance through the work of Immanuel
Kant in the late 1700’s. Both philosophers essentially shifted from the humanist
understandings of ‘pre-modern’ times which accommodated plurality and
ambiguity, towards a commitment to the rational method of inquiry as a means of
securing intellectual certainty and harmony (ibid, p.9).
This critical shift in collective thinking, Toulmin (1991) argues, saw fundamental
changes in attitudes to four practical kinds of knowledge which transformed the face
of philosophy. These changes were: the elevation of the written word above the
spoken; the rejection of particular considerations in favour of universal ‘truths’; the
subjugation of localised knowledge in favour of the generalisable and finally;
rejection of contextually laden ‘timely’ understandings in search of timeless truths in
the quest to bring permanency and predictability to the changeable and unpredictable
human condition (ibid, p.30-34). The consequence of these shifts Toulmin argues is
that ‘practical philosophy’ became usurped and replaced by a sanitised and detached
14 In extending Euclid’s (300 BCE) mathematical ‘more geometrico’, Descartes proposed that all forms of knowledge, including philosophical knowledge could be derived from a clear, distinct and indubitable starting point, which he determined was the ‘cogito’. From this certain starting point, the phrase, ‘cogito ergo sum’, or ‘I think therefore I am’ emerged. The privileged mode of enquiry, and thus the privileged forms of knowledge consequently became those which derived from the logic and rational modes of enquiry inherent within, and required by, Euclid’s geometrical method.
49
form of abstract theoretical philosophy, the residue of which can be seen permeating
many aspects of medical ethics protocols today.
Interestingly, proponents of this dominant account rarely address whether
decontextualised rational considerations of the correct principles and theories are
indeed the ultimately appropriate mode of exploring or articulating the moral life.
Even Clouser and Gert (1999), whom Beauchamp credits with the ‘most sustained
and best argued attack’ (Beauchamp, 1999, p.151) on principlism, do not question
the ultimate privileging of rationality as a shortcoming. Rather, they focus on the
internal systematic inadequacies as the major flaw, exposing logical inconsistencies
within the approach but do not question either the reliance on logical theory to
consider the presumably unproblematic facts, or the potentially flawed inherent
ontological assumptions as potential weaknesses.
Thus the elevation of rationality and reason as the hypergood defining the ethical, as
opposed to considering reason as one of a plurality of goods marks the critical point
of divergence for those who seek to challenge this dominant conception of ethics as
an epistemological, theory based discourse (Taylor, 1989). MacIntyre (1984) further
claims that rationality itself is not necessarily an unchangeable fact, noting that we
must be open to the question of ‘whose’ conception of rationality is privileged in
any situation. Often, as Toulmin (1990, p.30) acknowledges, there is no ‘rational’
way to convert others to an alternative point of view. However, we cannot sustain
ignorance or dismissal of such disagreements. Rather we need an ethical framework
which accommodates a diversity of views in a spirit of tolerance. Yet the quest for
certainty in moral reasoning seems to have diminished our capacity and commitment
to achieve this creating a further barrier to those who seek to contest the rationalist
view, to re-humanise and re-contextualise ethical deliberation.
Hoffmaster (2006, p. 43) further critiques the privileging of rationality saying,
‘in this tradition of moral philosophy [according to Kant], rationality gives
human beings their unique moral status and their incomparable human
worth. Human beings are rational, but human beings also have bodies and
50
because they have bodies, they are vulnerable. In fact vulnerability is an
even more basic feature of our human constitution than rationality, because
while all human beings are vulnerable, not all are rational or even possess
the potential to become rational…………it is our very vulnerability that
creates the need for morality.’
Thus Hoffmaster concludes,
‘Vulnerability marks the limits of individualism, but the ethos of
individualism doggedly refuses to acknowledge those limits and instead
construes vulnerability to fit its assumptions and goals’ (Hoffmaster, 2006,
p.43).
As alluded to already, there are many criticisms of the dominant view of ethics, most
notably its tendency to reduce the muddy and complex realities of ethical
engagement to the ‘sterile discourse’ identified by Hoffmaster (1991, p.213). In the
quest for universal moral truth, critics of traditional philosophy claim there has been
a temptation to downplay the unique features of each case, as Toulmin (1990, p.210)
explains,
‘the axioms of modernity assumed that the surface complexity of nature and
humanity distracts us from an underlying Order which is intrinsically simple
and permanent’.
However, as experience tells us, the ‘intrinsically simple’ exists only to a limited
degree. Toulmin continues,
‘We may temporarily shelve the contexts of our problems, but, eventually,
their complete resolution obliges us to put these calculations back into their
larger human frame, with all its concrete features and complexities’.
Rather than viewing moral tension as being shaped by the socio-political context,
the dominant account of ethics instead seeks to place narrow boundaries around
51
what can be considered as legitimate ethical discourse, often reducing a complex
ethical question to the easier ‘medical problem’. In the case of prenatal screening for
example, the deeply complex social, personal and political issues of how we as a
society should care for people with disabilities becomes framed in the reductionist
language of individual choice, of an individual’s right to access or refuse screening
or to further exercise their autonomous choice to terminate or accept their disabled
child. Again, this approach sidelines the specific inherited problems and interpretive
lenses that medical practice has accumulated through its social, historical and
political development and superimposes philosophy onto medical practice without
considering that medicine is itself a ‘special kind of human activity’ (Pellegrino,
2003, p.5). By presuming certain choices are more palatable and rational than others,
by shaping which options are made accessible, by framing ethical decisions in
technical or medical language rather than ‘moral’ language, the social, political, and
cultural subjectivities of the individual participants who relate to each other within
the institutionalised practice of medicine may become silenced. The intrinsic and
extrinsic factors that constrain autonomy and choice, such as, access to care in a
business model of health care delivery, the cost benefit analysis that supports the
routine imposition of screening, the obvious hierarchical and institutional power
dynamics, entrenched societal views of technology as irrefutably good (yet as
Newell (2003) notes paradoxically defended as ‘neutral’), and persistent culturally
entrenched stereotypes of disability as tragedy, are just a few of the many real
influences that the dominant view of ethics may need to discount to reach the belief
in attaining a rationally derived and generalisable moral truth.
In rejecting the ‘engineering model14F
15’ of ethical engagement, Urban-Walker (1993)
claims that the often disappointing and inadequate moral debates generated from
such engagements are inevitable when ethics is practised as the consistent
application of intellectually derived code-like and universal theories. If faith in
systematically applied reason to deliver repeatable and universalisable ethical
outcomes is to be upheld, pressure to dismiss potentially complicating details is
inevitably created (Walker, 1993, p.35), and increasingly thin deliberations
15 See Arthur Caplan (1982). Mechanics on duty: The limitations of a technical definition of moral expertise for work in applied ethics. Canadian Journal of Philosophy. Supplementary Volume 8. p.1-18.
52
masquerade as robust moral debate. However, when context is not given sufficient
weight, consideration of the critical role that context plays in shaping the ethical
terrain and how individuals ascribe moral meaning are also lost.
Notably individualistic in its stance, posing the question ‘what ought I do?’,
problems are routinely presented as atomistic, detached and requiring a rationally
considered response. Although not always clearly articulated, the implicit
presumption of the traditional stance is that the ‘I’ considering the dilemma is the
practitioner or expert who is deciding the moral course for the patient (Dodds, 2000;
Donchin, 2001). As the required mastery of ethical theory often lies beyond the
realm of most patients and many practitioners who lack the expertise to decipher the
philosophical complexities required to reach an expert moral opinion (Komesaroff,
1995) the ethical has perhaps unwittingly become the tool through which patients
are further alienated from collaborating in decisions about their care. The paradox
here is that, while the Modernity project emerged as a revolt against ignorance,
exploitation and oppression, and sought to foster autonomy, freedom and equality,
the prevalent frameworks of bioethics may have unwittingly been instrumental in
closing down discussion of the pressing ‘micro-ethical’ concerns of daily clinical
care, of excluding those it sought to empower.
Although not specifically articulated, the ontology of the human self perpetuated
through the dominant mode of ethical engagement situates persons as primarily
detached rational thinkers, seeking a pure form of knowledge in answer to the
question ‘what ought I do’? , while failing to ask the question ‘what is it good to
be?’ (Taylor, 1988). Urban-Walker (1998) expands this point noting that, in her
opinion, this mode of ethical understanding positions human beings as purely
rational decision makers, whose decisions are by definition unencumbered by
emotions, relationships, social expectations or cultural frameworks of interpretation.
However, as Merleau-Ponty (cited by Priest, 1998) and Lakoff and Jackson (1999)
claim, in the first instance human beings experience and perceive the world as
embodied actors or doers. Embedded in a complex web of relationships, practices,
institutions and cultures that shape our subjective, interpretive frameworks, these
relational considerations are the ones that ultimately shape the meaning of the ‘good
life’ (Isaacs, 2007). Therefore, living an ethical life is not only achieved through
53
rational deliberation, although this may form part of how we ascribe order and
meaning, but rather is realised within the possibilities and limitations of our
embedded, embodied reality. Indeed, as Slovic, Finucane, Peters and MacGregor
(2004) observe, human decision making is simultaneously interpreted along the
parallel, and co-occurring lines of an immediate, affective experiential way of
knowing and a slower analytical system. However, in analytical philosophy, the
rational appears to have become privileged at the expense of the experiential or
emotional, leading Isaacs (ibid, p.3) to conclude, ‘whatever kind of being the
modernist self might be as detached, individualistic, reflective and purely rational, it
could be argued that it is not a human self; it is not a self that reflects the kinds of
beings we humans are’.
Analytical Philosophy and Science: Expert Outsiders Mutually Reinforcing the
Technological Imperative.
‘Old time progressive politics rested on a long term faith that science is the
proven road to human health and welfare, and this faith shaped the
technological agenda for half a dozen world fairs. This dream still carries
conviction for many people today: what underlies their continued trust in
science and industry is their commitment to the conception of ‘rationality’
that was established among European natural philosophers in the 17th
Century and promised intellectual certainty and harmony’ (Toulmin, 1990,
p.9).
That the analytical philosophical approach struggles to provide a practical
framework to respond to the ethical concerns emerging from technological progress
is perhaps not surprising when we consider the historical genesis of both disciplines.
While medicine, which is strongly influenced by the norms and conventions of
science (Pellegrino, 2003), and analytical philosophy may be viewed as occupying
very different perspectives on first glance, closer examination reveals that they have
much in common. In addition to being essentially academic endeavours that are
colonised by experts, science and philosophy have shared origins in the period of
Modernity. In tandem with developments in the quest for moral certainty emerging
54
from the philosophy of Descartes’ disengaged reason and Locke’s notions of a
punctual, objectified self 15F
16, developments in understanding the natural world
through rational inquiry and a commitment to logical explanations, away from the
religious and mystical interpretations, also began to take hold through the scientific
endeavours of Galileo and Newton. This foundational shift in thinking from the
religious, and experiential, to the objective and the logical, laid the foundations for
scientific- technological culture that dominates today, privileging objective, rational
and detached theoretical ways of knowing over subjective, embedded and
interpretive ways of knowing. Hence both philosophy and science share a
commitment to the systematic and rational explanation of the human condition
(Toulmin, 1990, p.9). Science is predominantly rationalist, and the dominant
paradigm in ethics is also rationalist (McKie & Gass, 2001).
It is precisely this shared origin of science and analytical philosophy, with a mutual
commitment to the elevation of universal, abstract and decontextualised knowledge,
that makes the dominant account of ethics as described above an inappropriate
framework to foster critical moral debate in medicine because it is premised on the
exclusion of pluralistic ways of knowing. In framing the ethical question in a
skeletal and decontextualised way, the dominant analytical bioethical approach is
fundamentally incapable of countering the biomedical gaze of science as it
ultimately shares the same ontologically flawed values framework.
The foundational commitment to science on which medicine is based invites
practitioners to believe in restoration to wholeness, with technology being the
dominant means through which to counter imperfection. Clearly technological
advances in medicine have brought significant gains to our understandings of the
human condition and overall health, making substantial contributions to human
wellness and wellbeing. Notable examples include the control of infectious diseases,
mass immunisation, reduced infant mortality, higher life expectancy and so on.
However, these gains have been accompanied by an increasing disposition to regard
the body as an object with science being the culturally iconic lens through which we
interpret bodily ‘malfunctions’. The gaze of technology, with its focus on the ‘body
16 See Taylor 1989, pp.143-176.
55
object’ as a malfunctioning machine, has seductively invited us to redefine our
understandings of what a suitable body is, and through the recruitment of prenatal
and genetic screening has subtly altered our expectations about what constitutes a
suitable body for our children to be born into.
Kass (2002, p.17) notes that ‘not all human dignity consists of reason or freedom’,
but proposes that the source of human dignity is the shared acknowledgment and
appreciation of the undeniable particularities of each person. Therefore, an
alternative ethical response that embraces the contextual characteristics in which
ethical decision making occurs and accommodates the relational, social, cultural and
historical embeddedness of such decisions is sought. Such an account must also
accommodate the realities of medical practice as firmly situated in the personal oral
account, embedded in the concrete and the local, and strongly set in the here and
now. Kass (ibid, p.73) further invites us to ‘think less about doctrine and principles
and the rules to govern behaviour, more about education and institutions and what
sort of people we produce’.
While much first world bioethics appears to centre on respect for autonomy,
safeguarding it against imposed violations of human will, Kass (2003, p.5) argues
that the ethical and moral dangers of unreflective technological progress arise not
from coercion and the imposition of foreign values, but rather from embracing the
firmly held values central to our post-modern way of thinking. Cultural reverence to
technological progress, privileging the economic and commercial drivers of health
care, the cultural canon of individual choice as moral arbiter, and acquiescence to
the inevitability of progress and its consequences (even if we view them with some
trepidation), are some examples of what Kass (2003, pp. 38-49) cautions us to be
wary of. Therefore we must strive to find a balance between potentially unbridled
‘scientism’ and the practical wisdom we need to cultivate and moderate the humane
realisation of the many goods both promised and delivered by technological
advances.
56
Ethics as Embedded and Transformative - Re-humanising and Re-contextualising
the Ethical Agenda
‘We can reconcile the twin legacies of the exact sciences and the humanities
only by a change in direction; and for that we must first see clearly how the
agenda of modern thought over reached itself. By now, it will be clear that
we need to balance the hope for certainty and clarity in theory with the
impossibility of avoiding uncertainty and ambiguity in practice ’(Toulmin,
1990, p.175).
‘Medicine being simultaneously the scientific and humanistic study of man
cannot escape being based in an explicit or implicit philosophy of human
nature’ (Pellegrino, 2003, p.10).
Ultimately, the medical condition is embedded in the human condition and while
moral concepts, principles, and arguments may be appropriate anchor points from
which to direct and guide ethical conversations (Beauchamp, 1999; Pullman, 2005;
Walker, 1993), such principles form only part of the whole ethical conversation, a
conversation which rightfully begins and ends with the deeply contextualised
relational encounters between staff, patients and the organisation (Beauchamp, 1999;
Pullman, 2005; Walker, 1993).
If as Toulmin (1990) believes, philosophy has found itself ‘sidetracked’ by the
dominant rational mode of inquiry, and if the underlying cause of this detour is a
fundamentally flawed account of ontology or being (Isaacs, 2007; Taylor, 1988,
1989; Walker, 2003), our initial task in articulating a different way of doing ethics is
to give a more appropriate account of the ontology of the self. Experience illustrates
that moral understandings are always interpreted and deeply embedded in a
particular time, history and context, all of which creates a unique, not universal,
basis of meaning. Rather than being externally imposed upon the human condition,
moral understandings emerge and radiate outwards from the human condition.
Acceptance of these realities must form the bedrock of any ethical framework
57
adopted. Therefore, recovering a more appropriate view of ontology is a critical
initial step in articulating a more responsive ethical framework.
Recovering Ontology at the Core of Medical Ethics
Unlike the disengaged, rational and analytical self portrayed in the dominant model
of philosophy and perpetuated in science, Taylor (1989) suggests that the human self
is rather an actor or doer, projected into a complex world in which they seek to make
and find meaning. Capable of interpreting their world and their place in it, human
beings are also capable of creating and re-creating, interpreting and re-interpreting
both themselves and others. Therefore, a unique aspect of the human life is the
capacity to change, grow and become. An individual’s moral knowledge may be
considered not to be static or completely objective, but constantly evolving and
subjectively interpreted. The key failings of the dominant approach may be
summarised as follows:-
• It promotes an overly individualistic and detached view of human
ontology which fails to recognise the situated, interconnected and
engaged nature of human being and becoming (Isaacs, 2007, p.3).
• It entrenches a flawed ‘decisional’ rather than relational approach to
interpreting the moral. In accentuating ethics as a decisional process,
other significant features such as the particular, individual and
conditionalised nature of the good life may become overlooked.
• It falsely elevates the singular value of rationality to that of a
hegemonic ‘hyper good’ when for most people, the good and morally
coherent life is constituted by the fusion of a plurality of goods
(Taylor, 1989). Such goods are socially created and accessed and are
dependent upon a particular time and context that may not exist
independently of this context.
• It provides an inadequate account of the subjective and interpretive
nature of individual morality.
58
Recovering a more appropriate ontological basis is therefore a critical initial step in
promoting a more responsive ethical framework in health care. As previously
suggested, such an account may be found in the phenomenological philosophical
tradition, the key features of which Isaacs (2003) summarises as follows:
• The human self is not primarily a reflective thinker but an actor or doer,
projected into a complex world, seeking to find meaning.
• The human self is embodied, hence the lived experiences of each person is
significantly mediated through the embodied nature of their being (Lakoff &
Johnson, 1999). This reality has ethical implications in understanding how
physical illness and medical intervention ‘to’, or ‘on’, the body impact
holistically upon personal ethical wellbeing.
• The human self is embedded in the world on multiple levels, these being:
(i) in a natural world, physically, spatially and biologically.
(ii) in a social world of multiple relationships, cultures, politics,
economies, histories, nations and communities all of which shape
moral understanding and identity.
(iii) in a temporal space with strong notions of past (history and memory),
present and future (imaginations and possibilities).
(iv) in language that mediates our relationships with others, our
understandings, shapes our identities and allows us to articulate our
future becoming
(v) in a spiritual horizon that gives direction and meaning to life.
• Human beings have the capacity to be and become, to interpret continuously
both themselves and their place in the world.
Isaacs and Massey (1994, p.2) further suggest that ‘the overall point or purpose of
applied ethics is practical and involves creating and sustaining relationships which
mutually recognise the needs, interests and aspirations of all participants
(stakeholders) as “ends in themselves”’. Ethical encounters are therefore rarely the
59
result of the external application of abstract philosophical reason upon the human
condition, but rather emerge and radiate outwards and upwards from the human
condition.
An Applied Ethics Framework for Research
Unlike traditional narrow philosophical frameworks, the ethical framework that
underpins this research is inclusive and multidisciplinary, incorporating a range of
complementary and interwoven understandings. This responsive style of ethical
analysis articulated by Isaacs and Massey (1994) describes ethics as primarily a
question of understanding and transforming human actions and practices. Therefore,
as a transformative approach, the features of ethical encounters may be defined as
follows:-
• Ethics transforms the human condition
• Such transformations are first achieved through self transformation
• Ethics has a social and relational dimension
• Ethics acknowledges personal interpretive frames, i.e. persons are
‘conditionalised’
• Ethics involves agency and power, hence ethics has a political and economic
dimension
• Ethical encounters occur in relationships and culture that are shaped by
history, so ethical engagement is also ‘historicised’.
(Isaacs, 2001; Isaacs & Massey, 1994)
As flagged earlier, a sensitive and practical framework for applied ethics research
that incorporates the multiple understandings discussed above has been proposed by
Isaacs and Massey (1994). In considering the ethical, Isaacs and Massey proposed
that four inter-related dimensions of the ethical encounter must be attended to. These
are posited as the appreciative, the appraisive, the hermeneutical (interpretive) and
the transformative. While philosophical approaches often seek theoretical solutions,
Isaacs and Massey (ibid) propose that applied ethical questions are principally social
(not solely intellectual), and therefore invite primarily practical (not only theoretical)
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responses. Thus the focus of an engaged, relational and transformative ethics
framework facilitates ‘the continued enhancement and flourishing of both self and
other, within the lived reality of particular human relationships, practices and
institutions’ and seeks to create a practical outcome which is respectful of all
participants (Isaacs & Massey, 1994, p.2). It is thus a framework that sensitively
captures the social and intellectual, the particularities and commonalities of human
encounters.
In attending to the hermeneutical dimension, we are challenged to comprehend what
is really happening, to elicit the complex and multilayered understandings each
participant brings, to unearth the underlying assumptions and limits of individual
perspectives. As perceptions and judgements are not value free, but rather reflect
prior understandings and experiences, the hermeneutical dimension invites us to
develop awareness and appreciation of the multiple, compounding, and perhaps
contradictory, interpretive lenses through which each stakeholder interprets the
ethical. In actively attending to the hermeneutical Isaacs (1998, p.9) explains,
‘ ..there is a need to disclose the initial understandings brought by the
participants to the encounter; there is a need to explore the assumptions and
limits to such understandings; there is need to consider which interpretations
seek to claim hegemony and the basis for such claim; and there is a need to
consider the extent to which a proposed understanding meets the conditions
of inclusiveness and situational “fittingness”’.
The hermeneutic further focuses our attention on the situational; the dynamic
interactions between participants and their contexts or situations. Awareness of the
mutual interaction between a person and their environment is highly pertinent to this
research as ethical decision making in clinical care is pursued within the constraints
of our embedded, embodied reality. It is also clearly constrained by its situatedness
within an institutionalised paradigm of medical practice that may inhibit or deny a
person ability to explore their preferred choices. Therefore, if the purpose of this
research is to articulate ways to support ethical decision making, and create ethically
robust practices within ethically sound organisational infrastructures, we need first
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to understand the situational factors that restrict our capacity to achieve this. Thus,
the hermeneutic invites us to embrace the particular, contextual approach to moral
reasoning, to illuminate critical understanding of which factors are shaping the
human condition and, hence, the ethical condition embedded in it. As ethical
encounters happen between people, applied ethics research must embrace the
pluralities of how individuals interpret a given situation. In terms of this research,
exploring the hermeneutic dimension was achieved through individual conversations
with each of the participants. Through the exploration of these individual accounts,
and exploring their links to the broader contexts in which they are embedded, a
fuller understanding of how the practice is received by women and offered by
practitioners may be elicited, providing a stronger basis from which ethical decision
making may be supported clinically.
The appreciative dimension calls upon us to approach each ethical encounter with
an attitudinal disposition of appreciation, care and concern. As Isaacs (2003) notes,
the decision to take an appreciative stance, or dispositional interest, compels us to
actively recognise another’s humanity, dignity and unique presence. In doing so we
are enabled in our ability to relate to another’s complexity, particularity and unique
humanity. In addition to considering where others stand in relation to ‘the good’,
attending in an appreciative way also consciously calls us to appreciate where we
stand in relation to them, initiating the ethical encounter from a stance which
acknowledges our shared humanity. Such willingness to enable the other to reveal
themselves deeply rather than superficially reduces ‘strangeness’ and opens a shared
moral space. In terms of this research, in attending to the appreciative dimension, I
sought to understand the stories of the participants within the broader personal,
social, political, economic, historical and institutional contexts that gave shape and
situational meaning to their individual account.
The next dimension of ethical engagement advocated by Isaacs and Massey (1994)
is consideration of the appraisive dimension which recognises that ethical
engagement ultimately involves some sort of judgement or evaluation. In
considering the literature surrounding the social and ethical aspects of prenatal
screening the appraisive question for this research was initially ‘Is the biomedical
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response to the ethical concerns about prenatal screening responsive to the concerns
of stakeholders?’ In researching the existing literature, and incorporating the
individual experiences of research participants, further appraisals were being invited,
i.e. if current ethical protocols are lacking in some way, ought we respond to restore,
broaden and strengthen these protocols? If women are not being supported to reach
an informed understanding regarding the use of this technology, what barriers exist?
Can these barriers be overcome, or even should they be overcome? Do we
communally value informed decision making for patients in medical care and if so
what lengths should we go to in order to ensure its realisation? In answering these
questions, we are brought to the fourth and final dimension of Isaacs and Massey’s
(1994) applied ethics framework, the transformative.
The transformative dimension calls upon us to respond to the unethical with
strategies for reform, from a position of informed appreciation and understanding.
While understanding and appreciating a situation are necessary preconditions for
effective change, these insights alone do not suggest ‘how’ change should be
effected. Therefore the transformative dimension invites to us forge a practical
response mindful of the existing limitations of organisational and individual
priorities and resources that dictate which transformations are achievable. Isaacs and
Massey (1994) further acknowledge that the processes of change can often be
embedded in resistant cultures, hence,
‘Where the ethical situation is symptomatic of entrenched social practices,
institutional settings or hegemonic cultures, strategies of a more
comprehensive kind such as critical social inquiry, education, policy
formation, legislation, or social action may be more appropriate’ (ibid,
p.12).
Thus in addition to individual transformation, organisational reform at the macro
level of legislation or policy reform may be called for. Potential transformative
responses to this study are more thoroughly discussed in Chapter Ten.
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Clearly these four dimensions are not realised in a hierarchal or linear way, but must
be considered simultaneously, as each informs the other. They are interconnecting
threads that weave in and around each other in a dynamic fashion. Therefore, the
unique strength of this multifaceted framework is its capacity to respond to the
diverse and complex moral, social and educational issues that emerge from
multidisciplinary research such as this, in a way that more rigid frameworks could
not.
Narrative and Ethics
‘Narratives in moral thinking come before, during, and after moral
generalities (whether of theory, principle, or basic moral concept). They
permit and invite full exploration of what often seems neglected or devalued
on the engineering model: specific histories of individual commitment, of
relationship and responsibility, of institutional practices and evolving moral
tradition…...Emphasis on narrative construction pulls in the opposite
direction--from premature or coercive streamlining of cases toward
enrichment of context and detail’ (Walker, 1993, p.35).
The Moral Significance of Narrative
A significant feature of applied ethics research is that it recognises individual
participants as having unique personal moral values and experiences, all of which
are embedded in their particular historical, cultural, political, economic and social
contexts. Consequently, there is not one rational way to be, but rather a wide
plurality of ways, hence the ‘goods’ we seek are not singular but rather pluralistic.
From a research perspective, if we hope to hermeneutically and appreciatively
engage in another’s story, we may only access this unique perspectival stance
through listening to their voice. Thus if ethics is fundamentally embedded in
relationships, and if we are as Taylor (1989) and Bruner (1991) claim essentially
narratively constructed and dialogical beings, then voice16F
17 must lie at the heart of
ethics (and ethical) research because language underpins our ontological
understandings as moral beings. As shared understandings are sought, the language
17 Among the various voices, the ‘voice of reason’ is just one of the many contributing voices to be heard, rather than the dominating voice.
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and discourse that shapes meaning in this context becomes a central focus of ethical
enquiry. Therefore dialogue and narrative analysis form the central strategies of this
approach which seeks to uncover tacit meanings and understandings within the
broader social and particular individual contexts.
Isaacs (2007) explores the link between language, context and moral engagement
saying,
‘Language makes possible our being and becoming. Language mediates the
good life. But language is itself mediated through others. And such
encounters are only possible because we are, or stand in conversations with
these others. We are, accordingly, dialogical beings and our being and
becoming is significantly that of a dialogical being and becoming’ (Isaacs,
2007, p.7).
In considering how human beings construct meaning from the experiences that
weave the fabric of their everyday lives, Bruner makes the point, ‘we organise our
experience and our memory of human happenings mainly in the form of narrative –
stories, excuses, myths, reasons for doing and not doing, and so on’ (Bruner, 1991,
p.4). Andrews further reiterates this point claiming that, ‘if we are constructed by
stories, or are storytellers by nature, or perhaps both, then narrative must surely be
a prime concern of social research’ (Andrews 2000, p. 1).
Thus narrative invites us to enter into the being and becoming of the other in the
totality of their embodied and embedded realities. It opens the possibility of sharing,
understanding and appreciation of the complex and unique lived reality and plural
moral frameworks that are unique to each human self. It further enables the
expression of experiences of loss, suffering, or oppression to be voiced, especially
by those who may feel disempowered or silenced. Finally, narrative opens up new
meanings, new possibilities and new sensibilities for collective and individual moral
insight and growth. Therefore, narrative methods of research complement the ethical
orientation of this work, opening a fitting way to explore the richness, particularity
and uniqueness of individual experiences. In other words, dialogue opens a moral
65
space to particular ontology, and as this research is concerned with exploring
particular experiences as shaped by broader social contexts, a narrative method of
inquiry practically and theoretically supports the ethical orientation of this research.
Importantly though, narrative is widely recognised as significant in enhancing
ethical understandings (Brody, 2002; McMillan & Gillett, 2002; Tomlinson, 1997;
Walker, 1993, 1998). As sharing experiences through dialogue may improve our
common understandings and open us to the rich complexities of each others lives,
our ethical judgements may be better informed. Tomlinson (1997) further notes that
narrative awakens our moral sensibilities, so that we can better appreciate any
perceived ‘wrongfulness’ of the story being told. Thus narrative and dialogue are
pivotal in shaping the ethical agenda (Taylor, 1989; Widdershoven & Smit, 1996).
Why Ethics?
‘This technology turns every user into a moral philosopher as she engages
her fears and fantasies on the limits of mothering a fetus with a disability’
(Rapp, 2000, p.128).
The title of this work firmly positions it as applied ethics research. The questions
raised by the routine implementation of prenatal screening are ethically significant
because they potentially have an impact on human being and becoming that reaches
beyond the obvious individual consequences. Prenatal screening impacts ethically
upon the status of new human life, on the lives of mothers, couples and families, and
on society generally in terms of the human values that are supported or denied by its
practice.
If the moral form of life is intimately entwined with a sense of the indisputable
uniqueness and ‘inalienable preciousness’ and dignity of each human being as
Raymond Gaita (1999, p.4) suggests, then the critical questions raised by prenatal
screening technologies such as, who is permitted to be born, under what
circumstances and conforming to which pre-conditions of entry to the human race
are imposed, are inherently ethical in nature because they strike at the heart of our
66
understandings of what it is to be human. To be allowed to exist, for life to be
valued in all its diverse forms solely because it is human life, to be given the chance
to grow and become, to live an embodied, embedded life may no longer be taken as
a human good. With the advent of prenatal screening technologies, the creation of
life may no longer be regarded as a matter of biological chance or of divine mystery,
but increasingly in the mechanical, biological model, viewed through the
reductionist lens of science, nascent human life may become objectified, leaving it
open to technological manipulation and control. This previously untouchable and
seemingly random natural process now falls under human scrutiny, judgement and
control.
Consequently, notions of personal ‘choice’ and preference have become further
entrenched into our reproductive expectations. Not only can we choose when or how
many children we have, there is now a growing expectation that we can also choose
which type of child we are willing to accept. Such choices, framed in socially
entrenched prejudices governing which traits are desirable or undesirable in our
offspring create a moral space in which the destruction or removal of such a life
seems the technically and philosophically rational thing to do. When the ethical
nature of ‘choice’ is considered within an analytical philosophical framework,
rationality becomes the ultimate arbiter of which choice is better, or more rational,
than another, but as MacIntyre (1984) challenged earlier, whose rationality should
we privilege? In trying to forge humane and ethically responsible use of this
technology, will we make the realisation as Kass (2002, p.17) does that ‘not all
human dignity consists of reason or freedom’.
The choices offered or denied, however, are not ours alone to pursue. In order to
make these technologically mediated choices a practical reality, individuals are
dependent upon the technical expertise of others. Clearly technology has brought
significant gains to our understandings of the human condition; however the
potentially dehumanising gaze of technology, driven by a pursuit for perfection and
the rejection of the imperfection of disability, cuts to the core of human dignity and
is already blurring the boundaries of the sanctity, or preciousness, of human life.
We now have the knowledge to detect and diagnose certain disabilities prenatally
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and the power to ‘prevent’ the presumed pain and suffering that accompanies them.
Tentatively ‘wanted’ and ‘planned’ children may become unwanted and unplanned
on the strength of a test result (Asch & Wasserman, 2005; Katz - Rothman, 1986).
While some limited conditions may be treatable prenatally, couching prenatal
screening as a means of promoting such early intervention is disingenuous because
the genetic anomalies targeted are, as yet, inherently ‘unfixable’.
With pregnancy and parenthood taking on the overtures of a well executed project,
Kass remarks, ‘ a society that when it does procreate, that sees its children as
projects rather than gifts is unlikely to be open to the question of meaning and
dignity of procreation’(Kass, 2002, p.20). Through technology, we have been
invited to redefine our understandings of what a suitable body is, and for some, the
expectations of what constitutes a suitable body for our children to be born into have
been significantly influenced by access to prenatal and genetic screening. Indeed
some commentators argue that we parents have a moral obligation to choose
children with the best genetic prospects, or even intentionally enhance the genetic
makeup of their future children where technically possible (Aldred, Savarirayan, &
Savulescu, 2003; Green 1997; Savulescu, 2001). Rather than accepting the
wholeness of humanity as incorporating differences, we are perhaps swayed by the
promise of technologically mediated perfection for our children. However, as
previously discussed, our bodies are not merely objects or machines; they are the
site of our human being in the world. As such, any purely mechanistic view of
disease, illness or imperfection detached from the ontological realities of being, will
fail to incorporate the essential humanistic understandings, of the deeply connected,
embedded and relational realities that define the human condition. When
mechanistic understandings of the body are coupled with a similarly mechanistic
approach to ethics, the creation of the required open reflective moral space will be
stifled.
While Kass (2002, p.10) was commenting on the use of human embryos as raw
materials for use in medical research when he stated, ‘we are desensitised and
denatured by a coarsening of sensibility that comes to regard these practices as
natural, ordinary and fully unproblematic’, his comment could similarly apply to
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prenatal screening technologies. We should be equally wary of embracing ‘soft’
technologies, such as the non-invasive forms of prenatal screening that encourage
us to judge who is worthy of being born because as Ruth Hubbard (1988, p.234)
notes,
‘We do ourselves an injury, as individuals and as a society, if we let fear of
difference tempt us to decide “who should and should not inhabit the world”
because it is hubris to pretend that we have the knowledge and foresight to
make such judgments well’.
We are faced with the ethical reality of balancing the indisputable goods that
medical technology can offer through the prevention of disease with the potential
harm that human life may be dehumanised and disrespected in the process. Charles
Taylor (1989) further observes that the difficulty in pursuing the ‘good life’ is often
not the need to discern good from bad, but rather negotiating the moral conflict that
arises when judging between competing goods. The questions of how we ought to
consider and respond to these competing goods are ethical questions, thus they
invite ethical answers, but what kind of ethics and how should we consider these
competing potentials for good? While medical science asks ‘can we’, ethics
uniquely challenges us to decide whether what we are doing is affirming or
damaging. Thus the ethical landscape we create and the ethical legacy we leave
doesn’t depend upon free rational choice so much as it depends on which choices are
made, or made available. Therefore, the role of ethics in our society is to provide a
framework through which the moral dimensions of our daily lives may be articulated
and understood, then incorporated into a constructive response to shape better lives,
or as Socrates implored (cited by Kass, 2003, p.75), to seek moral wisdom.
Chapter Summary
There are many core differences between the various approaches to ethics discussed
throughout this chapter. The dominantly accepted view on the one hand is a ‘top
down’ approach, an external expert discourse concerned with intellectual mastery of
the right principles and theories to be applied rationally and universally to guide
69
behaviour towards a generalisable truth. Conversely, the other is a ‘bottom up’
approach, starting with the richly contextual, nuanced, embedded and embodied
particularities of each individual, building the moral picture upwards and outwards
from each unique situation. The former is engaged in the detached intellectual
mastery of principles and ideals, while the other is actualised by participants
working towards an enhanced understanding which transforms human interactions
and practices (Isaacs, 2003). While the range of philosophical theories and practical
approaches may enrich our ethics knowledge in different ways, as the ethical
orientation of this work aims to produce research that is responsive, collaborative,
inclusive, transformative and empowering, to promote ethics as generally accessible
and practically useful in real situations at micro and macro ethical levels, the thesis
more strongly resonates with the phenomenological view. In aligning this work with
the phenomenological stance, it is important to note that the significance and value
of reason and abstract thought is not rejected. However, the strong resonance
between the relational focus and ontological coherency of the phenomenological
account of the self with the ontological foundation of educational philosophy that
will be described later in the thesis17F
18 provides a strong platform for interpretation
and analysis.
If the moral goods we seek are shared through intersubjective relationships with
others, language must be acknowledged as significant in the actualisation of these
goods. As no two people will seek exactly the same life of meaning, significant
evaluations differ for each person. The most appropriate way to access each person’s
unique moral frameworks is, therefore, through attending to their particular
narrative, through inviting a shared dialogue. Consequently, ‘narrative’ must lie at
the heart of the ethical encounter. Attending to the ethical in health care therefore
requires us to step outside the thin morals of obligatory action bound by abstract
principles to understand the constitutive goods that frame collective and individual
moral decision making (Taylor, 1989).
A critical pre-requisite in crafting such a humane response to the many complex
ethical challenges inherent within prenatal screening technologies may begin with
18 See Chapter 9.
70
the rejection of the individualistic, detached and atomistic self that dominates
modern moral philosophy. Once we start to accept that the self is not essentially a
disconnected individual, but rather a deeply related, embedded, embodied, and
historically and culturally situated self, we can more accurately respond to the
intricately layered nature of human ‘being’. With this understanding at the core, we
will surely be in better position to develop more comprehensive, compassionate and
humane approaches to technology use.
In Chapter Three, exploration of narrative as an ethically and methodologically
appropriate research tool is explored in more detail. The link between narrative and
ethics is reinforced and the benefits, challenges and limitations of adopting a
qualitative, narrative research method of inquiry are considered.
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CHAPTER 3
RESEARCH THROUGH VOICE: A METHOD FOR EXPLORING EMBEDDED
UNDERSTANDINGS
Introduction
‘[We cannot underestimate] the importance of having research strategies
that can work with the narratives people use to understand the human world.
Although this perspective presents a problem for the research models to
which we have grown accustomed and in which we take pride, it opens up a
realm for understanding human beings that will, I believe, make our
research considerably more successful’ (Polkinghorne, 1988, p.xi).
This work seeks to explore a range of critical ethical questions emerging from
individual stakeholders experiences with prenatal screening. In terms of the applied
ethics framework proposed earlier by Isaacs and Massey (1994), this research may
be seen as attending to the hermeneutic, appraisive and transformative dimensions of
the ethical encounter. It is not therefore specifically concerned with finding ‘the’
definitive answer to specific research questions, or as Darbyshire suggests to ‘lay
out causal explanations in theoretical terms’ (Darbyshire, 1994, p.860). Rather, the
aim of this project is to embrace a hermeneutic approach which fosters deeper
understanding of the lived experiences of individual participants as a conduit to
uncovering the ethically problematic aspects of the prenatal screening protocols and
practices. In turn, new insights and possibilities from which to transform and
strengthen the ethically challenging aspects of prenatal care may be gleaned and
potentially relevant sites of future inquiry may be identified.
The previous chapter proposed an approach to ethics which centred upon ways of
understanding the unique and particular, embedded and embodied experiences of
individuals. In understanding the hermeneutically layered nature of human being
and becoming, the phenomenological account of ontology embraced throughout this
work further acknowledges the core importance of language and narrative in the
72
construction of the self as essentially a dialogical self (Taylor, 1988, 1989).
Language and narrative significantly mediate the plurality of goods we affirm
individually, but importantly, they also mediate and define the communal ethical
encounter. Inviting participation in a shared moral space, narrative accommodates
the pluralities of understandings of what is ethically ‘good’ and thus promotes the
emergence of collectively negotiated, respectful and inclusive ethical conversations.
As it is through such shared understandings that a more appropriate and inclusive
moral response may be sought when navigating the ethical tensions inherent within
the burgeoning practice of prenatal screening, a narrative research methodology is
most fitting to this research as it provides an ontologically coherent and ethically
inclusive means of hearing, appreciating and responding to the individual stories
offered.
This chapter will expand upon the crucial role of narrative in opening a shared
ethical space and outline the narrative method of inquiry and analysis adopted for
this research. The limitations of a narrative research methodology will also be
discussed.
Why Narrative?
[From Latin narrāre, narrāt - from gnārus, knowing]
‘Our ultimate goal as social scientists is to learn about the substance, make
theoretical claims through methods and learn about the general from the
particular. Individual action and biography must be the starting point of
analysis, not the end’ (Riessman, 1993, p.70).
‘The phrase “experiencing the experience” is a reminder that for us
narrative inquiry is aimed at understanding and making meaning of
experience. This is the baseline ‘why’ for social science inquiry. Why use
narrative inquiry? Because narrative inquiry is a way, the best way we
believe, to think about experience’ (Clandinin & Connelly, 2000, p.80).
73
‘perhaps we attain the truth of the matter only by stories’ (Zaner, 2005,
p.200).
Human beings are inherently storytellers, we interact with, and construct meaning
from, the narratives we create around our lives every day (Bruner, 1991;
Lindemann-Nelson, 2001; MacIntyre, 1984; Mishler, 1986; Taylor, 1989). We craft
our own narratives and appear in others’ narratives, co-authoring the larger
collective cultural narratives of which we are all a part (Bruner, 1991; Lindemann-
Nelson, 2001; MacIntyre, 1984). It is through narrative, therefore, that we reveal
our moral evaluations, create meaning in our lives and construct our own and others
identities (Andrews, 2000; Bruner, 1986; Lindemann-Nelson, 2001; Taylor, 1989).
Taylor (1989, p.47) further remarks that the ‘basic condition of making sense of
ourselves is that we grasp our lives in narrative’, concluding that narrative
represents an ‘inescapable structural requirement of human agency’ (ibid, p.52).
The central importance of narrative and language in constructing and mediating the
human condition is echoed by Mishler (1986) and further reinforced by Bruner
(1991, p.5) who claims that narrative not only represents reality, but constitutes it as
well. Indeed for Bruner ‘a life as lived is inseparable from a life as told … not
“how it was”… but how it is interpreted and reinterpreted, told and retold’ (1987,
p.31). Thus individual experience, our narrative accounts of such experience and the
ethical significance of narrative in framing our being and becoming are inextricably
linked. Indeed, narrative lies at the core of the ethical.
Educationalist John Dewey (1938, cited by Clandinin and Connelly 2000, p.2),
suggests that understanding is grounded in experience and prior learning, making the
further observation that such experience and prior knowledge always have both a
personal and a social dimension. The ontological orientation underpinning Dewey’s
claims significantly resonates with the phenomenological account embraced in this
work which acknowledges that meaning is shaped by multiple interpretive
frameworks. Thus Dewey (1938, cited by Clandinin and Connelly 2000) claims that
people may not be fully understood as individuals alone, but rather must be
considered in relation to their wider social frameworks. The deeply contextualised
and communally situated nature of individual experience therefore necessarily
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creates a direct entry portal into understanding the overarching social, cultural and
historical frameworks that shape the ethical dimensions of each individual’s
experience. A narrative research method of inquiry based upon engaging participants
in conversations about their individual experiences therefore provides an appropriate
vehicle from which to consider the research questions posed in this work. As
experience does not occur in a vacuum, each recounting of a person’s story is
necessarily situated in the context of past experiences, prior knowledge, future
imagined possibilities, in addition to individual and communal understandings that
lie on the continuum of personal growth. It is this continuum that shapes individual
ethical interpretations.
As embedded and embodied discourses, the study of personal narratives gives access
and insight into broader socio-cultural understandings (Clandinin & Connelly, 2000;
Laverty, 2006; Thomas, 1999, p.78) bringing together ‘past, present and future
meanings in an evaluative way’ (Bridle, 2004, p.135). Eliciting a personal narrative
is therefore a potentially powerful investigative tool which facilitates the mining of
the complexities and multiple layers of interconnectedness that define and guide
individual and communal moral frameworks. As Gilligan notes (1996, p.253) ‘voice
is the barometer of relationships because it connects the inner and the outer world’.
Within a theoretical framework which actively acknowledges the symbiotic
relationship between narrative and ethics, a narrative research methodology, as
adopted in this work, is not approached as an interrogative process, but rather one
which honours participants as having moral expertise in their own stories. By
allowing participants to speak in their own words, determine the flow of topics
explored, and emphasise or elaborate points of particular significance to them, the
complexity and particularity of each account can be preserved to more accurately
reflect their interpretations of their experiences (Strickland, 1994, cited by Bridle
2004, p.135). Thus narrative is both a product and a process of inquiry (Clandinin &
Connelly, 2000), a technique that emphasises the stories people tell to account for,
and make meaning from, events in their lives (Bryman, 2004). It is not the claim of
this research therefore to ‘give voice’ to participants but rather, more cautiously, to
75
hear, to listen and to forge an ethically informed response which is respectful of the
many and varied contributory voices present.
Qualitative methodologies, such as exploring personal narratives, lend themselves to
the provision of thick descriptions and comprehensive accounts, rich with context
and detail, which more rigid quantitative methods may exclude, as Charles Ragin
remarks,
‘Most quantitative data techniques are data condensers. They condense data
in order to see a big picture….Qualitative methods, by contrast, are best
understood as data enhancers. When data are enhanced it is possible to see
key aspects of cases more clearly’ (Charles Ragin 1994 cited by Hesse-
Biber & Leavy, 2006).
While such methods of inquiry have been criticised for lacking generalisability,
lacking intellectual rigour, or being biased or unreproducible (Hesse-Biber & Leavy,
2006; Tomlinson, 1997), it is not the aim of this thesis to produce or reproduce
objective or generalisable ‘data’. Rather the purpose of the narrative method
adopted in this research is to illuminate particular experiences from which potential
areas of wider research may be identified.
Acknowledging the hermeneutic layers of interpretation brought by each participant
is therefore pivotal in enhancing our understandings of the broader ethical
dimensions of prenatal screening. In considering the embedded nature of prenatal
screening, individual interpretations are significantly shaped by a range of
communally endorsed ‘master narratives’ (Lindemann-Nelson, 2001), or ‘canonical
scripts’ (Bruner, 1991). These collective canons of understanding including faith in
science as ‘transcending’ (Noble, 1999, pp.9-11), or in the context of this thesis, the
portrayal of disability as tragedy (Clapton, 2003; Reinders, 2000; Shakespeare,
2001), the belief in rationality as a source of moral agency or the prescriptive
expectations of how ‘good mothers’ ought behave (Lippman, 1991) combine to
further mould and dictate the practices, presumptions and ethical terrain of
technological intervention in pregnancy. A narrative research method more
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sensitively captures the situated social context of prenatal screening, illuminated
through the telling of specific, situated and individual accounts in a way that other
methods may fail. Hence, while the starting point of this research is the combined
personal experiences of mothers and health care practitioners of this cohort, due to
the deep and multi-layered nature of human embeddedness, these individual
experiences quickly spiral beyond the private particularities of each person, touching
extensively on the overarching social, personal, institutional, and ethical aspects of
screening.
Bruner (1986, p.11) suggests that qualitative and quantitative methodologies need
not be viewed as competitive discourses, but rather as complementary lenses, each
illuminating a different, though equally important part, of the whole picture. While
different modes of inquiry maintain their own very different standards of validity or
verisimilitude, each may inform, extend or challenge the understandings revealed by
the other. Bruner (1986, p.11) further cautions ‘efforts to reduce one mode to the
other or to ignore one at the expense of the other inevitably fail to capture the rich
diversity of thought’. Recognising the complementary strengths of different modes
of inquiry, while resisting the temptation to transfer the presumed rigour of one
mode directly onto the other, leaves open the prospect of seeing ‘possible formal
connections before one is able to prove them in any formal way’ (ibid).
Just as each member of this participant cohort brings a unique perspectival stance,
reinforcing Bruner’s (1991, p.3) claim that ‘knowledge is never point of view-less’,
the capacity of social researchers to objectively stand apart, detached from that
which they seek to give account of, must also be challenged. Riessman (1993, p.v)
notes ‘the construction of any work always bears the mark of the person who
created it’. The questions posed in this thesis have therefore been significantly
formed and filtered through the multiple interpretive ‘eyes’ of the researcher as
mother, former scientist, partner, educator, social researcher, friend, daughter,
sister , colleague and so on. In countless ways, these multiple interpretive lenses are
central in shaping why these particular research questions were distilled at the
expense of others. Hesse-Biber and Leavy (2006, p.15) further reinforce this aspect
of social research noting,
77
‘…social reality is not ‘out there’ waiting to be discovered and measured but
rather it is relational and subjective, produced during the research process.
The researcher is not assumed to be value neutral and objective, but rather
an active participant, along with the research subjects in building the
exploratory and explanatory knowledge. Likewise, the value of the research
is not based on whether it is replicable but rather how it adds to our
substantive knowledge on a particular subject’.
Thus it is clear that in social research of this nature, it is impossible to segregate the
multiple contributing individual interpretations from both researcher and participant,
from the ‘facts’ to produce a neutral account of the truth. The aim of this research is
rather, as Hesse-Biber and Leavy (2006) suggest, to contribute to our collective
substantive knowledge.
As situated, context dependent, qualitative research, the purpose of this thesis is not
to make far reaching generalisations about all women and all practitioners in
Queensland. Nor is it to quantify how many women have had fulfilling, distressing,
confusing or uplifting encounters with prenatal screening, nor to calculate how many
practitioners have solid understandings of the impact that embracing this technology
has in their patients’ lives. Rather, it is to enhance our understanding of how each of
these stakeholders experiences their role in the broader social framework. In turn,
these individual insights may add to our collective understandings of how the ethical
challenges of prenatal screening may be more successfully negotiated. The
importance of narrative in this process thus emerges not only as a means of
accessing and understanding the various stakeholder perspectives present, but as a
viable instrument to negotiate ethical transformation (Bruner, 1991; Lindemann-
Nelson, 2001; Walker, 2003).
The In–Depth Interview
‘The opportunity to tell one’s own story as one wants to tell it – in one’s own
voice – is a kind of grace’ (Frank, 1995, pp.134-135).
78
‘If we believe that social reality exists as meaningful interaction between
individuals then it can only be known through understanding others’ points
of view, interpretations and meanings. If meaningful human interaction
depends on language, then the words people use and the interpretations they
make are of central interest to the researcher. In –depth interviewing is an
appropriate method to gain access to the individual’s words and
interpretations’ (Minichiello, Aroni, Timewell, & Alexander, 1995, p.73).
The choice of in-depth interviewing as a narrative research technique reflects a
particular philosophical and methodological stance (Mishler, 1986) as outlined in
the previous discussions throughout this work. Engaging in an in-depth interview,
therefore, opens a window onto how individuals position themselves in the wider
social context (Minichiello et al., 1995; Widdershoven & Smit, 1996), illuminating
the ‘nexus of social relationships’ (Doucet, 2006, p.66) that shape the social and
cultural dimensions of, in this case, prenatal screening.
The impulse to narrate is inherent and provides the connection between ‘knowing
and telling’ (White 1980 cited by Mishler, 1986, p.145). Furthermore, as description
and justification combine in narrative, the ethical dimensions and context of each
person’s experience can be revealed (Widdershoven & Smit, 1996). As Minichiello
et. al (1995, p.61) note, it is through this conversation that the researcher can gain
access to and understanding of the ‘private interpretations of social reality that
individuals hold’. Thus, in-depth interviewing provides a valuable vehicle through
which to engage with an individual’s experiences, beliefs and interpretations and is,
therefore, an appropriate means through which to explore the questions of this
research.
In-depth interviewing can be seen as a conversation between researcher and
participant with a specific purpose, which is to explore perceptions of self, life and
experience (Minichiello et al., 1995). Minichiello et al (ibid) make the further point
that there are no concrete rules of how to conduct an in-depth interview, thus a
variety of strategies exist. These strategies range from standardised, highly
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structured questions, through to completely unstructured, recursive dialogue
between researcher and participant. On one end of this continuum, the rigid,
standardised questions of a structured interview format may impose too narrow a
focus on individual accounts. On the other end, the completely unstructured
approach could result in participants veering beyond the scope of the research to
recount experiences not central to the aims of inquiry. While rejecting a
standardised question interview format for this research may have reduced the
comparability of the interviews, a semi-structured question format strikes a balance,
preserving participants’ ability to freely contribute while not completely presuming
to limit the permissible experiences sought (Minichiello et al., 1995, p.64).
In opting for a semi-structured format, the flexibility to accommodate the dynamic
realities of the conversation was preserved, while the content and direction of the
interview remained focused. Cathy Riessman (1993, p.3) has commented that ‘…
respondents (if not interrupted with standardised questions) will hold the floor for
lengthy turns and sometimes organise replies into long stories’. The more flexible
format of a semi-structured interview, therefore, better supported a more thorough
telling of individual accounts. Consequently, in-depth interviews may become more
conversational in style, allowing the listener and teller the freedom to seek
clarification when either party felt it strengthened the discussion. While this
conversational flow may allow the researcher to influence the narrative told, the
primary aim of ‘listening’, and the focal point of participants ‘telling’, coupled with
the Listening Guide18F
19 analysis, which intentionally calls for researcher reflection on
this very point, supports the authenticity of participants’ account and lessens
researcher influence.
With the aim of encouraging respondents to stay ‘on track’, as suggested by
Minichiello et al (1995, p.82), an interview guide was developed as a back-up
prompt to keep the interview focused. The interview guide took the form of a scatter
list of topics such as that proposed by Minister (1991, p.37), compiled after a
comprehensive literature review, exploring the broader issues surrounding ethical
19 The Listening Guide will be more thoroughly considered on pages 89-108.
80
decision making in prenatal screening19F
20 (see Appendix I). The topics on this list
were arbitrarily arranged on the page, and provided a starting point for conversation.
Each individual was invited to choose a starting point, enabling the flow of open
dialogue which was clearly focussed on issues central to the research aims. Some
examples of the topics included in the list were voluntariness of testing, need for re-
assurance, ethical concerns, learning in a medical environment and informed choice.
While this method of presenting points for discussion is claimed to reduce the
impact of the researcher’s framework on the content of the interview (Minister,
1991), as the researcher inevitably influences which topics make it onto the list, it
is impossible to separate the influence of the researcher on any account given
(Glesne, 1999). However, while the researcher’s role may influence the scope of the
inquiry agenda pursued, adopting a semi-structured, in-depth interview within a
narrative framework did give participants the opportunity to articulate their own
stories in their own words, inviting researchers to think with rather than about the
stories offered (Frank, 1995, p.23).
Participant Recruitment
The cohort of this study included nineteen participants in all. The cohort comprised
of seven mothers who had undergone prenatal screening and had given birth to a
child within the last two years, alongside eleven health care professionals from
various disciplines involved in the support and education of women facing the
decision to embark upon prenatal screening. In addition, one disability support
group volunteer whose role was to provide telephone support to families who had
received a positive (or potential) prenatal diagnosis of Down syndrome was
interviewed. The rationale behind the selection of participants, in line with the
qualitative narrative methodology adopted, was to provide a pool of experiences to
heighten understanding and knowledge through the telling of specific but
comprehensive accounts20F
21.
20 This scatterlist was devised from research into the ethical dimensions of prenatal screening that emerged from previous honours research (Milligan, 2004). 21 The issue of how these findings may apply in a broader sense or whether the outcomes can be generalised across a larger community may be addressed through further research.
81
A purposive approach to sampling was adopted in which participants with a specific
experience were sought, rather than looking for a random, statistically generalisable
cohort. Purposive sampling is therefore useful for situations where a limited group
needs to be targeted and where sample representativeness is not of primary concern
(Neuman, 2000) with the intensive and focused interviews generated from purposive
sampling being ideally suited ‘for gathering insights, anomalies and paradoxes’
(Hoschild, 1981, cited by Neuman, 2000, p.198).
In designing the recruitment phase of this project, particular attention was paid to
participants being fully informed and consulted throughout the length of their
involvement. Interestingly, like the many women who entrust practitioners with their
‘informed consent’, one health care provider participant made the following
revealing remark on being asked to give her informed consent to participate in this
project.
‘Why do we have informed consent... …? I suppose it’s putting in a bit of a
check and balance, but it certainly doesn’t cover all aspects of risk, for
example, I couldn’t know as much about this project as you do….you have
the background, so when I sign the consent form , I’m entrusting you to
have some integrity …’ Midwife 4.
This comment strikes at the heart of a key issue being explored in this research. The
success of informed consent as a process for ensuring ethical probity ultimately
relies not on ‘information’ alone, nor on procedural checks and balances, but equally
upon the integrity of those involved. In giving consent, we ultimately trust others to
act with integrity in a responsible and respectful manner.
Clandinin and Connelly (2000, p.73) describe the initial phase of entering new
research and recruiting participants as ‘negotiating purpose’. This entails the process
of explaining the research, justifying and clarifying its point and hopefully making
the process meaningful to potential participants. With the aim of ‘negotiating
purpose’ in mind, an information pack was developed for participants (see Appendix
II A, II B) to outline the aims, risks, benefits and requirements of involvement in the
project prior to nominating. The information pack also included the topic list of
themes for discussion to enable potential participants to assess the scope and nature
82
of the project before committing to participate. A description of the expectations of
participation, coupled with a clear message that consent could be withdrawn at any
time and an open invitation for each participant to discuss the project with me at any
time were included in the information pack. The Information Pack also gave contact
details of Queensland University of Technology’s independent Research Ethics
Committee, in the event that any participant was concerned with any aspect of their
participation. Finally, all documents associated with the recruitment process were
approved by the University Human Research Ethics Committee as part of the ethical
clearance protocols of the university (UHREC Approval no.3911H- See Appendix
III).
Mother Recruitment
As previously noted, eligible participants from the mothers’ cohort were women
who had undergone some form of prenatal screening, either ultrasound, nuchal
translucency screening or serum screening in the last two years and who were no
longer pregnant.
After a radio interview about this project on ABC Brisbane in October 2005, several
women made contact and volunteered to participate in this research. Through these
initial contacts, a snowballing effect occurred which resulted in the recruitment of
the seven mothers interviewed. In response to their initial contact, an information
package was sent (Appendix II A). All eligible participants from the mothers’
cohort who were sent an information pack participated in the study. This mode of
recruitment was chosen as a risk management strategy to enable only interested
parties to volunteer. As each volunteer was in control of the contact they were in a
position to decline at any time minimising potential feelings of coercion to
participate. Women who were no longer pregnant were also chosen to reduce the
risk of unnecessary anxiety about the outcome of their pregnancy as this was already
known. As reflections of past experiences were being sought the risk of
psychological distress could be minimised. While directly sensitive questions were
not asked during the interview, if the interviewee raised sensitive issues they were
given the latitude to freely expand upon their impressions. All contributors were
83
made aware that all discussions were strictly confidential; hence pseudonyms are
used throughout the subsequent analysis and discussion.
Health Care Provider Recruitment
A direct letter of introduction with an information package (Appendix IIB) was sent
to a selection of health care professionals working locally in the field of antenatal
care and prenatal screening. The letter outlined details of the project and invited
practitioners to personally contact me if they were interested in participating. The
final composition of the health professionals’ group included three midwives
working in public health hospitals, three general practitioners working in private
practice, two genetic counsellors based in public hospitals, a geneticist, a midwife
educator and an obstetrician, also working in a large public hospital.
This method of recruitment does not ensure representation of the complete range of
possible experiences; however, the unique and particular collection of experiences
considered in this work may illuminate specific areas of practice which may suggest
further areas of investigation.
Ethical Considerations of Recruitment and Participation
While this project explores the ethical dimensions of informed consent in the
medical setting with respect to prenatal screening, significant ethical issues
concerning informed consent arise in the research process itself (Thorne, 2004).
Thorne (ibid) notes that in order to gain access and rapport, sometimes full
disclosure of the research goals and aims are not made saying,
‘self introductions are bound up with efforts to gain access, and the practical
motive, weighted heavily by investments of time, money and career, tends to
squeeze honesty to the side’ (ibid, p.162).
This point exposes a very real ethical tension within social research. Researchers
must ultimately make the judgement of how much information may realistically be
given. They are also immersed in a potential clash of purpose in which they are the
84
both the potential beneficiary of the research in a professional sense, but are also
often the sole arbiter of whether appropriate levels of understanding and
voluntariness are exhibited by participants. Additional considerations of whether
participants should have the final ‘approval’ on how their words are interpreted, or
whether consent should be re-established at various stages in the process raise
further ethical issues which shape the ethical tone of research. Finally if the research
is conducted in a way that causes participants to withdraw their consent, the desire
to protect the researcher’s considerable ‘investments of time, money and career’, as
Thorne (2004) notes above, may negatively influence researcher behaviour in an
attempt to protect the substantial professional investment made. In seeking to
sensitively and transparently negotiate these potentially competing considerations, a
research protocol that sought a genuine shared dialogue between myself and all
participants was developed. Every effort was made to ensure all participants were
competent and knowledgeable about the aims and potential outcomes of this
research. In addition, recruitment was specifically designed to be non-coercive,
giving control over contact to the participants thus ensuring, to the best of my
ability, that any collaboration was voluntary and intentional. By giving all
participants the final approval of their transcript, and by remaining in contact with
each person to elucidate particular points and to ask for further clarifications, the
potential for misinterpretation or misrepresentation was minimised.
However, just as administrative protocols of informed consent alone cannot address
all the ethical complexities of prenatal screening, seeking the informed consent of
research participants unearths similar layers of complexity. Thus, with respect to
informed consent to participate in research Thorne (2004) concludes,
‘By itself, the doctrine of informed consent does not do full justice to the
complexity of ethical judgement field workers confront’ (ibid, p.172).
As this project involved in-depth interaction with participants, covering issues with
the potential to invoke emotional responses, internal conflicts or professional
tension, the recruitment process and the actual interview was structured in a way to
enhance participant agency by controlling the flow of the topics covered. This
agency extended to a very clear commitment to participants that they would be given
85
the opportunity to prohibit use of any part of the interview that they later deemed
unsuitable. All participants were given a copy of their interview transcript with the
invitation to add further comments, or delete comments they wished to exclude 21F
22.
Confidentiality for both the mothers’ cohort and the practitioners’ cohort was critical
in the research design. For the practitioners, preserving confidentiality was
particularly important in the relatively small antenatal medical community in
Brisbane. For this reason mothers are identified with a pseudonym and practitioners
by a descriptor of their professional role such as midwife, obstetrician or GP etc.
Finally, while the mandated channels of ethics research approvals and committees
were diligently followed, complying with the technical, often legalistic requirements
that such committees requested did not necessarily capture the essence of trust,
integrity or moral obligation to honour each of the participants’ intention. The
intentions of these participants was to contribute to a mutually appreciative
understanding as a shared basis of practice and policy reform, negotiated from a
mutually respectful, inclusive and informed stance for the benefit all stakeholders.
The Interviews
Individual, in-depth interviews were held with all nineteen participants over a period
of 10 months from October 2005 through to July 2006. An open – ended approach
to questioning was adopted with all participants to enable them to direct the flow
and significance of what they felt was ‘worthy’ of sharing about the topics on the
scatterlist (Appendix I). For the women, their experiences of prenatal screening,
their understandings of this practice, their perceived barriers to ethical decision
making and an account of how they became educated about the prenatal tests
accepted or rejected were sought. For the health professional cohort, perspectives
were sought on what they felt the challenges were in delivering ethically sensitive
care in what is considered by some to be a potentially morally contentious practice.
Their insights into the perceived barriers to achieving ethical intervention in prenatal
22 Very few participants sought to alter the original transcript, mainly adding comments to clarify questions I had posed, or to strengthen or reiterate a particular point. No significant changes to the interview transcripts were requested by the participants.
86
screening and the potential links of patient education to informed consent were
sought.
In opting for in-depth interviews, as Laverty has similarly observed (2006, p.4), the
following underlying features are acknowledged:-
• Individual stakeholders have unique and particular insights into the
processes of prenatal screening as either a provider or recipient.
• The combined analysis of each of the nineteen stories told
contributed to the shaping of a larger, collective story.
• The end result of this process is that enhanced understanding of the
broader context may be made through the in-depth exploration and
telling of individual accounts.
The interviews lasted between 60 minutes and 90 minutes and all were recorded for
later transcription. For the mothers, the interview began with an invitation to tell the
story of their pregnancy, including the significance of prenatal screening in their
experience. For practitioners, the interview began with an invitation for each person
to clarify their role in prenatal screening protocols. After the initial invitation to
speak, both groups engaged in fluid and open explanations which flowed easily and
fluently through the many themes on the topic list. Beginning the interview with an
open ended question allowed the construction of answers, in collaboration with me
as listener, resulting in a flowing and meaningful conversation as described by
Mishler (1986). In that regard, the interview was co-constructed by both parties, by
the researcher providing a predetermined list of topics that were ‘on the table’ and
by participants collaborating with the research process as presented. Thus the jointly
constructed conversation and meanings that flowed reflected a particular dynamic
between two particular participants, at a historical point in time, a ‘snapshot’ as
described earlier.
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Transcription
‘All we have is talk and texts that represent reality partially, selectively, and
imperfectly’ (Riessman, 1993, p.15).
After recording, each interview was transcribed into written format for further
analysis. The transcription of spoken language into written discourse may not fully
capture the nuances, gestures or non-verbal forms of communication that are an
integral part of a ‘real’ conversation (Clandinin & Connelly, 2000; Mishler, 1986;
Riessman, 1993, 2002). This reality is captured eloquently by Miller and Crabtree
(2004, p.200) who note,
‘the interview is an oral, visual, and kinaesthetic dance between two living
bodies with multiple levels of communication. The transcription of this
reality will never capture this reality’.
Thus while narration is an interpretive act, transcription too is a process in which we
may not assume the transparency of language with Bell (1988) further claiming that
‘transcribing discourse, like photographing reality, is an interpretative act’ (cited
by Riessman 1993, p.40). In transcribing a narrative, many features of the original
reality may become excluded such as non verbal communications, gestures and
looks. Attention to features of speech such as pitch, pace, volume, overlaps and
animation of the voice may also become lost in transcription. However while
‘transcripts are not fully equivalent to the talk’ (Riessman, 1993, p.13), they are
nonetheless valuable and a foundational part of narrative analysis.
At the end of each interview field notes were made of the impressions of each
interview, including feelings about the rapport developed. If particularly strong
reactions to specific topics were given, these were noted in addition to immediate
impressions of, or inconsistencies in, the accounts offered. Although Mishler (1991,
p.47) makes the bleak prediction that ‘transcribing tape recorded interviews is
complex, tedious, and time consuming work that demands careful listening and re-
listening’, I opted to personally transcribe the interviews, and this became a critical
88
initial phase of the analysis. This process of transcribing became a valuable early
familiarisation with each person’s story as the process of interpretation and finding
links and meanings were beginning to form during each listening, re-listening and
typing of their words. While transcribing these interviews was an exercise in
becoming immersed within them and beginning the formations of analysis, it also
preserved methodological integrity by removing the additional interpretive layer of
yet another person deciding what (perhaps critical) words might be filtered out or
misinterpreted22F
23. The transcription phase therefore formed a vital element in
formulating the interpretations, links and connections within each story, and
collectively across all stories.
Initial transcription began with the words and other striking features such as
laughing, long pauses, hesitation, tone of voice and so on. Mishler (1991) proposes
that multiple listenings are required to ensure as accurate as possible a representation
of the dialogue, and this advise was followed. After the initial transcription, two
consecutive ‘re-listenings’ of the recording were undertaken and the inevitable
corrections made. However, in the analysis phase that followed, Mishler’s
cautionary advice to be wary of ‘taking the transcript too seriously as the reality’
(ibid, p.48) resonated strongly. Through the subsequent analysis the original
recordings were continually referred to in order to confirm the aptness of any
interpretations made. Finally however, while these transcripts clearly represent
participants’ own words, as Bridle (2004, p.137) notes, it cannot be presumed that
these words are necessarily spoken on the participants’ own terms. This insight is
further echoed by Mauthner and Doucet (1998) who note that the ability to hear
individual stories ‘in and on their own terms’ is to some extent impossible as each
story is significantly already situated in the wider social and cultural contexts which
may delimit and define both the story and its narrator.
23 Clandinin & Connelly, 2000; Mishler, 1986; and Riessman, 1993, all note the experience of having texts mis-transcribed, and emphasise the importance of several re-listenings to ensure the written texts matches the spoken conversation.
89
Narrative Interpretation
‘the best hope of hermeneutic analysis is to provide an intuitively convincing
account of the text as a whole in light of the constituent parts that make it up’
(Bruner 1991, p.7).
Numerous definitions of the term ‘narrative inquiry’ exist, leading Riessman (1993,
p.17) to conclude that ‘there is no binding theory of narrative but instead great
conceptual diversity’. ‘Narrative’ may therefore be thought of as an umbrella term
which incorporates a range of activities. The descriptions of narrative offered vary
widely, and are often oriented towards the specific professional discipline of the
author proposing them (Riessman, 2004). ‘Narratives’ may range from the broad
‘illness narratives’23F
24 of medical sociology through to the highly regimented
structural analysis such as that offered by Labov (1972, cited by Riessman 1993,
p.18). While broad interpretations of narrative such as the illness narratives are
compelling and aid our phenomenological understandings, they provide little
structure or form for the systematic analysis required from a research methodology
(Riessman, 1993, p.17).
Narrative scholars generally agree that narratives are stories about specific past
events that have a clear beginning, middle and end. Some argue for chronological
sequencing, while others reject this rigidity noting that not all narratives are ‘stories’
in the linguistic sense (Riessman, 1993, p.18). Labov’s (1972) structural approach
focuses on short narrative segments and seeks the presence of six defining properties
of a narrative being (1) an abstract, (2) an orientation in time and space, (3) a
complicating action, (4) an evaluation of the significance and meaning of the action,
(5) a resolution and finally (6) a coda that returns the listener to the present. Others,
such as Labov (1972), adopt a more technical linguistic approach looking for the
shape and form of the language, such as pitch, fall, repetition, emphasis and syntax
in exploring the features of narrative for analysis. In some of her work, Riessman
(1993) has adopted an analysis style that creates stanzas of form, looking for
emerging rhythms and patterns, while Clandinin and Connelly (2000) define 24 See for example Cassell, 1991; A. Frank, 1995; Kleinman, 1988; Sparkes & Smith, 2005; Toombs, 2001 .
90
narrative as both a phenomenon under study and a means or method of study. Some
researchers such as Bell (1988 cited by Riessman, 1993) talk of narratives in terms
of reducing the whole story to a ‘core narrative’ (in a process that Riessman, (1993,
p.43) describes as ‘radical surgery’), that can be extracted and compared with other
reduced core narratives, while Bruner (1991) further defines narrative in terms of ten
key distinguishing features24F
25. While features of plot, scene, temporality, breach and
agency flow through these different approaches, not all narratives fall so obligingly
into these categories.
In thinking about narrative interpretation, Riessman (2004) makes a further (loose)
categorisation of narratives into four types of analysis these being 1.Thematic (what
is said); 2. Structural (how it is said); 3.Interpretive (dialogical co-construction) and
4. Performative (analysis of social action). As Riessman (ibid) notes, the boundaries
between these forms of analysis is hazy, and various approaches may be combined,
hence, narrative methodologies are not recipes to be followed to the letter, but may
themselves evolve. This view is echoed by Andrea Doucet (2006, p.278) who writes,
‘while methods begin with particular ontological and epistemological conceptions,
these can be transformed as they move through the hands and minds of varied
researchers’.
Others propose that every narrative is ‘plurivocal’ (Gilligan, Spencer, Weinberg, &
Bertsch, 2003; Riessman, 1993), or open to several readings/listenings or
constructions and interpretations, even for the same reader. From a
phenomenological ethical stance such as that adopted in Chapter Two, the notion
that narrative texts may contain several threads or layers of meaning was particularly
resonant. As the phenomenological tradition accepts a multilayered, interpretive and
relationally embedded account of human ontology, a narrative mode of inquiry that
specifically recognises multiple co-occurring narrative threads presents a
philosophically and methodologically coherent means of inquiry. Additionally, from
a linguistic sense, a word may evoke different responses from the listener/reader on
25 Bruner’s ten features of narrative are 1. Events that occur over time, 2. Particularity, 3. Intentional and agentic, 4. Hermeneutic composability, 5. Canonicity and breach, 6. Referentiality, 7. Genericness, 8. Normative ness, 9. Context sensitivity and negotiability, and 10. Narrative accrual.
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different readings. In that sense, the reader is a collaborator in how the text is
interpreted (Riessman, 1993, p.14), thus the listener (or reader), the researcher and
the narrator all exhibit some agency in what story is told. Acknowledging the
plurality of stories being told within ‘a’ story, and the dialogically constructed
nature of our understandings thus resonates strongly with the phenomenological and
hermeneutical orientation of this work.
One such mode of narrative analysis which intentionally embraces the multifaceted,
subjective and relational nature of narrative is the Listening Guide (Gilligan et al.,
2003). This guide has been in development and use by Carol Gilligan and numerous
colleagues (Brown & Gilligan, 1991; Brown, Tappan, Gilligan, Miller, & Argyris,
1989; Gilligan, 1982, 1996; McLean-Taylor, Gilligan, & Sullivan, 1995),
undergoing some refinements and transformations since its original form was
published in the late 1980’s. Drawing on Gilligan’s (1982) work on identity and
moral development, viewed through the professional lens of psychology, the method
acknowledges the multilayered nature of the human psyche as expressed through a
multiplicity of voices. As a voice-centred, relational method of narrative analysis
the ‘Listening Guide’ ‘draws on voice, resonance, and relationships as ports of
entry in to the human psyche’ (Gilligan et al., 2003, p.157). Gilligan et al (ibid)
further explain,
‘because every person has a voice or a way of speaking or communication
that renders the silent invisible inner world audible or visible to another, the
method is universal in application….Thus each person’s voice is distinct - a
footprint of the psyche, bearing the marks of the body, of that person’s
history, of culture in the form of language, and the myriad ways in which
human society and history shape the voice and thus leave their imprints on
the human soul’.
Thus the ‘Listening Guide’ provides a particularly appropriate framework in this
project, because it holds an embedded, embodied, relational and subjective view of
human ontology at its core. Furthermore, it places emphasis on individual
participants who are best equipped to articulate their own personal accounts. Many
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social researchers have embraced and adapted this method to their particular
research goals (Balan, 2005; Doucet, 2006; Kersten, 2007; Lewthwaite, 1999;
Mauthner, 1998; Mauthner & Doucet, 1998; Raider-Roth, 2005; Spencer, 2002;
Waithe, 2005; Woodcock, 2005). Use of the Listening Guide has similarly
facilitated a multilayered and systematic course of analysis in this research.
The Listening Guide
After transcription, the collected interviews were analysed and interpreted using
Gilligan’s relational ‘Listening Guide’ method (Gilligan et al., 2003). Doucet
(2006, p.65) describes the Listening Guide as an approach to data analysis that
‘combines reflexivity and subjectivity while also focussing on narrative and story
telling’. In keeping with the hermeneutic theoretical orientation towards ethics
embraced throughout this work, the ‘Listening Guide’ provided a framework of
analysis which acknowledged that humans develop in relation to one another, living
embodied lives that are deeply embedded in social contexts. Therefore, the
experiences offered are inextricably linked to and defined by the broader social,
cultural, and historical relationships to others (Balan, 2005; Doucet, 2006;
Mauthner, 1998; Mauthner & Doucet, 1998; Raider-Roth, 2005; Waithe, 2005).
Rather than coding and quantifying the interview text, this method of qualitative
analysis focuses on a series of three sequential ‘listenings’ to each interview as an
intentional and deliberate strategy of analysis (Gilligan et al., 2003). The purpose of
the three, consecutive ‘listenings’ stems from an acknowledgement that
simultaneous and sometimes conflicting stories can co-occur within the same
narrative text, therefore the freedom to interpret multiple times preserves the
complexity and situatedness of each story told (ibid). This analysis differs from
traditional narrative analysis25F
26, and recognises that much of the meaning conveyed
within an in-depth discussion cannot be successfully captured by ‘reducing to codes’
(England, 1994, p.212. cited by Bridle, 2004, p152) as embracing the embedded
context of the narrative is crucial in preserving its intention.
26 Traditional analysis includes rigid coding and computer generation of themes, which often preclude access to the multifaceted and plurivocal feature of narrative.
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Within the Listening Guide, each listening focused on a different aspect of the
narrative.
• The first listening focused on ‘plot’ and the listener response to the
interview.
• The second focused on the “voice of ‘I’”, and sought to understand how the
interviewee regarded themselves by examining statements made in the first
person.
• The third listening searched for the counterpoint of the story put forward,
which Gilligan calls the ‘contrapuntal voice’.
• The fourth and final stage of this guide was to compose a summary in which
all three ‘listenings’ were pulled together and summarised in relation to what
they reveal about responses to the research questions (Gilligan et al., 2003).
Each of these listenings will now be considered in more detail.
Step 1: Listening for ‘Plot’
Ginsberg (cited by Riessman, 1993, p30) determines the plot to be the point at which
a narrative turns away from that which is expected, while Bruner (1991) explains
plot in terms of ‘trouble’ or ‘canonicity’ and ‘breach’ with respect to the dominant
cultural story. However, ‘plot’ is a rich and versatile word that has many nuances
depending on the context of its use. As a noun, it may be interpreted as a thing of
intrigue, with conspiratorial undertones. It may also be defined as the area or section
on which our attention is focussed. Gilligan et al. (2003) regard plot as what is
happening and attend to the multiple contexts in which the story is embedded.
Gilligan et al (ibid) further describe ‘the plot’ as defining where we are on the
landscape, what features are on the landscape, and what is happening in relation to
the larger social and cultural context within which stories are situated. Thus
questions relating to plot include: What themes are emerging? Are the themes
related? Are there contradictions in the themes? Are certain perspectives silenced?
And, what is the story’s subtext?
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As a verb, the word ‘plot’ can allude to how one charts, navigates or negotiates a
course across a landscape or around various obstacles. Applying the analogy of a
landscape further, it can be helpful to consider ‘plot’ (v.) as how the various
stakeholders navigated their way around the various themes (from the topic list) or
features on the landscape. As the plot or direction of each person’s journey is
influenced by and filtered through the multiple interpretive lenses of culture,
tradition, institution and community, the course of the journey, which is shaped by
these pre-existing interpretive frameworks, may provide further links into the
broader social dynamics that define the cultural and medical master narratives of
prenatal screening. Thus ‘plot’ can be simultaneously thought of as a verb, how we
travel, and as a noun, focussing attention on the terrain and themes we cross.
In the analysis phase, a key was developed from the scatterlist of topics to classify
them into four broad categories, each directly related to the research questions (see
Appendix IV). The four narrative categories related to informed consent, agency or
constrained agency, comments made about the effectiveness or adequacy of the
educational opportunities, or role of education in the process, and finally all thoughts
or ideas offered about how the process may be transformed in the future. An
additional column was added to identify the contrapuntal voices 26F
27 present.
Condensing the texts in this way enabled me to look for repeat metaphors and
images, and draw comparisons between all accounts.
Gilligan et al (2003) advocate a second phase of the first listening, which compels
the listener/researcher to reflect upon, acknowledge and appreciate the impact the
story has upon them (Gilligan et al., 2003). Because the researcher is never a
completely neutral observer, being always already constituted themselves, it is
through this reflective step that the researcher can orient themselves both socially,
culturally and intellectually in relation to the participant (Mauthner & Doucet,
1998). This step encourages the researcher to acknowledge their own emotional
response to the participant’s story, to consciously consider how the theoretical
interpretations of the respondent’s narrative are formed. This step invites a
systematic way of alerting the researcher to ‘who’ is speaking, in what context and
27 See Step 3 of the Listening Guide.
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within which societal or cultural framework (Gilligan et al., 2003). It was in this
‘listening’ that the necessary links to situate the individual narratives within the
wider cultural framework could be made. In this sense, the analysis was, as Laverty
(2006, p. 14) describes it, ‘a cyclical process’, that involved making meaning from
individual stories by ‘revisiting, re-interpreting and finding deeper meaning in the
texts’.
Step 2 – ‘I Poems’
The purpose of the ‘I’ poem as described by Gilligan and Spencer et al. (2003) is to
intentionally focus ‘the listener’ on the first person voice of ‘the teller’, and
actively attend to what this person, the “I” in the story, has to say about themselves
before presuming to be equipped to talk about them (ibid, p.162). This step further
invites the listener to acknowledge a relational dialogical stance to the interviewee
rather than viewing the research as a distanced and objectified monologue.
While Gilligan et al (2003) advocate the production of ‘I poems’ by extracting all
instances of the ‘I’ in the transcript with its accompanying verb, following the brief
and decontextualised example provided in the above mentioned paper created
disjointed ‘poems’ that were often contradictory to the clear intention of the whole
text. For that reason, a fuller account of the ‘I poem’ was formed which included
contextual clarification anchoring the ‘I’ statements to the context in which they
were made. Similar approaches to extending the ‘I poem’ have been taken by other
users of the Listening Guide (Balan, 2005; Doucet, 2006; Mauthner & Doucet,
1998) and in this instance, the extended approach provided a more meaningful
account of the ‘I’ story, which more truly represented the intention of focussing the
researcher on each individual’s situated account of themselves. The extended ‘I’
poem became a crucial and powerful part of the analysis, succinctly illuminating the
often conflicting and contradictory thought processes that were occurring in the
participants being interviewed. As a condensed story within a story, it was often
through reading the ‘I poem’ that the plurivocal and multilayered nature of each
narrative became highlighted, uncovering the various internal tensions and
contrapuntal voices contained within.
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Another striking observation flowing from the ‘I poem’ was the realisation that the
‘I poem’ paradoxically dispelled the myth of the punctual autonomous, individual ‘I’
that flows through some philosophical understandings of ontology in medical
practice and bioethics as discussed in Chapter Two. A common feature of all the
interviewees’ ‘I poems’ was that the ‘I’ statements were inevitably accompanied by
relational qualifiers, linking the ‘I’ to their embedded world of relationships with
significant others27F
28, and explaining their actions in terms of preserving or
negotiating these relationships. Therefore the ‘I poems’ unexpectedly supported a
key orientation of this research that argues against the rationalist presumptions of
detached, autonomous, and atomistic beings and acknowledges that individual
decisions are not remote, rationally constructed autonomous choices, but rather
deeply embedded, embodied and deeply relationally constrained.
To illustrate the power and relevance of the ‘I poem’, the following section of
narrative is taken from an interview with Terri, who at 38 found herself
unexpectedly pregnant with her fourth child. Terri’s cousin had recently given birth
to a child with Noonan’s disease, a relatively uncommon genetic disorder occurring
in around 1 in 1000 to 1 in 2500 live births (Tartaglia et al., 2003). In the back of
her mind, Terri held concerns for her baby that focussed on the potential presence of
Noonan’s that had recently occurred in her extended family, and she expressed these
specific concerns to her doctor. She was advised to have a nuchal screen with
accompanying blood tests and on the basis of this result was further advised to
undergo amniocentesis. The ‘risk’28F
29 of having a child with Down syndrome was
presented to Terri as 1:500, considerably lower than the published risk of 1:177
based on age alone (DSAQ), so Terri was clearly at lower risk than her age alone
would indicate. She declined the offer of amniocentesis due to concerns about
miscarriage and was asked to sign a consent form outlining her rejection of further
testing. During the following weeks, Terri undertook her own investigations during
which she discovered that none of the testing she had been offered would have
answered her specific concerns about her child having Noonan’s Syndrome. All
28 For example, references to ‘they’, ‘them’, ‘he’ , ‘she’, and ‘it’ reflect a relational stance to the others who significantly shape each individual’s story. 29 The encumbered language of ‘risk’ will be more thoroughly explored in Chapter Seven.
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testing carried out was centred primarily on detecting a child with Down syndrome,
a possibility Terri had not previously considered and had not directly inquired about.
She describes her frame of mind for the remainder of her pregnancy as ‘a tender
state’, ‘almost depressed’ and ‘vulnerable’ right up until the birth of her son. She
concluded that she had been through this experience ‘for nothing’, both because the
testing did not address her specific concerns and because her son was born ‘beautiful
and perfect in every way’.
Terri’s narrative account of her experience began like this:
T: I went public to XXX public hospital and I had Dr XXX there, and I guess
because I was a bit older… … there were questions asked and it was almost
assumed that there were certain things I should do. I was asked quite a few
times whether I wanted these tests done, I was also a little bit concerned
myself because my cousin had recently, in similar circumstances with a
surprise pregnancy, had a child who was severely handicapped, to the degree
that he spend the first few years of his life almost constantly in hospital or
some sort of care. I was a little bit concerned about that, because that’s the
first child in our family to ever be born with that sort of thing. I guess being
older, I was 38… … because I had gone over the 35 ‘hill’, over the hill
……[laughs], …..A lot of the doctors & nurses who saw me were saying
‘what sort of tests would you like … … we need to be careful.’
E: Was it presented as an option or was it more presented as something you
were expected to do?
T: I felt it was a case of I ‘should’ have the tests … I ended up having the
blood, the triple test, I was concerned about what my cousin’s child had – I
believe it was Noonan’s Syndrome? I talked to the doctors about that and
they said I should have the blood test, and another ………..the nuchal fold
test on ultrasound. With the blood test, it came up that I had a 1:500 chance
of having a baby with Down syndrome, but the ultrasound showed no signs
at all.
E: How was that risk explained to you?
T: It was presented as high risk; definitely, they said ‘it’s a high risk’… …
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E: Who explained the result to you……what did it mean to you?
T: I had 3 separate doctors ring me from XXX hospital, I believe they were
registrars, I had never spoken to any of them before, and they all said that to
me. There was one lady in particular who was quite adamant that I needed to
come in and have an amnio – it was very much put to me that I needed
[emphasis] to do that, and I needed to do it as soon as possible [emphasis]
because if there was to be a decision made, it had to be made quickly29F
30.
The ‘I’ poem that emerged from this section of the text follows:-
I went public
I had Dr XXX
I guess because
I was a bit older
[Things] I should do
I was asked
[Whether] I wanted these tests done,
I was also a little bit concerned
I was a little bit concerned about that,
I guess being older,
I was 38
I had gone over the 35 ‘hill’, over the hill [laughs]
I felt it was a case of I ‘should’
I ended up having the blood, the triple test,
I was concerned about what my cousin’s child had
I believe it was Noonan’s Syndrome
I talked to the doctors about that
[They said] I should have the blood test, and the nuchal fold
I had a 1:500 chance of having a baby with Down syndrome
I had 3 separate doctors ring me from XXX hospital, 30 Note the use of impersonal third person language here that depersonalises and detaches ‘the decision’ from any person who may make ‘it’.
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I believe they were registrars,
I had never spoken to any of them before
[They were quite adamant]
I needed to come in and have an amnio
[They said]
I needed [emphasis] to do that
I needed to do it as soon as possible
This ‘I’ poem reveals several key points of interest that capture the complexity of
the competing considerations that influence decision making of whether to embark
upon a prenatal screening regime. The first and most obvious observation that Terri
makes about herself is that she, and others, interpret her age as a significant issue.
This automatic assignation of ‘high risk’ for women over 35, as Lippman (1991)
notes, ensures compliance with screening, which is presented as a risk lowering
strategy. Terri’s existing level of anxiety about her age, coupled with her cousin’s
recent experience of having a child with a somewhat rare genetic disorder and strong
recommendations from medical staff, all contributed to her perceived pressure to
embrace testing. Although this is a relatively short extract, it clearly speaks to a
broad range of issues across the research questions posed in this thesis. For example,
the routine nature of screening is identified, as is her physicians’ expectation of what
the responsible course of action should be30F
31. In addition, trust in medical staff and
the sometimes pressured and overtly directive nature of advice all feature in this
short extract, all themes around which the plot weaves. Terri repeatedly notes that
she felt she should engage in the screening on offer, frequently giving reference to
the strong directions of what ‘they’, her doctors, said should be happening, despite
her own uncertain feelings. Terri’s account reveals her embeddedness in her culture
which entrenches that she is ‘over the hill’ at 38, her embeddedness in her family (in
which her cousin has recently had a child with a genetic disorder), a cultural norm
that entrenches a normative expectation of what responsible mothers ‘should’ do to
prevent disability in the community and a cultural norm in which the medicalisation
of pregnancy is automatic and largely unquestioned.
31 Chapter Seven explores the social expectations of responsible pregnant behaviour.
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The remainder of the interview revealed that Terri’s presumption that her doctors
had listened to her specific concerns, although it later transpired that in her opinion
they hadn’t, created distrust and distress, resulting in what Bruner would call
‘breach’ (Bruner, 1991). She had begun the process seeking re-assurance but
instead found ongoing confusion as a result of the unclear results and malleable
interpretations of what constitutes a ‘high’ risk.
The remainder of Terri’s ‘I’ poem is worthy of inclusion because it provides a clear
insight into the interview and highlights the crux of her thoughts on the whole
experience, touching on other key features related to the research question posed
such as informed consent, the education process she experienced, the constrained
nature of agency and her competing interpretations of her situation.
I was over 35
I was very concerned (that three doctors had called within 24 hours)
I said I didn’t want to do that (amnio)
I knew there was a 1:200 chance
I could have a miscarriage
I decided 1:500 was better odds
I just said no
I think they made me sign a consent form
I had said ‘no’
I did my own research
I found that out
I just got on the internet
I thought I’ve done this for nothing
I was quite anxious
I had known children with Down syndrome
I was concerned because of the severity of my cousins’ child
(Now) I wasn’t as concerned about Noonan’s
I was more concerned about Downs
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(After) I did have him
I was looking at him through the crib
I was looking
I just thought - has no-one else noticed that?
I couldn’t see he wasn’t Downs
I had never considered it in the past
I was so disappointed
I would never have thought of that
I definitely wasn’t prepared for other problems being flagged
I really wasn’t interested in finding that out
I had the attitude if God had given me this child then…………
(maybe) I was being selective
I could see how hard it was from her [cousin] to cope
I wasn’t planning on being pregnant
I was having trouble coming to grips
I was in a bit of a tender state
I did ask questions
(maybe) I just didn’t ask the right questions
I certainly mustn’t have
I was concerned
I would say there was a lapse in communication
I put trust in the midwives
I had a very difficult delivery
I do think communication issues are a bit of a problem here
I think it comes down to speed of service
I think maybe it was worse than I thought
I felt there had been a communication breakdown
I thought I did at the time [have enough understanding]
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I thought I was informed
I obviously wasn’t as informed as I should have been
I certainly wasn’t informed
I would have to make choices
I’m sure there are lots of women in the same boat
I think each parent should get a piece of paper, so they can read and
re-read
I guess I was a bit muddled
I would really have filtered it
I wouldn’t have told him ( her partner) everything
It was a worrying time for me……
I couldn’t put it out of my mind
I got to the end
I just wanted it to be over
I think I was almost depressed
I was wondering if I had a child with Down syndrome
I suppose it all comes back to being informed
I was pretty much up on the language
I just felt conscious of trying to ask the right questions
The ‘I poem’ also strongly illuminated the presence of ‘others’ shaping the story,
‘they’ to whom she stands in relation to, as well as revealing the distancing and
detached language of ‘a decision’, and ‘it would have to be made’. These
observations also uncovered some of the underlying power dynamics that shape
behaviour and provided further connections to the broader cultural dynamics at play.
As Gilligan et al (2003, p.164) suggest, the ‘I poem’ clarifies the ‘hearing’ of a
range of potential variations in the first person voice, including ‘a range of themes,
harmonies, dissonances and shifts’, which prepared the groundwork for the next
phase of analysis, which was listening for contrapuntal voices.
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Step 3- Listening for Contrapuntal Voices
Gilligan et al (2003) contend that each person expresses their experience through a
multiplicity of voices, hence, listening for ‘contrapuntal’ voices or counterpoints in
the story forms an important part of the Listening Guide. Contrapuntal voices are
likened by Gilligan et al (2003) as akin to a musical chord in which several notes
may be played simultaneously creating harmonic or dissonant sounds. Thus, these
concurrent threads or ‘melodic lines’ that run through each narrative may be
complementary or contradictory, and are not necessarily regarded as in opposition to
each other (ibid, p.165). In drawing attention to the counterpoints of the main story
different ways of ‘hearing and developing an understanding of several different
layers of a person’s expressed experience as it bears on the questions posed’ (ibid.
p.164) are offered. Balan (2005, p.6) makes the further claim that identifying and
incorporating the contrapuntal voices contained within participants’ stories provides
an additional layer of richness to the overall interpretation and findings.
The initial two listenings of the Listening Guide focused attention on becoming
attuned to the multiple distinct voices contained within the text (Balan, 2005;
Gilligan et al., 2003; McLean-Taylor et al., 1995; Raider-Roth, 2005). From these
observations, as Gilligan et al (2003, p.168) suggest, an initial description of the
distinct ‘other’ voices was made and their relevance to the research scope and
analysis was assessed. Each identified contrapuntal voice was then listened for, one
at a time, throughout the whole transcript. Like the observations made by Balan
(2005) and Raider-Roth (2005), the number and nature of the contrapuntal voices
heard in this research differed between participants, and participant groups, varying
from between two and five contrapuntal voices running through each text, but
containing many overlaps and similarities. The following tables summarise the
prevalence and type of contrapuntal voices, the descriptors of which are largely self
explanatory, present in the participants’ narratives.
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Table 1. Contrapuntal Voices – Mothers Table2. Contrapuntal Voices - Practitioners.
Within the mothers’ cohort three contrapuntal voices dominated. They were;
• The Voice of Care
• The Voice of Capitulation/Acquiescence
• The Awakened Voice
While within the practitioners’ cohort, two voices clearly dominated the texts being:
• The Voice of Professional Objectivity/Clarity, and
• The Voice of Care
The most markedly prevalent voices from each group will now be briefly discussed.
• The Voice of Care (Mothers)
The voice of care was characterised in mothers in each recounting of how they had
acted to preserve their child’s well being, illustrated by the actions taken to protect
Mothers (7 )
Present
Care
IIIIIII
Capitulation
IIIII
‘Awakened’ voice (Balan, 2005)
IIIII
Voice of Clarity
IIII
Voice of Resistance
IIII
Voice of Reproach
III
Voice of Contradiction
II
Self Doubt
II
Voice of Self interest/ control
I
Practitioners (11)
Present
Professional objectivity/clarity
IIIIIII
Care
IIIIIII
Self doubt
IIII
Dismay/despair/disappointment
IIII
Self preservation
III
Detachment/disconnection
III
Professional Defensiveness
II
Condescension
I
Control
I
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the welfare of their unborn child. This voice was identified in the narratives of all
mothers. Some examples included,
This child is my child, whether there is something wrong with it or not….My goals as a mother are much more personal, it’s about the love for the child, the desire to have the child and its well being naturally…….but, that the child is mine and it’s about looking to the future with joy and excitement that a new child brings. Anne; You could lose a healthy baby, when there was only a 1:300 chance of the baby having Downs…….it was too big a risk to lose a possibly healthy baby, Danielle; I came home, sat on the couch for 2 days and didn’t move’ (to minimise the risk of miscarriage after amniocentesis).Leanne; I just think that everyone has a value, regardless of what that may be; who can say someone is a less valuable person in our community than a child who doesn’t have special needs? Elizabeth.
• The Voice of Capitulation (Mothers)
An example of the Voice of Capitulation was present in five of the mothers’ stories,
defined as the voice of surrender or submission. This contrapuntal voice spoke
clearly to the constrained nature of presumed agency and illuminated the multiple
sources that undermined or disempowered women in their interactions with their
health practitioners and their significant others. Markers of the contrapuntal voice of
capitulation were use of words like should, or have to, or language of excuse that
revealed an unease, unrest or disquiet. Some examples of this voice follow taken
from various transcripts.
I guess because I was a bit older… … it was almost assumed that there were certain things I should do. I guess being older, I was 38, because I had gone over the 35 ‘hill’, over the hill [laughs], a lot of the doctors and nurses who saw me were saying ‘what sort of tests would you like - we need to be careful’. Terri; I said……Do I really have to?………………..because I’d seen the same obstetrician for all my (three) pregnancies he said ‘Well, we need to because of what happened last time….just to rule anything out’. Mary; It was assumed I take it that they thought I wanted the ultrasound done but I wasn’t aware of the medical reasons why. Penny; I honestly thought it was just a routine exercise that you had to do……….the hospital said you had to do certain tests at certain times…Danielle.
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• The Awakened Voice (Mothers)
Nicole Balan (2005, p.11) describes the ‘awakened voice’ in the context of her
research as the voice which emerges when the person acknowledges and affirms
their own needs. This descriptor similarly resonated with the ‘awakened’ voice
identified in the narratives of some mothers. The awakened voice is therefore a
voice of empowerment, marking a change in orientation from the perception of
subjugation to the wishes and expectations of others, towards claiming an intentional
direction towards ones own needs. Some examples follow,
I just got on the internet; it took 15 minutes, it’s amazing what you can find there. I thought I've done this for nothing. I said no …I just said no. Terri; It was like I had to say ‘yes I have decided not to take that option’………….I never regretted not having the amnio. Danielle; I just felt like screaming…………at everyone…………….just for the whole….I was really glad that everything was OK, but I didn’t like the way it was done. Mary; We just tended to dig our heels in …..rather than be pressured…..it wasn’t that we had more questions, we just said no…..no discussion…no matter what you say….we didn’t need more education or information at that stage, we just said no…… we’re not doing it…Penny.
For health practitioners the two dominant contrapuntal voices were those of
professional objectivity and clarity and again, the voice of care.
• The Voice of Professional Objectivity/Clarity
This voice was defined as the detached, methodical and objective professional voice.
While this voice may represent an attempt by the practitioner to distance themselves
from the complex moral terrain of cultures, prejudices, histories, vulnerabilities and
emotions inherent within reproductive medicine, a successful therapeutic partnership
requires some degree of objectivity. Some examples follow,
I would, in broad terms, discuss the validity matrices that are used, the combination of both imaging and serology being used to form a matrix. I would discuss the fact that these are predictive in nature but not conclusive. General Practitioner 1; Well, the nuchal translucency has about a 75% pick up for Down syndrome, it can pick up other chromosomal abnormalities that are a bit more common such as trisomy 13 and 18, but it was really geared towards Down syndrome. In fact I think
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it’s about 90% pick up for those, but that’s not many people know about that, so that’s not the advertised part of it, or well known. If you combine the blood test with the ultrasound (NT), that gives around a 90% pick up for Down syndrome, and similarly 95% for trisomy 13 and 18. Obstetrician.
• The Voice of Care
The voice of care for patients strongly resonated through many of the practitioners’
narratives, expressing care that patients be nurtured and supported through this
unfamiliar and potentially alienating process, and care that any potential harms that
may arise in the process of any medical interventions be minimised. The committed
voice of care is illustrated below,
Its also part of my job to be an advocate for them, and not see them make decisions that cause conflict later on ………..when they may say ‘I didn’t realise that when I made that decision, it would lead to that, and that and so on…………and I wish back then that I hadn’t started down that path’ General Practitioner 2; You have to keep trying until you find something that works for that individual, and it may be something different for the husband than for the wife, but I see that as my role in helping them interpret what is essentially a foreign language, that’s how I see it………and it is… really. Genetic Counsellor 2; Establishing that rapport is probably an important aspect of developing that trust ……….I mean …..It’s probably a very important aspect, I guess, why should they believe you? Clinical Geneticist; When I get the shared care booklet back from (X) hospital, I add my cell phone number and you’d be amazed the number of girls these days who give you a call at 2am in the morning because they are lying there and the baby’s kicking them to death but they still don’t understand what the bloody test meant…….or they e-mail you because they’ve read something on the web. General Practitioner 1;
You don’t tell women those things… because you don’t want them to worry. Obstetrician. While many contrapuntal voices were present in the narratives of participants, the
five dominant voices perhaps provide some insight into the source of ethical tension
present in the prenatal screening debate. Interestingly both groups were significantly
motivated by care, whether care for a potential child or care for a patient. However,
even with the supposedly common goal of care at the core, many tensions are
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present throughout the narratives arising from the clearly differing expectations, or
culturally endorsed expectations of how such care should be actualised.
Additionally, the strong presence of the ‘awakened voice’, which often replaced the
voice of capitulation suggests that for the mothers in whom this voice was present,
after the misunderstandings of their initial compliance or capitulation were exposed,
they did for the most part regain a sense of personal control and agency in pursing a
pathway that better reflected their own moral frameworks. However, for some this
came at the potentially avoidable cost of great emotional distress, anxiety and
alienation as will be discussed in Chapter Eight.
Contrapuntal voices – A window on individual moral frameworks?
While the presence of contrapuntal voices is acknowledged by many researchers
adopting this method of analysis (Balan, 2005; Gilligan et al., 2003; McLean-Taylor
et al., 1995; Raider-Roth, 2005), the underlying meaning or ethical import of the
contrapuntal voice has not yet been made explicit. Yet, contrapuntal voices are
morally significant from a phenomenological perspective in terms of what they
reveal about multiple layers of embeddedness and subjectivity, about the competing
strong evaluations, and the pluralities of goods that form and inform individual
moral horizons (Taylor, 1989). While consideration of what constitutes a ‘good’ or
‘harm’ may be a matter of disagreement, consideration of the contrapuntal voices
illuminate this subjective characterisation held by the particular individual.
Contrapuntal voices suggest the presence of a range of strong evaluations (ibid),
highlighting that individuals (who are embedded within communal moral
frameworks) do not embrace one singular ‘hypergood’ per se, but rather that
individual and community moral horizons are forged through the unique fusion and
interweaving of multiple goods. Contrapuntal voices therefore open a window on the
inner self dialogue, revealing the tensions between these strong evaluations, often
negotiating a course not between good and bad or right and wrong, but the more
ethically challenging pathway between competing goods (ibid). Contrapuntal voices
reveal something of how we position ourselves in relation to the goods we hold in
esteem, uncovering the deeply subjective account of our embeddedness. The
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interconnectedness of the voice, the phenomenological account of ontology which
positions the self as embedded, interpretive and relational, and ethics are thus
revealed in these co-occurring contrapuntal voices. For some however, rather than
revealing a fusion of horizons as Taylor (ibid) suggests, these often competing
strands that run through the contrapuntal voices may represent the conflicting
embeddedness of a confusion of horizons (Isaacs, 2007, p.18).
Thus actively attending to the muddy complexity of the plurivocal, contrapuntal
voices draws specific attention to the ethical aspects of the broader social, political,
cultural, and technological contexts, exposing links to the wider narratives that
shape the ethical terrain of prenatal screening. Contrapuntal voices therefore reveal
that there can be no singular transcendental ethic or hypergood per se (such as the
elevation of rationality), rather, the ethical is characterised by a plurality of ‘goods’
located within the complex interweaving and overlapping of individually constituted
(and frequently professionally derived) moral frameworks. The need to open shared
moral spaces institutionally, to create a space of shared interlocution, is therefore an
ethical imperative as it is within these spaces that the pluralities of understandings of
what is ethically ‘good’ may be built and the best moral outcomes maybe negotiated
as part of an ongoing, dynamic and evolving moral conversation.
Step 4 - Summary
The fourth step in the listening guide calls for the listener/researcher to summarise
and interpret the stories in a way that ‘pulls together and synthesizes what has been
learned through the entire process’ (ibid, p.168) in relation to the research
questions. This complete process of analysis was undertaken for all nineteen
participants.
Using Terri’s example once more, in addition to the previous descriptions of her
experience, a final summary was written with regards to the multiple listenings to
the story and layers of analysis and included the further thoughts. The final summary
follows:
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Throughout the interview Terri consistently uses the phrase “I should”,
highlighting a nagging voice of self silencing, suggestive of feelings that she
was coaxed down this pathway against her better instincts, and she now feels
somehow culpable and complicit in the distressing experience she endured,
thus, because of her compliance in it – she feels it is unreasonable to criticise
others.
In terms of the research questions, Terri’s explanations of her decision to
accept the offer of prenatal screening illuminate many key issues relating to
the research questions. The routine nature of screening obscured ‘choice’ for
her, while social expectations of responsible behaviour, given her ‘advanced’
age, permeated her thinking. In terms of informed consent, she
acknowledges that in retrospect she was ill informed about the potential
negative consequences of undergoing a nuchal scan although she felt
informed at the time. She notes paradoxically, that her ‘informed consent’ to
reject her doctor’s advice on amnio was sought in writing, while her
‘informed consent’ to accept the nuchal scan was presumed and her
understandings never canvassed. This illuminates the defensive legal
orientation that informed consent protocols often address in clinical care that
may have been exacerbated by the poor communication between Terri and
her doctors. Educational opportunities prior to testing were limited and when
a problem was suspected, all of the information that Terri came to rely on to
consider her situation came from self directed learning outside the medical
team.
The ‘I poem’ illustrates Terri’s connectedness to her family, and situatedness
in a culture of medical intervention and expected socially responsible
behaviour. Terri’s story also highlights the poor educational opportunities
she encountered and provides suggestions of where she felt this process
could be positively transformed, which link Terri’s entire story to the wider
social structures, entrenched ideologies and dominant discourses under
consideration.
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Limitations and Challenges
Although the link between narrative, ethics, experience and embedded
understanding is widely viewed as philosophically coherent and methodologically
appropriate amongst humanities researchers (Bruner, 1991; Clandinin & Connelly,
2000; Connelly, 2005; Laverty, 2006; Mishler, 1986; Riessman, 1993; Riessman,
2004), numerous criticisms have been levelled at narrative research methodologies
including the following:
• The strongly particular nature of narrative undermines its generalisability.
• The small and statistically ‘invalid’ samples traditionally canvassed for in-
depth narrative research further undermines generalisability.
• As narrative accounts offered are subjective and intersubjective they may be
biased and not reproducible.
• Narratives do not conform to accepted notions of ‘validity’. The subjective
nature of ‘stories’ may give latitude to participants to embellish, lie or
misrepresent ‘the facts’(Hardwig, 1997, p.52).
• The ‘snapshot’ nature of the narrative means outcomes are not enduring.
Each of these concerns emanates from a particular and limited view of what the
desired characteristics of research should be, privileging generalisability, validity,
reproducibility and objectivity. These characteristics emanate from the language and
epistemological orientation towards ‘knowing’, based on the presumed neutrality of
‘facts’, within popularly held views of scientific methodologies which have become
highly esteemed (Chalmers, 1999). However Bruner (2004, p.94) notes,
‘although the language of science, cloaked in the rhetoric of objectivity,
makes every effort to conceal that view except when it is concerned with the
foundations of its field……… they betray the fact that the so-called data of
science are constructed observations that are designed with a point of view
in mind’.
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Rather than aiming for validity, generalisability or reliability in the scientific sense,
a more fitting aim for qualitative research (including narrative) is to seek
explanation, authenticity, adequacy and plausibility (Bruner, 1986, 1991, 2004;
Clandinin & Connelly, 2000; Connelly & Clandinin, 1990; Mishler, 1986;
Polkinghorne, 1988; Riessman, 1993; Riessman, 2004). In discussing the tensions
that exist between these ‘two modes of thought’, Bruner notes, ‘efforts to reduce one
mode to the other or to ignore one at the expense of the other inevitably fails to
capture the rich diversity of thought’ (Bruner, 1986, p.11). However ‘wakefulness’
and proactive consideration of these potential concerns is necessary in order to
consolidate our understandings (Clandinin & Connelly, 2000).
While steps are taken in the methodology to preserve the integrity of the
participants’ voices, by positioning the researcher as ‘listener’ rather then teller, by
having a predetermined ‘topic list’ to focus inquiry, by checking with participants if
they have been misrepresented and by being transparent and reflective about these
multiple influences, in reality there are no failsafe methodological ways to identify
and totally negate all potential biases. All one can do as a researcher is adhere to the
rigours of the methodology adopted, be cognisant of its potential limitations and not
make claims beyond the methods’ capacity to deliver.
Chapter Summary
This chapter explored the central importance of narrative as an ethically and
ontologically appropriate means of accessing the personal experiences of all
participants. As embedded experiential accounts, personal narratives necessarily
open a window on the wider social, cultural, historical and institutional forces that
shape the practice of prenatal screening. Furthermore, the strong resonance between
a narrative mode of inquiry and the phenomenological acknowledgement of the self
as dialogically constructed and narratively understood strongly complements the
philosophical orientation of this work.
The nineteen individual narratives garnered during in-depth interviews were
transcribed and analysed using Gilligan et al’s (2003) Listening Guide. The
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Listening Guide is a voice-centred relational method of narrative analysis which
draws on a series of three sequential ‘listenings’ to each account (Gilligan et al.,
2003). As simultaneous and sometimes conflicting stories can co-occur within the
same narrative text, the freedom to interpret each narrative multiple times preserves
the complexity and situatedness of each story told. Within the Listening Guide, each
listening focuses on a different aspect of the narrative.
• The first listening focused on ‘plot’ and the listener’s reflective response to
the interview.
• The second focused on the ‘I voice’, and sought to understand how the
interviewee regarded themselves by examining statements made in the first
person.
• The third listening searched for the counterpoint of the story put forward,
which Gilligan calls the ‘contrapuntal voice’. Analysis of the contrapuntal
voices suggested that these voices were ethically significant, opening a
window onto the inner dialogue, exposing the plurality of goods and
competing goods, the multiple layers of embeddedness and subjectivity that
shape individual moral horizons.
• The fourth and final stage of this guide was to compose a summary in which
all three ‘listenings’ were pulled together and summarised in relation to what
they revealed about responses to the research questions.
Through this process of analysis the plurivocal nature of narrative was preserved, as
the multiple co-existing themes, voices, perspectives and values frameworks were
uncovered and their relationship the research questions considered.
However, before exploring the voices of the participants more fully, a brief
overview of the screening tests commonly encountered will be given in the
following chapter.
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CHAPTER 4
PRENATAL SCREENING – THE TECHNICAL LENS
Introduction
In order to orient the individual experiences of the participants considered in this
study a brief description of the most prevalent prenatal tests commonly referred to
by the participants follows, accompanied by a short background of the social
contexts in which they have been developed and interpreted. A brief explanation of
the strengths and weaknesses of each will also be given.
The term ‘prenatal screening’ broadly applies to all technologies that attempt to
determine the physical and health status of a foetus before birth. Commonly, it refers
to technologies such as Nuchal Translucency Screening (NT), Ultrasound (U/S),
blood tests including Maternal Serum Alpha Feto Protein (MSAFP) and Pregnancy
Associated Plasma Protein (PAPP- A), Amniocentesis, Chorionic Villus Sampling
(CVS), and Pre-implantation Genetic Diagnosis (PGD). In this short discussion
attention will be focused upon the four most prevalent screens encountered by the
mothers and practitioners in this cohort, i.e. the blood tests MSAFP and PAPP-A,
Ultrasound, Nuchal Translucency, and Amniocentesis.
Blood Tests – Maternal Serum Screening
Commonly referred to as the ‘triple test’ or, more recently, ‘quadruple test’,
maternal serum testing measures concentrations of three or four biochemical and
hormonal levels in maternal serum31F
32 (Borgida, 2002; Wald, Huttly, & Hackshaw,
2003). In conjunction with the increasing statistically determined risk of fetal
anomalies associated with advanced maternal age, abnormal levels of these
32 These markers are alpha-feto-protein, unconjugated oestriol, human chorionic gonadotrophin and inhibin-A.
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biochemical markers have been associated with neural tube defects, placental
problems and some chromosomal or karyotypic irregularities (ibid). Although
abnormal levels may indicate increased risk, they are not conclusive proof of the
conditions mentioned above and further confirmatory testing, such as amniocentesis,
is required to establish a definite diagnosis. A number of false positives of between
4% and 10 % are associated with maternal serum screening (Harrison & Goldie,
2006; Jaques et al., 2007; Press & Browner, 1997; West & Bramwell, 2006). Due to
its applicability to large populations and relatively low cost, maternal serum blood
screening became widespread in the late 1990’s to early 2000’s and was regarded as
a better predictor of risk than maternal age alone (Borgida, 2002). In women under
thirty five, who are by definition in a lower risk category, the use of maternal serum
testing was credited with an increased detection of Down syndrome from 28.7% to
46.3%, (Carothers et al., 1999, p. 186) cementing its clinical relevance. However,
more recently, the increasing frequency of nuchal translucency screening, in
conjunction with the measure of the four blood biochemistry markers mentioned
earlier is more accurate and has a lower false positive rate of around 1% (Spencer &
Cowans, 2007). Thus the combined nuchal translucency and blood testing has
largely superseded use of maternal serum screening alone.
Ultrasound
From its first use in the detection of foetal anomalies in the 1960’s, ultrasound has
become an increasingly routine and widely embraced tool in obstetrics practice
(Oakley, 1996) with around 90% of women in developed countries receiving at least
one ultrasound during pregnancy (Levi, 1998; Whynes, 2002). It is a non-invasive,
inexpensive, visual imaging technique in which high frequency sound waves are
passed through the body. The sound waves are absorbed and reflected by different
tissues to varying degrees, producing a pattern of echoes which can be represented
in picture form (Marieb, 1992 ). Ultrasound use became increasingly widespread in
the 1980s as a means of assessing obstetric risk (i.e. gestational age, placental
position, twin pregnancy). However, it is now increasingly focused on foetal
diagnoses with respect to the revelation of physical or structural anomalies (Getz &
Kirkengen, 2003).
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Generally regarded as a benign procedure because of its non-invasive nature,
ultrasound is commonly offered to all pregnant women irrespective of their risk
status with The Royal Australian and New Zealand College of Obstetricians and
Gynaecologists (RANZCOG) recommending all pregnant women be offered at least
one ultrasound before 20 weeks. RANZCOG further advises that the proactive offer
of more invasive screens for Down syndrome or other fetal aneuploidy32F
33 be reserved
for ‘high risk’ mothers only33F
34. Conversely, the Australasian Society for Ultrasound
in Medicine more cautiously recommend that ‘ultrasound examination in pregnancy
should only be performed for a valid clinical indication’34F
35, suggesting that perhaps
not all women should be offered such a screen. As ultrasound is claimed to carry
little physical risk to the mother or baby it has been widely accepted by women who
articulate their primary motivation in accepting as ‘seeing the baby’ (Erikson, 2001;
Rapp, 2000; Richie, Boynton, & Bradbury, 2004; Whynes, 2002). The motivation to
accept ultrasound to ‘see the baby’ was reinforced by most women in this study,
whose typical comments in articulating why they chose an ultrasound are mirrored
in Anne’s explanation,
I wanted to see the baby, of course, that was a very exciting thing for me. I was interested in whether it was a boy or a girl. With my first child I saw his face, and I was just …. Well….[laughs] I fell in love with him then, he had the sweetest angel face I’d ever seen, and so I was very keen to see my others as well. Anne.
While most of the mothers saw no potential downside in agreeing to have an
ultrasound, some practitioners interpreted this practice through a different, more
cautious lens with one midwife commenting on this phenomenon wryly,
I think they are wooed [by technology]……it’s the first photo of the baby…their photo albums begin now with a scan picture…..quarter of the way through the book is the birth. Midwife 4.
33 The term ‘aneuploidy’ relates to the occurrence of one or more extra or missing chromosomes from the expected 23 pairs, or 46 chromosomes. See http://ghr.nlm.nih.gov/ghr/glossary/aneuploidy. 34 The Royal Australian and New Zealand College of Obstetricians and Gynaecologists. http://www.ranzcog.edu.au/publications/statements/C-obs4.pdf. (Retrieved 18th June,2007). High risk women in this definition include those with ‘advanced maternal age or previous affected pregnancy’. 35 See Australasian Society for Ultrasound in Medicine. http://www.asum.com.au/open/home.htm. Accessed 29th May, 2007.
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In reflecting further on women’s motivations in accepting ultrasound screening,
several practitioners made comments in line with those below:
Women hope that they’re having that scan to find out if it’s a boy or a girl ……and a lot of them find out. [E: Do you think there is a clash of motivation between practitioners and patients?] Well, yes I think so, because from a health professional’s point of view you don’t care whether it’s male or female……I think women go in blissfully ignorant…. or at least not fully informed of what the possible outcomes are. Midwife 3.
And from an Obstetrician,
I do think that the vast majority of people go into a pregnancy thinking everything is normal, that they come for an ultrasound with the view of getting a picture and being told the baby is normal and I don’t really think they honestly appreciate that what you (the practitioner) are really looking for is in fact abnormalities. Obstetrician.
As a tool that is believed to be innocuous, which is readily accessible in the comfort
of an obstetrician’s rooms, an increasing tendency to scan multiple times during a
pregnancy has been noted in the literature (Bellieni et al., 2005; Marinac-Dabic,
2002) a trend highlighted by Mary who explained, With my obstetrician he just did a scan on me every time I went to see him, to make sure that everything was OK, with the baby’s size and so on. [E: How many did you have with Ben?] With Ben………about 12 ………a fair few…………every time I saw the obstetrician I made him give me a scan………in hindsight I guess that was a bit over the top.
This pattern of escalating ultrasound use, typified by Mary’s experience, is
beginning to raise concern amidst some practitioners in light of the growing body of
evidence to suggest that the cumulative doses of radiation to which the developing
foetus is exposed have not been adequately assessed and may indeed be collectively
unhealthy or unsafe35F
36 (Buckley, 2005, pp. 99-102). While Buckley (ibid) cites
extensive research implicating ultrasound as a causal factor in low birth weight,
intrauterine growth retardation, left handedness in male infants and delayed speech
development, these claims remain contested to some degree (Newnham, Doherty,
Kendall, Zubrick, & al, 2004). The relative caution advised in the recent systematic
review conducted by Bricker et al (2000) however suggests that the debate on the
36 Buckley (2005) explores numerous research findings related to the physiological effects of ultrasound on the developing foetus in this short section.
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safety of ultrasound on the developing foetus is far from settled, as suggested in the
following quote,
‘Existing evidence suggests that the use of routine Doppler ultrasound in low
risk or unselected populations does not benefit either mother or baby, and
may be harmful. At present, Doppler ultrasound examination should be
reserved for use in high risk pregnancies’ (Bricker et al, 2000, p.152).
There appears to be growing unease amongst some practitioners about the excessive
use of prenatal screening in general, and ultrasound in particular, with Bellini et al
(2005, p.692) cautioning ‘we should never forget that it is inappropriate to perform
so many scans in a low risk pregnancy’, and Marinac-Dabic (2002, p.S21)
concluding,
‘Recent innovations in the use of Doppler flow studies, higher energy levels,
smaller transducers with a more focused beam and longer times of exposure
have created new areas of potential risk to the developing fetus………… until
long term effects can be evaluated across generations, caution should be
exercised when using this modality during pregnancy’.
However, the growing chorus of advice to exercise restraint in the use of ultrasound
or reject medically unnecessary exposure to ultrasound may not be universally
accepted, as Mary’s experience suggests.
Soft Markers
Until the 1990s only major structural abnormalities, such as anencephaly or
gastroschisis36F
37 were detectable on ultrasound (Getz & Kirkengen, 2003). However,
more recently, as imaging technology has improved, the enhanced visual clarity with
37 Anencephaly is a condition in which the upper part of the brain and its protective skull cap are missing and the lower part of the brain and the base of the skull are not properly formed. This condition is always fatal. (http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm. Accessed 27thMay, 2007). Gastroschisis is an abdominal wall defect in which the anterior abdomen does not close properly allowing the intestines to protrude outside the foetus. (http://fetus.ucsfmedicalcenter.org/gastroschisis/)
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which a foetus can be examined during ultrasound has resulted in the ability to pick
up relatively minor and previously unseen physical ‘anomalies’ or features (Boyd,
Chamberlain & Hicks, 1998). The detection of these more subtle structural changes
have become of increasing interest because of their potential statistical association
with certain chromosomal abnormalities (Getz & Kirkengen, 2003). These subtle
changes, termed ‘soft markers’, are defined as:
‘structural changes detected at ultrasound scan which may be transient and
in themselves have little or no pathological significance, but are thought to
be more commonly found in foetuses with congenital abnormalities,
particularly karyotypic abnormalities’ (Bricker, Garcia, Henderson,
Mugford & Roberts, 2000, p.29).
Examples of soft markers include echogenic heart, seen as white dots within the
heart tissue indicating a structural abnormality, echogenic bowel, dilated renal
pelvis, choroid plexus cysts (CPC’s)37F
38 and shortening of the femur 38F
39 (Getz &
Kirkengen, 2003). In isolation, few of these individual markers raise concern,
however, when several markers are present in a foetus, the statistical likelihood of a
chromosomal anomaly increases and further invasive diagnostic testing is
commonly recommended.
While clinical use of ‘soft markers’ is commonplace, and the diagnostic discourse is
peppered with references to them (Boyd et al., 1998; Getz & Kirkengen, 2003;
Snijders, Noble, Souka & Nicolaides, 1998; Spencer, Spencer, Power, Dawson &
Nicolaides, 2003), their clinical relevance is complicated by their often transient
appearance. In most cases where a soft marker is identified, a healthy, normal child
is born (Boyd et al., 1998; Di Pietro et al., 2006; Getz & Kirkengen, 2003; Whittle,
1997). In a benchmark, six year longitudinal UK study that followed the outcomes
of over 33 000 pregnancies, Pat Boyd (1998) and her colleagues in Oxford reported
that 92% of foetuses identified as potentially abnormal due to the presence of ‘soft
markers’ seen on ultrasound were later confirmed to be normal at birth. Boyd et al’s
38 A recent 2006 study concluded that ‘CPC’s detected by prenatal ultrasound do not pose or reveal a threat to fetal development’ (Di Pietro, Costigan, Cristofalo, & Lu, 2006, p.622). 39 For a fuller explanation of various soft markers, a useful website maintained by National Health Service in the United Kingdom. (http://www.pi.nhs.uk/ultrasound/softmarkers/index_sm.htm. Accessed 18th June, 2007)
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(1998) study further noted a 12-fold increase in false positives when relying on ‘soft
markers’ alone with a corresponding increase in diagnosis of actual malformations
of only 4% (ibid., p. 1579). Two instances of a normal foetus being aborted in
response to a reported soft marker were confirmed, where the parents chose not to
pursue the additional diagnostic testing advised (ibid). Even in this extensive study,
only ‘55% of malformed foetuses and infants were correctly identified prenatally’
(ibid., p. 1578).
With high false positive rates, questionable predictive powers, and the potential to
place healthy foetuses at risk by unnecessary exposure to the risk of miscarriage
while undergoing amniocentesis or unwarranted termination, and the significant
impact on anxiety levels of parents (Kowalcek et al., 2002; Watson et al., 2003), the
reporting of ‘soft markers’, which by definition may be ‘transient and have little or
no pathological significance’ (Bricker, et al, 2000, p.29), remains controversial.
However, as long as practitioners feel it is ‘unrealistic and unethical not to report
anomalies that may ‘leap to the eye’ (Fitzgerald, 1999, p.805; Getz & Kirkengen,
2003, p.2046), their reporting is likely to continue.
The conviction that every anomaly must be disclosed, regardless of its predictive
power or veracity, means that the separate clinical aims of determining gestational
age, obstetric risk, revealing gross or subtle structural abnormalities in the foetus,
and assessing the risk of chromosomal defects (associated with soft markers), are
not selectively pursued in practice. The separate ethical considerations surrounding
each aim, therefore, also become obscured as women who consent to scan to ‘see the
baby’ may be confronted with the uninvited disclosure of screening information.
Obtaining valid informed consent in this scenario is clearly compromised by the
clash of motivation between practitioner and patient, coupled with the ill-defined
and exploratory nature of such open ended screening which makes the disclosure
and discussion of potential findings prior to consent fraught with difficulty.
However, it has been suggested if the purposes of screening and scanning were
segregated, that selective consent for women could be easily accommodated
(Dormandy, Fitzgerald & Baillie, 1999).
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Nuchal Translucency
Another important example of a soft marker that is becoming increasingly adopted
in clinical care is the measure of nuchal thickening or nuchal translucency (refer to
Figure. 1). It is defined as the ‘maximum thickness of subcutaneous translucency
between the skin and soft tissues overlying the cervical spine’ (Nicolaides, Azar,
Byrne, Mansur & Marks, 1992, p.867). In combination with other risk factors
determined from blood biochemistry39F
40 and maternal age, the measurement of the
nuchal fold is used to assign an overall, age-adjusted risk to each individual
pregnancy. Nuchal measurements must be taken at a specific time in the pregnancy,
between 11 weeks and 3 days, and 13 weeks and 6 days40F
41, as the results may be
skewed significantly by the gestational stage of the pregnancy.
Figure 1. Ultrasound picture of foetus showing increased nuchal thickening
(http://www.mater-imaging.com.au/images/nuchal2.jpg)
As a relatively new scan, nuchal translucency has been introduced largely under the
unquestioned and entrenched rubric of the existing and widely accepted routine of
the 18 week ultrasound, further blurring the exercising of choice as the separate
clinical aims of this test may not be clearly differentiated by some women. Pilnick
(2004, p.451) further notes that the choice to undergo nuchal screening is often
presented in terms of ‘old versus new screening practice, rather than a
straightforward choice between screening and not screening’, a mode of
40 PAPP-A (Pregnancy associated plasma protein) and the free beta subunit of hCG ( Human Chorionic Gonadotrophin) (Kuppermann & Norton, 2005) 41 http://www.ranzcog.edu.au/publications/statements/C-obs4.pdf. Accessed 18th June, 2007
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presentation that may portray an expectation of cooperation. One midwife in this
cohort expressed concern that nuchal translucency was referred to as ‘the 12 week
scan’, a descriptor that normalised participation and obscured its intention and
purpose,
You’d certainly hope they [GP’s] would be giving the appropriate information that it was a screening test for genetic abnormalities, particularly Down syndrome, but that it was …..only a screening test and that there would be consequences if it turned up a higher risk…………I don’t know that many of them even knew that. To them it was just ‘the 12 week scan’……Midwife 3.
Commenting on mothers’ understandings of ‘the 12 week scan’, this midwife further
observed,
Most people assume they will have a normal baby and for most people that 12 week scan is an opportunity to see their baby…. are they taking the 12 week scan the same way [as the 18 week ultrasound] without really, really understanding……. what we’re doing ? Midwife 3.
Even if the widely held position that there is no physical risk to mother or child from
ultrasound is ultimately proven to be true, although this assertion is questioned41F
42,
there are numerous additional risks or potential harms associated with the reporting
of the false positives linked to soft markers and nuchal screening including:
• Exposure of a normal foetus to the unnecessary risk of amniocentesis
which is reported to carry a procedural miscarriage rate of 1:200
(Alfirevic, 2003; Boyd et al., 1998; Egan & Borgida, 2002). Although
more recent analysis of miscarriage rates associated with amniocentesis
suggest a significantly lower miscarriage rate of 0.06% (Eddleman et al.,
2006), the individual clinical skill of the practitioner has already been
established as a significant variable determining miscarriage from this
procedure (Herman et al., 1999; Kornman et al., 1996). It seems likely,
therefore, that the invasive nature of amniocentesis is accompanied by
some increased risk of miscarriage to the pregnancy, even if this risk is
small.
• Psychological harm to the mother resulting from ‘considerable short
term anxiety’ and distress of a false positive result (Watson et al.,
42 See Bellieni et al., 2005; Bricker et al., 2000; Buckley, 2005; Neilson & Alfirevic, 2000 .
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2003, p. 569; Zamerowski, 1999). A significant body of research
exists noting the presence of anxiety or depressive reactions, in
mothers undergoing prenatal screening which are not necessarily
related to the invasiveness of screening or to the outcome of the test.
These potentially ongoing psychological harms are considered more
thoroughly in Chapter Eight.
• Finally, the risk of terminating a normal foetus based on the presence
of a soft marker which, contrary to medical advice, is not confirmed
by further testing as reported by Boyd et al (1998).
While ultrasound is a powerful diagnostic tool for particular physical anomalies, it is
not a diagnostic tool for genetic or chromosomal conditions. Within the cohort of
this study, the distinction between the clear diagnostic result from amniocentesis and
the preliminary and unverified nature of ultrasound or accompanying blood
biochemistry screening procedures was not well understood by mothers. Several
practitioners expressed deep unease that this fundamental differentiation between
screening and diagnosing, so critical to understanding the nature of prenatal testing,
seemed so poorly grasped and difficult to communicate as evidenced in the
following comments.
I would certainly say that a lot of people who have a nuchal translucency do not probably understand, particularly the younger women. I think women over 35 do understand it’s a screening test for Down syndrome, and a lot of them do ask for it, because they don’t want to have the other test but I don’t know that a lot of them really understand the difference between screening tests versus a diagnostic test. Obstetrician
The word ‘screening’ they really don’t understand that…..so when I break that down and explain that we can’t say yes or no, they are surprised……….so….. it never surprises me that some of the words that we take for granted in everyday use, are words that we think people will understand, but they don’t really understand what that truly means………Genetic Counsellor 2
Regardless of existing understanding about the certainty or veracity of the tests
undertaken or the results given, the revelation of ultrasound markers that may be
statistically linked to chromosomal anomalies inevitably leads to the offer to
undergo further, more invasive diagnostic testing such as amniocentesis to secure a
definitive result, if only for a limited number of conditions.
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Amniocentesis
On receiving a ‘high risk’ categorisation from nuchal translucency, blood serum
screen or ultrasound, the next step for women who want definitive diagnosis of
certain conditions (though not all) is to have an invasive amniocentesis during
which some amniotic fluid, which contains foetal cells, is removed from the
amniotic sac surrounding the foetus (Marieb, 1992). Foetal cells are cultured and
may be karyotyped to reveal particular chromosomal abnormalities, most commonly
trisomies 13, 18, 21 or other aneuploidies including Turner’s syndrome,
Klinefelter’s Syndrome, Edwards Syndrome or Patau Syndrome for example.
Routine amniocentesis does not look for specific genes or genetic disorders,
although if there is reason to suspect a particular familial genetic disorder such as
Cystic Fibrosis, Huntington’s Disease or Duchene’s Muscular Dystrophy for
example, more specialised testing may be undertaken. In a routine amniocentesis,
the overall structure and shape of the chromosomes may flag markers of other less
common genetic conditions42F
43. Importantly, however, normal chromosomal shape
and structure at the macro level does not guarantee the absence of a genetic disorder
at the micro level of nucleotide sequencing of individual genes. Since its first
introduction in the 1970’s, the list of conditions that may be diagnosed via
amniocentesis has grown, although it is by no means comprehensive. While the most
common genetic anomalies are looked for, numerous more rare conditions remain
undetected. Thus while amniocentesis gives a definitive diagnosis for the limited
number of specific conditions analysed, the list of potential conditions unable to be
prenatally diagnosed remains vast.
As this procedure is usually performed at 16-17 weeks, and comprehensive results
may take several weeks to complete, a limited time window exists between
diagnosis and possible termination before the medically desired43F
44 gestational limit
of termination at 20 weeks. In recent years, in an attempt to confirm earlier
diagnoses, amniocentesis has been performed at 9 to 14 weeks; however, an
43 See www.genetics.com.au.(Accessed 17th April, 2006) Sincere thanks to the genetic counsellors interviewed for providing access to this additional information. 44 Pregnancy termination is medically preferred before 20 weeks as the procedural risks to the mother increase with increasing gestation. Often the 20 week limit presumed is not legally set, and many states in Australia have varying interpretations of the legal permissibility and preferred gestational limits.
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increased miscarriage rate of up to 1:20 or 5% (Alfirevic, 2003) has been reported.
The application of amniocentesis later in the pregnancy, resulting in later
terminations, is considered to be a detraction as earlier diagnosis and termination is
believed to be less confronting or affronting to parents, a view echoed by one GP,
It’s appropriate [to discuss termination] when you review them at about 10 weeks….because at 10 weeks, you’re in a position where a termination is of less a medical or surgical insult than perhaps at 16 weeks …General Practitioner 1.
The view that early termination was less likely to create psychological harm
however was not supported by Neugebauer et al (1997) who concluded that the
likelihood of depression after termination ‘did not vary significantly by history of
prior reproductive loss or by maternal age, nor did risk vary by time of gestation or
attitude toward the pregnancy’ (Neugebauer, Kline, Shrout, Skodol, & al, 1997,
p.383), suggesting that the gestational stage of the pregnancy is not the dominant
causal factor when pregnancy loss results in feelings of emotional trauma.
An emerging issue that has not been widely researched to date is the intense
psychological distress experienced in the growing time gap between identifying a
potential problem by nuchal translucency at 11-12 weeks gestation and the
potentially five to six week wait before amniocentesis can be performed effectively
at 17-18 weeks gestation. This situation was experienced by Mary, one of the
mothers who participated in this study. She explains:
[E: So you had the nuchal at 12 weeks?] Mmmm….. [E: And when did you have the amnio?] I had the amnio at 17 ½ weeks……[pause] ……. [E: How were those 5 ½ weeks of waiting?] Harrowing... [sighs]…that would be the best way to describe it……….I was a basket case…I didn’t know what to do….who to talk to ….. It had only just been developed, it was only just out there…..and there was really no-one to talk to. My obstetrician seemed to think that there was going to be no problems based on the scans, whereas the ultrasound specialist said because of the blood work this is what is going to happen.….I had the amnio the week before Christmas, and they said they should have enough cells and could have the results in three days……….Christmas eve we get a phone call. “Well we’ve got some results for you, but you’ll have to wait a week before we get the rest” because they didn’t have enough cells. So we got the first lot of results on Christmas eve, and the next lot on New Years eve, we got the all clear that bubby was fine…………so instead of taking three days it took nearly three weeks for us to get results……… which was just a nightmare.
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[E: So… are you saying the whole process took around 8 weeks…. is that right?] Mmmm…[pause]…..… almost 8 weeks of not knowing……trauma really….. I was actually prescribed sleeping tablets…….and then he was perfect, absolutely nothing wrong with him……………yes. [E: How did you feel when you were finally told that everything was OK, the test results were fine?] I just felt like screaming…………at everyone………….just for the whole….I was really glad that everything was OK…..but I didn’t like the way it was done…….if that makes sense…… [E: What was it specifically that you didn’t like?] I just…… sort of………being sat down and being told, OK… your baby‘s probably going to have Downs, and probably won’t survive………Your baby has a 1:32 chance of making it to full term …..And it’s just not something you like to be told…. …..And then to be told ‘we can find out, but you have to wait another 4-5 weeks before we can do that’….[sighs] Mary
While the informing and consenting protocols surrounding these tests have tended to
focus primarily on the physical risks, the risk of psychological harm is keenly felt by
women and potentially extremely damaging. Paradoxically the clinical improvement
of the earlier 11 week nuchal scan may in fact be intensifying the possible
psychological harms by lengthening the time gap between raising the initial alarm
and performing the diagnostic amniocentesis, optimally at around 17 weeks
gestation. Psychological harm from prenatal screening is well documented, yet
appears to be rarely factored into clinical assessment of the efficacy of screening, or
cost benefit analyses. The fuller implications of these potentially ongoing
psychological harms of engaging in prenatal screening will be more thoroughly
considered in Chapter Eight.
The following section, Section B, consists of Chapters Five through to Eight. This
section explores each of the participants’ voices in the broader context and themes of
existing research understandings. Participant stories are woven through the ongoing
and evolving conversations between other mothers, practitioners, scholars and
researchers working in this field.
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SECTION B
VOICES IN CONTEXT: ILLUMINATING PRACTICE, IDENTIFYING
CONSTRAINTS
Introduction
‘Evaluations of women’s decision making with regard to PD [prenatal
diagnosis] – and women’s decisions are judged widely and are central to the
professional debates surrounding PD. In contrast women involved in PD as
participants are rarely involved in publicly judging and evaluating the
decision making of the other players in PD programmes: those whose
decisions frame women’s own options’ (Brookes, 2001, p. 3).
The first three chapters articulated some of the background context in which prenatal
screening occurs, and gave an account of the ethical orientation of this research. As
a consequence of the particular ontological stance flowing from the
phenomenological philosophical tradition embraced in Chapter Two, Chapter Three
explained why a narrative mode of inquiry complemented the research aims both
ethically and methodologically. Having garnered individual accounts from the
nineteen participants, and considered the emerging themes, plots and contrapuntal
voices through analysis using the Listening Guide, the next task of this research was
to situate these participant voices within the broader context and themes of existing
research understandings, to weave the participants’ stories through the ongoing and
evolving conversations between other mothers, practitioners, scholars and
researchers working in this field.
Historically, as Brookes (2001) remarks above, women’s stories have been
significantly excluded from socially endorsed views of how the ethical aspects of
prenatal screening, which are predominantly framed by others, are represented to
and received by women. Therefore, in the next four chapters, the mothers who
participated in this research share their personal encounters with prenatal screening.
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While this research exposes many of the constraining factors that deny women full
ethical decision making capacity with respect to prenatal screening, inevitably the
array of options made available are significantly constructed by the perceptions,
presumptions, prejudices and beliefs held by health care practitioners. As
practitioner perceptions are integral in shaping the ethical terrain encountered by
women, their perspectives must also be included in any comprehensive analysis that
seeks to illuminate and potentially transform the numerous constraining factors
women face. Significantly, the perceptions and possibilities of both groups are
defined by the further layers of embeddedness in the organisational cultures and
practices surrounding screening. As each individual stakeholder has unique and
particular insights into the processes of prenatal screening, either as provider or
recipient, the combined analysis of all nineteen stories, each of which individually
illuminates, supports, contradicts and/or challenges the others, allows a larger,
jointly constructed, and hermeneutically informed collective picture to emerge.
Building on the four dimensional ethical framework44F
45 outlined in Chapter Two
(Isaacs and Massey, 1994), the following four chapters could be considered as
attending to the hermeneutical and appreciative dimensions of the ethical, paying
particular heed to the reasons, justifications and explanations participants offer of
their experiences. As Isaacs (2003) notes, the decision to take an appreciative stance,
or dispositional interest, compels us to actively recognise another’s humanity,
dignity and unique presence. In doing so we are enabled in our ability to relate to
another’s complexity, particularity and unique humanity. In terms of this research, in
attending to the appreciative dimension, I sought to understand and approach each of
the nineteen stories within the broader personal, social, political, historical and
institutional contexts that gave shape and situational meaning to their account.
Thinking appreciatively was particularly important when responding to participants’
comments, many of which were initially challenging. In a practical research sense,
one example (of many encountered) of how an appreciative stance informs this
research analysis can be illustrated through the following story. Leanne, a 32 year
old mother of a young toddler, originally seemed flippant and abrupt in her
explanation of why she actively pursued amniocentesis screening. Even after her
45 Hermeneutical, Appreciative, Appraisive, and Transformative.
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doctor advised her that her extremely low risk of 1:3000 45F
46 of having a child with
Down syndrome46F
47 made amniocentesis an unnecessary medical risk, Leanne was
determined to pursue this testing regardless of the potential miscarriage risk related
to this procedure. She explained, The first time we tried, we conceived so I felt lucky in that I was fertile, I knew there were no problems ‘down there’ (laughs)…. so I felt well….. I haven’t got the strength of character to bring up a disabled child ….. We conceived first time, so I thought well……. [hesitates] I would have terminated if I knew it was Down syndrome. I knew we could conceive quickly…….. It was just because I knew that someone has to be ‘the one’ and I didn’t want to be. … [E: Are you saying that regardless of what the risk factor you were told you would still have had the amnio because…..you may have been ‘the one’?] Yes, in the first 10 minutes of my 9 week visit to the obstetrician I told her I would have it done. And she was like ……….she wasn’t going to put me off because she could see I was quite strong about it. Leanne
Later in the interview, referring to her faith in her fertility Leanne explained, But I’m really lucky………. I can be a bit picky. Leanne
Leanne’s approach to this decision as a rational matter of quickly dispensing of and
replacing one defective child with another, better child was disarming. However,
throughout the course of the interview, it became clear that Leanne’s determination
to have all available tests was primarily motivated by fear; fear of disability and fear
of losing control. Throughout the interview, she frequently referred to a fear of
disability and repeated her conviction that she didn’t have the strength to care for
such a child. She further explained that she had ‘bad luck’ and could not accept such
‘bad luck’ for her child. She constantly referred to her anxiety that she could be ‘the
one’47F
48 who had the disabled child. As a self described ‘control freak’, Leanne felt
compelled to embrace any tool which increased her sense of taking charge of the
unpredictability of the reproductive lottery. She explained,
Of course you still worry about loads of other things that you have no control over. At least this I had control over, everything else I had no control over, but that I had control and I’m a bit of a control freak so…….. one thing I could eliminate after all the things you worry
46 Determined from combined Nuchal Translucency and blood test. 47 While amniocentesis can diagnose a number of chromosomal anomalies, Leanne spoke solely in terms of Downs Syndrome and seemed uninterested or unaware of the many other conditions that could be diagnosed using this test. 48 Leanne made specific reference to not wanting to be ‘the one’ with the disabled child fifteen times throughout a 90 minute interview.
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about when you’re pregnant , did I drink too much in the beginning, could it be born with a funny heart, well at least I know he doesn’t have that…. he doesn’t have Downs. . Leanne
And later in the interview
If I’m going to bring up a child for the next 20 years I’ve got a small amount of control and choice what condition it’s got, so I just can utilise that [technology] and I would do so a second time even although I know what I could lose, I could lose a child, and this could be it, but I’d rather be sure that they didn’t have a severe disability …..I’d rather know. . Leanne
In appreciatively considering these comments as being shaped by underlying
anxieties, elements of Leanne’s story quickly spiralled outwards, illuminating the
broader social and situational considerations that drive women’s decision-making in
this context. The many influences that were underpinning her behavioural choices
and her capacity to exercise informed consent became clear when considering
Leanne’s position appreciatively and hermeneutically. The considerations identified
by Leanne included the perceived need to be reassured, strong personalisation of
‘generalised’ risk factors, faith in technology to deliver a healthy child, and socially
entrenched stereotypically negative attitudes to disability. Hence the wider social
and cultural roots of Leanne’s currently held position were illuminated through the
appreciative and hermeneutic consideration of her story. Similarly, I have sought to
contextualise and value the experiences of all participants, to disclose or seek out the
necessary layers of interpretation that give crucial contextual meaning to each
account. These voices in context provide a rich and in–depth source of
understanding of the lived reality of individual experiences, and thus form a
valuable basis for reflection and suggested practice reform.
Collectively the Chapters of Section B simultaneously attend to the first three areas
of research outlined in the introduction48F
49. These areas are:-
1. Autonomy and Informed Consent.
While Chapter Two discussed the philosophical foundations and some of
the theoretical limitations of autonomy and informed consent, Chapter 4 will
expand upon these understandings by incorporating the experiences and
beliefs of participants revealed through their individual accounts. Their
49 See Chapter One
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encounters and explanations are incorporated into, and considered in light of,
existing research and understandings.
2. Constraints on Consent.
Existing research, predominantly from the United Kingdom, United States of
America, Canada and Europe identifies many problematic issues inherent in
currently accepted biomedical practices and consent protocols of prenatal
screening. A range of barriers to informed consent including philosophical,
institutional, social and personal barriers significantly shape and limit
women and practitioners in their capacity to have the necessary ethical and
educational conversations prior to engaging in screening. These barriers will
be identified and explored in the following four chapters as indicated by the
research participants.
3. Local Experiences.
Through the voices of the nineteen participants, individual and local
experiences in relation to the numerous constraints identified above will be
considered and compared to the constraints identified elsewhere. Additional
constraining factors that emerge from the experiences of this cohort flag
blurred accountability for informing between practitioners for patient care
and education ; an underdeveloped evidence-based culture of medical
practice when monitoring prenatal screening outcomes in Queensland; and
consideration of how the legal status of termination in Queensland
contributes to the culture of privatisation, hiding and silencing.
Within the realm of prenatal screening the constraints that shape and mould how
choice is constructed and whether informed consent is supported may be loosely
categorised into four porous groups being,
• Philosophical constraints arising from the often thin and narrow
interpretations of the ethical as realised through the exercising of
personal autonomy, choice and informed consent. Further
compounding these issues, the atomistic connotations implicit in the
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dominant interpretations of the philosophical concept of autonomy
entrenches an individualistic view of the self which undermines the
deeply related and embedded nature of decision-making. As outlined
in Chapter Two, the danger in adopting an intellectual commitment to
externally imposed philosophical reason at the expense of
hermeneutically aware, collaborative negotiation may potentially
narrow the view of what is permissible as an ‘ethical’ issue. Finally,
by representing moral decision making as a detached and singular
event rather than an ongoing, evolving, embodied and embedded
process with far reaching relational consequences, the ethical
considerations that precede clinical intervention may have become
undermined.
• Institutional constraints include the routine nature of testing which
obscures voluntariness, hierarchical power dynamics within
institutional settings both inter-professionally and between
patient/carer, and overt and covert counselling. Additional
institutional constraints include poor educational opportunities for
practitioners and patients, blurred accountability amongst various
practitioner groups for informing, inequity of access to testing and
the ever present time constraints of production-driven models of
institutional care.
• Social constraints emanate from the realisation that the choices made
available to women are significantly delimited by societal and peer
expectations of ‘responsible pregnant behaviour’ (Lippman, 1991).
Trust in science to deliver a healthy child becomes enmeshed with
maternal and practitioner feelings of blame and responsibility if a
disabled child is undetected, as embracing technology may abrogate
blame. Poor understanding of disability, the predefining of certain
physical/intellectual conditions as unacceptable, and inadequate
social support for disabled persons further shape behaviour,
behaviour that is deeply influenced by the political, legal, historical
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and cultural contexts in which such practices evolve. These social
precursors to how screening is developed, presented and interpreted
remain under acknowledged in the dominant and decontextualised
account of ethics.
• Personal constraints include the socially constructed ‘need’ to be re-
assured, the ‘self evident’ need to screen to reduce the increased
levels anxiety that flow from the discourse of risk that surrounds
pregnancy, poor understanding of the probabilistic and statistical
language of risk, and a lack of familiarity with the medical
procedures, processes and terminologies that the mother may
encounter.
These multiple and potentially choice constraining considerations overlap and
interweave, mutually feeding each other in the complex web of constructive and
destructive interactions that ultimately direct individual perception, behaviour and
‘choice’. Additionally, the critical combinations that culminate in a woman
experiencing constrained agency or diminished choice occur differently for different
people. Consequently these constraining features cannot be rigidly considered as
linear or hierarchal. Rather, they are subjective, intersubjective and interplaying,
further invoking Gilligan et al’s (2003) notions of simultaneously co-occurring and
contrapuntal threads that may create a unique pattern of either resonance or
dissonance. However, if our aim is to understand and support ethical decision
making in antenatal care locally, we need firstly to understand the various sources
and potential consequences of these constraining factors, to articulate their role in
the shaping the actual practice encountered by pregnant women and their
practitioners, and to assess whether the constraints identified in overseas research
are echoed locally. Each of these four areas will be considered in more detail in the
following four chapters.
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CHAPTER 5
VOICES IN CONTEXT:
PHILOSOPHICAL CONSTRAINTS
Introduction
The desire that a person should act voluntarily from a position of knowledge and
understanding, to give their voluntary ‘informed consent’ to any medical
intervention, and be supported in their capacity to exercise free will without
coercion, is widely valued in Western society (Manson & O’Neil, 2007). Since its
inception with respect to research participants outlined in the Nuremberg Code in
1947, and reinforced in subsequent versions of the Declaration of Helsinki, the
specific requirement that practitioners seek patient consent has extended to clinical
care. Over the past four decades seeking consent from patients prior to medical
treatment has become ingrained in health care practice49F
50 (Beauchamp & Childress,
2001). Regarded as preserving individual patient autonomy, reliance on informed
consent as a means of ensuring ethical probity in clinical practice has consequently
become ‘so well entrenched that [it’s] presence, indeed [it’s] necessity, and
justification are rarely questioned’ (Manson & O’Neil, 2007, p.2).
Yet despite the obvious value placed on informed consent, current approaches to
actualising it in practice, which significantly focus on attaining the minimal legal
requirement of information disclosure, are significantly failing to achieve the ethical
ideals of intentional, voluntary and understood (by patients) intervention. A growing
body of literature confirms that low levels of informed consent, from an ethical
perspective, persist across a range of medical practices, including prenatal screening
(Bottrell, Alpert, Fischbach, & Emanuel, 2000; Braddock, 2002; Braddock et al.,
1999; Wear, 1998), and the presumption that legally permissible informed consent
necessarily incorporates the moral aspects of decision making appears flawed.
50 Manson and O’Neil (2007, p. 5) argue that the extension of informed consent protocols to clinical medicine was unwarranted due to the different purposes and intentions of clinical and research medicine.
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In a health care climate where practitioners and patients commonly claim to value
and aspire to meet the ethical standard of understood, or informed consent, the
widespread failures observed suggest more fundamental and underlying causes.
Research further suggests that patients for the most part desire fuller understanding
of their medical care (Leithner et al, 2006) and practitioners for the most part are not
wilfully withholding such information. Therefore, exploring the contextual and
theoretical foundations and presumptions that underpin the ethical requirements of
informed consent may provide some insight and explanations for the weaknesses
observed, and thus better equip patients and practitioners in achieving the ethical
outcomes sought. This chapter will consider the philosophical origins of the
elevation of autonomy and its subsequent linking to informed consent in medical
care. The experiences of participants will be considered in relation to the broader
medical and philosophical discussion of autonomy and informed consent.
The Autonomous Self
The word autonomy is derived from the Greek words ‘autos’, meaning ‘self’ and
‘nomos’, meaning ‘governance’ or ‘rule’. Hence autonomy is understood as
describing the capacity for self governance, for making individual choices, and for
exercising free will. A further inherent characteristic of autonomy is that such self
governance should be free from the control and interference of others. Hence
Beauchamp and Childress (2001, p.58) propose that there are two essential
conditions of autonomy being (1) liberty or freedom from control, and (2) agency,
which they describe as the capacity for intentional action. Respecting a person’s
autonomy thus requires not only the acceptance that they are entitled to make
choices based on personal values and beliefs, but extends, in some instances, to the
actions of enabling and supporting such autonomous choice even if it seems at odds
with conventional rationality (Beauchamp & Childress, 2001, p.63).
Most writers begin their exploration of the concept of autonomy with the work of
Immanuel Kant who argued that respect for autonomy flows from ‘the recognition
that all persons have unconditional worth and the capacity to determine their own
moral destiny’ (Beauchamp and Childress, 2001, p.64; Manson & O’Neil, 2007,
136
p.17; Faden and Beauchamp, 1994). However, Kant’s initial account of ‘autonomy
of the will’ is not the commonly accepted account of liberty, agency based on
understanding, that permeates bioethical discussions today (Beauchamp &
Childress, 2001, p.351). Rather Kant regarded autonomy as the capacity to act
rationally, within the requirements of the universally applicable categorical
imperative (ibid).
Our collective expectations of autonomy have however evolved and more
contemporary incarnations commonly present autonomy primarily as individual
independence. It is on these more individualistic understandings that the currently
prevalent informed consent procedures are premised. Manson and O’Neil (2007,
p.18-19) explain,
‘It is easy to see why those who see autonomy as a matter of individual
independence link it so closely to informed consent: informed consent
procedures protect individual choice, and with it individual independence,
hence individual autonomy. So if we can show that individual autonomy is a
fundamental value – better still the fundamental value – and that it can best
be protected and implemented by informed consent requirements, it may
prove possible to justify informed consent procedures as required if we are
to respect autonomy.
Thus the debate rages over whether autonomy is a matter of ‘mere sheer choice’
(Manson & O’Neil, 2007, p.19), or whether autonomy is a matter of choice within
the confines of rationality and culturally acceptable parameters. Clearly, both
conceptions have flaws, the sheer choice position demands that all choices
regardless of their potential for self harm or dehumanisation be supported, and
individual choice based on reason and rational thought begs the question of whose
conception of rationality is privileged ( Macintyre, 1984). Thus Manson and O’Neil
(2007, p.22) conclude that ‘all of this suggests that appeals to individual autonomy,
however conceived, are unlikely to provide convincing justifications for informed
consent procedures’.
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However, the belief that informed consent protocols formalise respect for autonomy
seems firmly embedded in a social and cultural sense and is, therefore, expected
clinically. From a theoretical perspective, the detached autonomous, individualistic
‘I’, who will rationally consider their accessible options and give an unencumbered
and reasoned response to the question ‘what ought I do’, is largely a product of the
ontologically flawed modernist conceptions of the self as discussed earlier in
Chapter Two. While this concept of the ‘autonomous self’ has colonised orthodox
bioethical discourse, as Isaacs (2007, p.3) noted earlier, ‘this self is not a human
self’, it does not reflect the lived reality of human ‘being’ or enhance understandings
of how deeply embedded decisions are interpreted and made. People do not ignore
personal sentiments in moral reasoning, nor are they detached from sentimental
consequences (Sherwin, 1992). They are intentionally partial to family and friends
and have mutual obligations of care, responsibility, trust and affection. Hence, while
an individual may consider themselves to be rational and independent to a degree,
they are unquestionably and primarily embedded and embodied beings with
particular roles and responsibilities that may present non-negotiable constraints on
their ability to act in a purely individualistic or rationally considered way. Although
these alternative ways of being are often represented as competitive or mutually
exclusive, as noted earlier (Friedman, 1997, p.45), autonomy has many coexisting
facets. Social relationships, contexts and practices are not separate from autonomy
or individuality. Rather, social context and interdependence are an integral part of
realising self governance. Autonomy and objectivity therefore need not be
positioned competitively against relationality and subjectivity as mutually exclusive
positions.
Other assumptions embedded within the narrowly defined biomedical application of
the principle of autonomy are:
a) That the person making the decision, and not the community to which they
belong, are the final arbiter of the integrity of the decision made.
b) That if a person is equipped with the relevant information, has the cognitive
capacity to decide, and the ability to resist coercion, that internal barriers to
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choice, such as the need to conform to expected societal norms, are deemed
to be absent (Oshana, 2001).
c) That real access to a variety of options actually exists, and can be readily
accessed (ibid).
d) That relationships with others are supportive, both psychologically and
socially, and there is no consequence of abandonment or retaliation if a
choice is made that others, upon whom the person may depend, oppose
(ibid).
In response to the first point, women may fulfil many roles within a community such
as mother, partner, or responsible citizen to name a few, and thus have competing
responsibilities (Bridle, 2002; Lippman, 1999a). The best outcome as a mother may
be in direct conflict with the best outcome perceived by society at large. For
example, the birth of a child with a disability may be rationally and objectively
viewed as an unwanted burden or financial drain on society that should be resisted
by a responsible citizen, or conversely, subjectively viewed as an event that elicits
great compassion, joy, support and love within the child’s family. These two
positions are irreconcilable, yet in deciding whether to embark on prenatal
screening, women must balance these opposing concerns.
Access to and awareness of the range of available options is another source of
contention, with the routine incorporation of screening obscuring the voluntary
nature of participation. Many women interviewed in previous studies did not
understand that refusal to screen was an option, resulting in a clinical norm where it
was harder to opt out than in. Women who sought the alternative of non-
participation reported feeling labelled as ‘difficult’ or ‘unco-operative’ (Press &
Browner, 1993, 1997; Santhalahti et al., 1998; Williams et al., 2002c). The
expectation of participation inherent within ‘routine’ practices threatens to erode the
validity of any consent given and calls into question the notion of ‘choice’, when no
workable alternative is offered (Lippman, 1999a). Deference to the language of
individual choice may ring hollow when alternative pathways are not explicitly
offered. Indeed, under these circumstances choice may become acquiescence to the
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least detrimental of several unappealing options, rather than the ethically sought
after, understood, and intentional action.
Narrowly defined and reductionist views of autonomy may further exclude the
broader contextual factors of moral decision making by firmly focussing attention
on aiding the physician ‘getting’ consent (Manson, 2007, p.301). Consequently, the
bioethical discourse that informs the development of institutional practice and
policy, and which directs and dominates debate, become practical questions
concerning the quantity of information that is required to be disclosed (Manson &
O’Neil, 2007, pp.28-49). Additionally, much energy is invested into the
development of contrived ways to ‘measure’ consent to provide affirmation or proof
to practitioners50F
51. The patient, while being the subject of consent, the person giving
the waiver, is conspicuously absent from these deliberations. Dodds (2002, p.213)
explains,
‘the narrow focus on consent as the sole locus of autonomy considerations in
medicine has worked to constrain debate about autonomy in health
care……Identifying autonomy with informed consent in health care makes it
easy to overlook other limitations….Identifying respect for autonomy with
informed consent presupposes that ethical concern should be directed to the
actions of the physician in obtaining consent (whether the physician gives
full and adequate information, whether the physician has unduly influenced
the decision of the patient, whether the physician explains the information
clearly, etc) and not to the decision making process of the patient . Finally
the focus on informed consent ignores the ways in which health care
practices influence the development and demise of the capacity for personal
autonomy’.
Autonomy, when understood as rationally considered, unencumbered, and
individual choice thus provides too shallow an account of selfhood to form a secure
basis of meaningful ethical deliberation in health care as it fails to specifically 51 One such example is the Multidimensional Measure of Informed Consent (MMIC), See Marteau, Dormandy, & Michie, 2001; Michie, Dormandy, & Marteau, 2002.
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acknowledge the consequence of individual actions on others, or the deeply
relational and embedded nature of decision making. Thus Manson and O’Neil
(2007, p.19) conclude,
‘Individual autonomy cannot be the sole principle of medical or research
ethics, and consent requirements that protect individual autonomy cannot be
the sole criterion of ethically acceptable action.’
Autonomous Voices
The embedded and relationally defined nature of human being with its
accompanying plurality of goods necessarily creates conflicting desires. As Charles
Taylor noted earlier, the difficulty in negotiating the ethical is often not in discerning
good from bad, but more challengingly, discerning goods from competing, mutually
exclusive goods (Taylor, 1989). As the ethical framework outlined in Chapter Two
suggests, people do not generally act purely out of individualistic ‘self’ interest, but
are deeply motivated by their competing desire to preserve relationships of value.
The reality of negotiating conflicting desires, of subjugating the self to protect
valued relationships emerged frequently through the stories of participants. In terms
of practical decision making, the question of ‘what ought “I” do’, as presented to
independent autonomous women, was inevitably enmeshed in the opinions and
expectations of significant others, taking into consideration what they thought ought
be done. For example, Mary, who at 29 years old and pregnant with her second child
was given a 1:32 risk of having a child with a chromosomal anomaly from a nuchal
translucency scan, explained her thoughts about what her choices really were given
her conflicting views on termination from those of her partner. She said
I thought about it [termination] every day…..every single day….I just thought this is ………I didn’t know what to do ….In myself I knew there was nothing wrong, and then I had to look at ‘well what if there is’? What do I do then?...In my mind it didn’t worry me whether the baby had something wrong…..but then I had to look at the whole family side of things as well…How we would all deal with that so it was horrible………horrible. Mary
Later Mary returned to this conflict,
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I had decided that I didn’t care whether there was something wrong... I couldn’t terminate…………My other half said…. well we need to weigh up the options and depending on what was wrong….. he said it’s not fair to the rest of us but……………we had completely different views and hadn’t really looked at the outcome because that would mean there would be something wrong and we didn’t want to do that. I know I didn’t……….And he said, you have to consider this………and I said, ‘I’m not……..I’m not giving up hope’, it was very hard……….a very, very hard time………..but yeah…….I wasn’t for terminating and he was…but he said, ‘Well I don’t want to think about that, I know my baby is fine’……………..he was a rock , and I was a mess, an absolute basket case………… but yes ………we were at completely different ends of that . Mary
Mary’s experience illustrates the stark realities of relationally constrained agency
that limited her preferred option. She had been placed in a position where she may
have been called upon to reconcile the irreconcilable, in which she ‘couldn’t’
terminate, but in which her partner had expressed the opinion that keeping any child
with a disability was ‘not fair to the rest of us’. The choice of Mary’s words in
expressing the grave moral distress she was experiencing demand comment. She
described her partner as rational and calm, ‘a rock’, while she identified herself as ‘a
mess, an absolute basket case’. The source of Mary’s intense moral distress was the
looming inability to reconcile the two competing goods before her, her strong
personal commitment to the planned and wanted baby growing inside her, and the
equal commitment to preserving harmony and stability in her relationship with her
equally loved life-partner, coupled with his expectations of her obligations to him
and to their existing child.
Similarly, Danielle touched on the relational nature of decision making, through
constant use of collective rather than individualistic language such as ‘us’, ‘our’ and
‘we’ when she explained,
We were facing the completely hideous decision of aborting this baby or even worse…………………or having a baby with Down syndrome and looking at the ramifications for that child and for our existing children………….for the rest of our lives……………….Danielle
Each of the mothers explained their decision-making process within the context of a
significant relationship with their partner and other children, illuminating the deeply
embedded nature of their decision making capacity, reinforcing Taylor’s (1989)
earlier point that our moral lives and ethical decision making are not shaped by one
‘good’, but rather a plurality of competing goods that must be carefully negotiated,
balanced and fused. Preserving individual autonomy in the context of sustaining
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important relationships is thus necessarily more complex than the simple exercising
of choice suggests as in a practical sense, realising one’s own autonomy is
profoundly influenced, constrained, or supported by the world of others in which
we are situated.
Practitioners, too, struggled with the reality that seemingly competent and
independent women were often impeded, or unwilling, to follow their clearly
expressed intentions, but appeared deeply and blatantly constrained to act in their
own best interests by the wishes of their partners. In discussing a recent case of a
couple who opted to terminate their child, prenatally diagnosed with a cleft palette51F
52,
Midwife 2 remarked,
They were diagnosed, and they had counselling, and they had genetic counselling, they were shown pictures of before and after surgery, ……….all sorts of things, but……it was a cultural problem as well as the baby having an anomaly……….it was just ludicrous really…….and the husband was the main problem…….the husband was the one that did not [emphasis] want an abnormal baby. So convincing him that this was just looks, nothing else ….. which could be easily repaired……….just wasn’t good enough for him, and the poor woman was just distraught about everything. It would be a frightful position to be in ………do you lose your baby on the grounds that your husband doesn’t like the idea of it? Midwife 2
In discussing pregnancy termination, Mackenzie (1995, p.42) offers some insightful
observations about the relationally constructed deliberations that inform decision
making:
‘The decision process focuses on questions of whether you are in a position
to care for it, both now when it is in the foetal stage and more importantly
when it is an independent being; how and whether it can be integrated into
your life and the lives of other, for example other children, whose lives will
also be significantly affected by your decision; whether you feel yourself
able or prepared to provide the physical and emotional care and nurturance
needed in order for both the foetus and the child to flourish. What emerges
from these discussions is that the assumption of moral responsibility in
52 Cleft palette may accompany a range of potential genetic abnormalities, and up to 300 syndromes. In 70% of cases however, the malformation is not syndromal, no other impairments are present and the malformation may be successfully rectified with surgery (Cobourne, 2004). The termination in this case was not performed by Queensland Health.
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pregnancy cannot be constructed just in terms of responsibility towards the
foetus, but has wider focus on the self, on relations with significant others,
and on a person’s other commitments and projects’.
Just as the decision to terminate cannot be constructed solely in terms of
responsibility to the foetus, similarly, it cannot be constructed solely in terms of
responsibility to one’s own personal individual desires. Arguably, when the child in
question has been a planned and wanted child who now carries an unplanned and
unwanted disability, the stakes for many become raised (Asch & Wasserman, 2005).
Detached, rational, and atomistic views of autonomy are, therefore, flawed as a
framework of meaningful decision-making in this context as they dismiss the
fundamentally relational nature of ethical decision making and the fact that each
autonomous act has repercussions beyond the immediate decision maker.
Informed Consent and Choice
As previously suggested, ‘informed consent’, through respecting patient autonomy,
is generally regarded as essential for good quality, ethically robust health care and is
regarded as a successful means of protecting patients from coercion, deception, the
withholding of relevant information, and the problematic paternalism of past
decades (Manson & O’Neil, 2007). When levels of patient understanding are high,
greater acceptance of both positive and negative outcomes in care have been noted,
an outcome which is beneficial for practitioners and patients alike (Braddock, 2002;
Grover, 2003; Marteau & Dormandy, 2001). Despite the obvious problems with
modern conceptions of autonomy, informed consent given freely and based on full
and accurate information and understanding is nonetheless desirable.
As a principle that can be turned into an administrative process, autonomy has
become, in the words of Canadian sociologist Arthur Frank, ‘bioethics’ biggest hit’
(Frank, 2005). Institutionally, deference to patient autonomy and informed consent
as defined by, and driven from within, the medical and legal communities have
come to serve a multitude of administrative and legal purposes. According to
Manson (2007, p.301), these purposes include:
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• Demonstrating ‘proof’ of ethical practice, as patient ‘rights’ have been
incorporated into verifiable administrative processes. In some interventions,
for example, there is an administrative requirement that consent forms are
signed, thus ethical legitimisation is conferred to existing medical practices.
• Providing a defensive legal document lending protection to medical
practitioners against potential legal recourse.
• Distancing medical care from the widely criticised paternalistic practices of
the past by positioning the decisional capacity as resting solely with the
patient.
While the institutional objectives and benefits of being seen to promote patient
choice seem relatively clear, realisation of the claimed benefits for women, such as
increased control over reproductive decisions and access to more choices in care,
remain unrealised for many. For many women and their partners, ‘choice’ inevitably
equates to the expedient acceptance of the most common route, a pathway that is
clearly paved for them long before they realize they are on it (Lippman, 1999a).
While the terms ‘choice’, ‘consent’, ‘informed consent’ and ‘autonomy’ are liberally
scattered through the medical and bioethics discourse with respect to pregnancy
care, in reality, a person’s ability to exercise such choice is restricted by multiple
social, institutional, and personal constraints. Embedded in time, culture, history,
relationships and prior understandings, each individual’s perception is significantly
coloured by the unique layering of these interpretive filters. Many ‘choices’ are
made under non–negotiable constraints, and are situated in entrenched institutional
cultures and practices of which the person themselves may not even be aware. The
question of choice may be more accurately framed as ‘choices made available’. The
danger that arises in adhering to narrowly defined concepts of agency and choice
with their limited orientation is that an overall ethical legitimisation of the
established health care routines has occurred while deeper concerns about inherent
injustices and failures within existing and unquestioned institutional structures have
remained largely unchallenged (Sherwin, 1992, 2001).
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Despite a wide body of social research flagging patient vulnerability and unequal
power dynamics as factors which heavily compromise autonomy and weaken the
capacity to freely exercise agency (Donchin, 2001; Jecker, Jonsen, & Pearlman,
1997; Sherwin, 2001), individual participation is persistently presented as evidence
of ethically sensitive care. As any intervention is taken as fully consensual, the
belief prevails that ‘no injury can be done where the subject is willing’ (Manson &
O’Neil, 2007, p.3). However, as previously suggested, participation or willingness
alone does not automatically demonstrate that such participation is informed, nor
does participation, informed or otherwise, automatically ensure ethical acceptability,
even if it meets the minimal legal standards.
Local experiences of informed consent protocols and their outcomes as experienced
and articulated by members of this cohort significantly mirrored the patterns
observed outside Australia in which women’s actual experiences and knowledge
suggested ill-informed compliance (Bernhardt et al., 1998; Harris, Connor, Bisits, &
Higginbotham, 2004; Kohut, 2002; Markens, Browner, & Press, 1999; Press &
Browner, 1997; Santhalahti, 1999; Santhalahti, Hemminki, Latikka, & Ryynanen,
1998; Stapleton, Kirkham, & Thomas, 2002; Williams, Alderson, & Farsides,
2002c). The stories related by participants similarly highlight the documented
practical struggles in achieving the seemingly elusive goal of informed consent.
Only one of the seven mothers interviewed, Elizabeth, expressed a firm
understanding of the tests on offer and a clear awareness that testing was optional
rather than obligatory. Additionally, she could confidently articulate each test’s
potential outcome and accuracy and communicate the personal and moral meaning
of testing as she interpreted it.
Openly assessing themselves as ill-informed, five of the remaining six mothers
actively described themselves as poorly educated, admitting weak understandings of
which conditions were to be screened for, showing confused interpretations of what
‘risk’ ratios actually meant, displaying inadequate comprehension of the limited
nature of the reassurance sought, and possessing poor knowledge of the proposed
treatments that may be offered. The exception to this observation was the common
awareness that termination would be offered as the ‘next step’ in the event of an
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anomaly being found. While the seventh mother, Leanne, actively pursued all
available screening, describing herself as educated and well-informed, many of her
explanations throughout the interview revealed confusion and misunderstandings of
the details of the testing undertaken. Although Leanne’s commitment to have all
available screening may have made the finer details of any interventions superfluous
as she had resolved to accept all forms of screening regardless, as Therese Marteau
and her colleagues note, active participation without adequate understanding may
still demonstrate a lack of informed consent (Dormandy, Hooper, Michie, &
Marteau, 2002a; Marteau & Dormandy, 2001; Marteau et al., 2001). Potential harms
arising from a false sense of reassurance in response to an amniocentesis that offers
secure, but limited, knowledge also warrants mention. The negative psychological
impact experienced by women who have misunderstood the limited nature of
reassurance from amniocentesis and subsequently given birth to a child with a
disability has been found to be more severe and long lasting than for women who
have had no testing, but also birth a child with a disability (Watson et al., 2003).
Thus limited understanding may exacerbate the harms experienced even although
the screening was intentionally sought.
The following comments offered by mothers captured the range of their experiences. There was no reason given as to why the scanning ultrasound was done. I wanted to see the baby, of course, that was a very exciting thing for me. I was interested in whether it was a boy or a girl. With my first child I saw his face, and I was just …. Well….[laughs] I fell in love with him then, he had the sweetest angel face I’d ever seen, and so I was very keen to see my others as well. It only occurred to me as I was undergoing the ultrasound that they were making measurements of different parts of the child’s anatomy and physique and then I realised, I was thinking, well why are they doing this? I never talked to the radiologist, this is just me thinking, I thought they must be looking for things that were unusual or not right and only then it occurred to me that they were looking for abnormalities. Anne
Penny, a registered nurse expecting her first child, described her nuchal scan as such:
I think it really wasn’t presented as a ‘choice’, it’s just this is what you do…. And being my first pregnancy, I just thought well this is what you do…like every one has this scan and then another one and that’s the process in the medical world…….Penny [E: Did anyone discuss with you what the purpose of the scan was and what the potential outcomes may be?] No…they didn’t…………we were sitting there with the brochure, so I guess they would have assumed we would know something….but no actual discussion about what they were going to do, what they were looking for……through the ultrasound they would say stuff like, ‘we’re looking at the heart, or we’re looking at the brain’ and because I’m a nurse I
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would say, what are you measuring, and ask more medical oriented questions…………..which is when they mentioned the skin fold that would show Down syndrome or the heart that would also show Down syndrome………..through that they didn’t say particular disorders…I knew they would obviously check the brain to see if there was one ..[laughs]…that the heart is functioning... I would say we were moderately informed,…… yes…….., they’re looking for abnormalities…but should they actually find any then we were not informed about the process of what would happen next. Penny
Danielle, Mary and Terri relayed a typical tale in which their practitioner screened
first and explained later. Danielle explained, Basically it was just, go and do it and well talk about it later………Danielle
A similar experience was recounted by Mary,
It’s so….this is how it is….there’s the referral…off you go…..no questions…no ifs/buts/maybe………….I got no information about it the first time ….I just went.
On assessing whether she gave informed consent, Terri reflected,
Well, I thought I did [give informed consent] but it was only later when they came out with all these other things that I felt that there had been a communication breakdown. I thought I did at the time, but as I say in retrospect, I thought I was informed but I obviously wasn’t as informed as I should have been. I certainly wasn’t informed as to what the result would be and the fact that I would have to make choices after that based on what those tests came up with. Pregnancy, well it’s a vulnerable time, and this pregnancy was vulnerable for me, I’m sure there are lots of women in the same boat…. We really need to tread more lightly……… [Later in the interview]. I did ask questions and they were answered very directly, maybe I just didn’t ask the right questions? I certainly mustn’t have with regards to the tests that I had. Terri.
While Leanne was adamantly in favour of screening regardless of her medical need
or assessed risk level, her explanation illustrates another aspect of informed consent,
which occurs when patients demand interventions that are not medically indicated,
but are psychologically valued and desired. Leanne explained how she broached the
subject of screening with her obstetrician. In the first 10 minutes of my 9 week visit to the obstetrician I told her I would have it done. And she was like ……….she wasn’t going to put me off because she could see I was quite strong about it. There and then I told her (the obstetrician) in the first 10 minutes that I wanted to have an amniocentesis because my colleague at work has a Down syndrome child. ……..The obstetrician wasn’t necessarily keen for me to have it done…. she didn’t say in so many words….. but she was a very open-minded lady, but she could see that I wanted it so she accommodated me, we organised it and I said ‘thank you very much’. Leanne
Finally, Elizabeth was the only one of the mothers interviewed who had proactively
and independently educated herself to a high degree about the nature, efficacy, and
risks of the procedures on offer, and had actively decided, prior to having the first
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ultrasound, that she would not pursue further testing if indicated. In answer to the
question, ‘did you feel completely informed?’ Elizabeth replied,
Definitely. Definitely, it was mostly through self-education, but I don’t know whether if I hadn’t had that information they would have volunteered it. The bulk of our support and education came from outside the medical profession; maybe it’s my nature to research whatever I don’t know. We just wanted to find out what we needed to know. The conversation with doctors / midwives was more just clarification. Elizabeth
Collectively, the accounts offered by this cohort of mothers parallel observations
made outside of Australia previously outlined. If informed consent is defined by
adequate information disclosure, voluntary participation, and understanding of the
nature, risks, and implications of the proposed intervention, the comments offered
above suggest that informed consent was not established for six of the seven
mothers in this cohort.
From the practitioners’ perspective, the need to support ethically informed consent
in their patients was acknowledged as important; however, their comments
frequently gravitated towards descriptions of the numerous barriers to attaining the
idealised benchmarks set. While only one practitioner felt that women she saw were
generally well informed, more commonly, practitioners’ comments illustrated the
tensions of negotiating the fluid and complex ethical terrain they traversed with their
patients. These confounding factors included the realisation that informing was a
collaborative venture requiring active patient input, not simply a one-way delivering
of information. Additionally, practitioners acknowledged that the quantity and type
of information revealed could not be a standardised script, but required them to
refine and revise depending on the individual needs and learning capacity of the
particular patient. Issues of practitioner knowledge and preparedness to facilitate the
required knowledge sharing with patients were further recognised as a potentially
significant barrier to developing patient understanding52F
53. The critical time pressures
experienced in clinical care were mentioned as a factor that could lead to expediency
in fulfilling the administrative requirements of consent protocols, while possibly
jeopardising due attention to the moral intentions of the consenting process.
53 This aspect of practitioner training is discussed more thoroughly in Chapter 10.
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Awareness of the legal aspect of consent significantly permeated practitioners’
accounts, with one midwife wearily remarking,
I guess we’re at a stage with informed consent where you just have to do your best and write it down. Midwife 3
In assessing the levels of informedness in their patients, the following comments
highlighting the rarity of achieving informed consent in practice were offered by
practitioners. I think informed consent is intriguing and I don’t know that you could honestly ever say that there is true informed consent, because I still think in the end people hear what they want to hear and listen to what they want to listen to and I think we modify our consent discussions to include what we perceive the patient will understand…that’s certainly one of the issues, you tell the patient what you think they can understand, so you probably will tell an educated patient more than a lower educated patient. ……Obstetrician I think we get so busy and carried away with time, we just say “here, can you sign this” and yes, a lot of trust is put in us, and people hope we’ll do the right thing by them…. They sign it because they need it. They need the procedure done ….but they’re not at all confident that they are really safe…. I think safety is a huge issue with informed consent. Midwife 4 Exactly what does [informed consent] mean…………there is a problem I guess with informed consent, I do have a bit of a problem with informed consent, when talking one to one you’re getting what that person wants to give you and that will come across……….and in situations like that, if it’s a health professional giving the woman knowledge to make her own decision you don’t know that it’s the same from woman to woman…it’s different for different women…….it’s a bit of a minefield………you know…it’s huge really, isn’t it…………. Midwife 3 I think women go in blissfully ignorant…. or at least not fully informed of what the possible outcomes are…Midwife 2 There’s many a woman referred here who doesn’t know why she was referred………. because the referring hospital hasn’t told them anything………………or the GP hasn’t told them anything……….except ….we’ve found a little problem, we need a second opinion on the scan……………and then they come down and we say, yes your baby’s got spina bifida… and they didn’t know that was what was being looked for…..they had no idea…………Midwife 1 Often women who are well informed and well misinformed…..by a bit of web surfing……can be an interesting group of people to deal with because ultimately they may have read a load more than every other patient you deal with, you have to, once again, try and sort out what information they have received and put it in context….General Practitioner 1.
Collectively, these comments reinforce the difficulties observed elsewhere, and
outlined previously, that while women apparently actively participate in these
routine regimes, they commonly do so from a position of poor understanding.
Participation alone therefore should not be interpreted as representing ethically
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informed or robust intervention. These observations raise further questions of how
practitioners may be better equipped to respond to the learning and informational
needs of their patients. A fuller consideration of this aspect of the informing process
can be found in Chapter 9.
Concentration on Down syndrome as the condition of interest featured prominently
in mothers’ accounts as a justification for screening, a focus that provoked comment
from several practitioners. As an awareness of the numerous syndromes other than
Down syndrome that may be indicated by screening is a central piece of information
required to understand the strengths and limitations of testing, the exaggerated focus
on Down syndrome raised alarm for some practitioners. However, one midwife
interpreted some mothers’ preoccupation with Down syndrome as a demonstration
of good understanding saying, Most of them are quite well informed and they know it’s a screening for Down syndrome, and most will say I’m having the Down syndrome screening, so the women that I have encountered are usually quite well informed. Midwife 1
Other practitioners expressed discomfort that the concentrated attention paid to
Down syndrome ultimately created shallow and impoverished understandings which
persisted at the expense of developing more thorough knowledge about the range of
conditions and possible outcomes which potentially could contribute to false
reassurance. Because of that focus on Down syndrome you can lose sight of the myriad of other problems……… that pregnancies can have…..and I do sometimes, more than sometimes, quite often put Down syndrome into perspective and just remind people that this is just one condition …………and peoples’ understanding of what amnio or CVS result gives is just atrocious……Genetic Counsellor 2. I think they’re pretty uninformed, they think they’re only looking for Down syndrome, and when some other condition is picked up, like a heart defect but not Downs, or another condition, I think they don’t realise that’s a possibility….I don’t know what those providers tell them other than Down syndrome and it is targeted for Down syndrome but whether they say other anomalies could be identified at this time?……. Genetic Counsellor 1
None of the practitioners’ or mothers’ accounts, however, reflected any awareness of
the broader social and historical dynamics that determined Down syndrome to be so
universally unacceptable that such resources and energy should be directed at
preventing the birth of children with this condition. The predefining of certain
conditions as undesirable may influence how the offer to embrace the screening
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technology is received (Kenen, 1999). Institutionally endorsed facilitation of the
detection and removal of Down syndrome may suggest screening as an obvious and
rational route to take. Fuller consideration of how social attitudes to disability have
come to permeate screening protocols and parental expectations will be considered
in Chapter Seven which explores the social barriers to informed consent.
Just as Whynes (2002, p.7) concluded that the majority of women expressed
satisfaction with routine ultrasound, ‘accepting the procedure uncritically’, initially
most of the women in this cohort also accepted routine testing uncritically, similarly
accepting and interpreting current protocols at face value and believing that all
routine clinical procedures must necessarily be warranted and safe (ibid). Penny
describes her interpretation of this dynamic, I think there is a level of, if they don’t ask, they mustn’t really want to know….but at the time I didn’t really know what I needed to ask…does that make sense. Penny
However, the creation of a ‘don’t ask/don’t tell’ dynamic ultimately left many
women under equipped and inadequately prepared to negotiate the unforseen
outcomes.
Possibly reassured by their practitioner’s confidence like the women in Whynes’
(2002) study, most mothers in this cohort remained unaware that there might be
potential health risks with repeated ultrasounds53F
54 , that each procedure has an
accompanying false positive rate, that any reassurance may indeed be limited, or that
the list of complications and anomalies not detected by these interventions far
exceeds the list of those that are. Meanwhile, the apparent failure to provide
appropriate, balanced, and comprehensive information in clinical care allows these
seemingly entrenched misconceptions to be perpetuated. For most women, such
misconceptions and false expectations are never revealed, their scans are normal,
and they ultimately birth a healthy baby. However, for the remainder, those who
experience soft markers, elevated blood markers, increased age adjusted risks, or
recommendations of amniocentesis, the anxiety experienced is undoubtedly
compounded by their lack of informedness at the outset.
54 As discussed earlier – see Bellieni et al., 2005; Bricker et al., 2000; Buckley, 2005; Neilson & Alfirevic, 2000.
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Presumed Consent
A final note will be made about the presumption of consent in the medical context,
as this is often the basis upon which screening is undertaken. Clearly consent
doesn’t always require a signature on a form or a verbal agreement, and a
practitioner may reasonably presume that consent is given by the non- verbal actions
of their patient as this GP explained,
If you’re thinking just about routine blood tests, checking a person’s haemoglobin, you know it’s perfectly ordinary practice not to ask for specific consent, there’s an idea of implied consent, like someone rolling up their sleeve to get a vaccination, that’s an active action saying that they consent to the procedure, so, there are all sorts of situations like that where there’s no specific consent form, or even a verbal exchange, but that’s not to say consent isn’t given. General Practitioner 3.
Braddock et al (1999) noted earlier that the seriousness of the consequences of any
particular intervention demanded different rigour in informing for different
procedures. Commonly, the level of consent sought is linked to the level of
invasiveness of the procedure. The most common forms of prenatal screening are
ultrasound based and subsequently non-invasive, hence, less rigorous consent
protocols that undermine active patient participation have become normalised. The
practitioner comments below illustrate the pernicious nature of embracing the
presumption of consent as an acceptable benchmark which may fulfil the legal
requirements of consent, but which arguably falls short of the ethical standard
sought.
I think most doctors have the view that once an appointment is made and a woman has turned up and she lies down on that table then that’s consent………..once she is on the table and the doctor or sonographer explains what they’re looking for and what they’re doing……. I guess that’s taken as informed consent without signing a paper……Midwife 1 I think the medical profession might view informed consent as getting on the bed and saying you’ll have a needle or sitting and looking at a scan….we don’t get patients to sign consent forms for anything here as far as I’m aware…………I mean in the foetal medicine unit…..even for CVS and amnio…it’s something I’ve raised whether we should discuss consent forms…..and that type of thing… but the doctors feel that informed consent is them getting on the bed and laying there. [E: Do you disagree with that?] Maybe?..............I think when I have to sign a consent form it makes me consider exactly what I’m doing so, I guess coming from the genetics side of things we have a lot of consent forms we get people to sign when they have a gene test…so that people understand the implications, the risks and so on…….I find it unusual that they don’t. Genetic Counsellor 2
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This flawed, but critical, presumption that non-invasiveness negates the need for
rigorous consent has infiltrated practice, opening a logical space to regard consent as
somehow less important, and allowing practitioners to equate ‘non-invasive’ to
‘innocuous’. However, this premise negates the multiple potential harms including
the intense psychological harms, which persist regardless of the level of
invasiveness (Kowalcek et al., 2002; Leithner et al, 2004). Kowalcek et al (2002,
p.22) concluded that ‘before examination, the ultrasound group indicated the
highest, although not statistically, level of depressive reactions in spite of it being a
non-invasive test’. In the case of prenatal screening, where the outcome may lead to
the termination of a pregnancy, the ethical stakes are high and consenting protocols
must be rigorous regardless of the level of invasiveness. The potential to uncover
serious health problems with significant implications for parents should flag prenatal
screening in all its forms as an area of intervention requiring a more thorough,
explicit, and ethically secure approach to consenting patients. While we may accept,
as Beauchamp and Childress (2001, p.88) do, that because ‘actions are never fully
informed, voluntary or autonomous, it does not follow that they are never
adequately informed, voluntary or autonomous’, we ought remain vigilant to
institutional practices which erode and undermine the opportunity to examine the
moral implications of any medical intervention.
Chapter Summary
In summary, the experiences of the cohort of this study certainly demonstrate a
consistent failure to achieve the ethical safeguard of informed consent as articulated
in these particular accounts. While respect for autonomy through seeking a patient’s
informed consent may theoretically support freedom of decision making, it does not
automatically follow that a person has been made aware of, or is in a position to
actualise, their preferred option. The socially and institutionally embedded nature of
medical decision making dictates that such decision are always relationally
constructed and constrained. The strong legal bias that informs institutionally
developed consent protocols have focused attention too heavily on facilitating the
practitioner ‘getting’ consent, while inadequate attention has been given to
supporting the reflective understanding of the patient giving consent. Critical
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questions of who informs, what they inform, and for whose benefit the information
disclosed is chosen remain concealed under the dominant paradigm. Yet these
questions form the basis of a hermeneutically aware, ethically responsive, and
inclusive decision making. Thus, the dominant interpretation of autonomy and
informed consent must be expanded to embrace and accommodate the relationally
embedded dimensions of autonomy.
The next chapter will examine some of the particular institutional constraints that
impinge upon women’s and practitioners’ capacities to support informed consent in
clinical care.
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CHAPTER 6
VOICES IN CONTEXT:
INSTITUTIONAL CONSTRAINTS
Introduction
Institutional factors constraining the realisation of informed consent in practice
include the routine nature of screening, overt and covert counselling, and barriers to
communication. Other factors include the pressures of limited time and resources, in
addition to the impact of existing legal frameworks on institutional policy and
practice. Each of these factors will be considered in relation to the wider body of
established research and the stories shared by participants locally.
Routine Testing and the ‘Normative’ Pathway
Previous studies have suggested that the reassuringly routine way in which
screening is presented to women implicitly presumes participation and, therefore,
may obscure the voluntary nature of the proposed test (Green, Hewison, Bekker,
Bryant, & Cuckle, 2004; Lippman, 1999a; Markens et al., 1999; Press & Browner,
1997; Santhalahti et al., 1998; Williams et al., 2002c). Press and Browner (1997)
further suggest that routinisation obfuscates the need for women to make a
deliberate decision and similarly blurs the practitioner’s obligation to intentionally
inform their patients (ibid). However, routinisation may be welcomed by some
women, allowing them to frame such decisions as simple formalities, and thus
bypass the ‘moral work’ (Williams et al., 2005, p.1987).
As understanding the optional and voluntary nature of any medical intervention is a
crucial precursor to informed consent, any routinisation which does not explicitly
alert patients to the alternative choice of ‘opting out’ inevitably compromises the
worth of the consent given. As Green and Stratham note, ‘acceptance of routines
because they are routine means pregnant women do not necessarily make an
informed decision’ (Green & Statham, 1996, p.143). The observation of under-
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informed compliance was evident in the experiences of five of the seven participants
in the mothers’ cohort of this study. For example, Terri, who unexpectedly fell
pregnant with her fourth child at the age of 38 remarked,
I guess because I was a bit older, there were questions asked and it was almost assumed that there were certain things I should do. I was asked quite a few times whether I wanted these tests done. I guess being older, I was 38, because I had gone over the 35 ‘hill’, over the hill [laughs], a lot of the doctors and nurses who saw me were saying “what sort of tests would you like - we need to be careful”…. I felt it was a case of I ‘should’ have the tests……. Definitely, it was promoted as everyone does it, especially if you’re over 35…
Terri further explained,
It was promoted as everyone does it, especially if you’re over 35 … Terri
Danielle, Anne and Penny relayed remarkably similar accounts of the events and
expectations that culminated in their screening experience. I just assumed that’s what you do…it’s routine……..I never imagined there would be anything……….I honestly thought it was just a routine exercise that you had [emphasis] to do……….the hospital said you had to do certain tests at certain times……..in my opinion I don’t think they give you the impression that it’s voluntary……..it’s expected, I don’t know that if you said no……I realise they couldn’t force you to do it…..but, yes, it’s expected………….mostly from the hospital….they have expectations that you do this after this and so on………..so I imagine that you didn’t really, as such, have a choice not to do it. Danielle No, I did not understand that it (ultrasound) was voluntary, when I was told that it was routine , I thought that that it wasn’t voluntary therefore I never questioned whether it was a voluntary thing or not. There was no reason given as to why the scanning ultrasound was done. …….She [GP] said it was a routine scan, she wrote me the form to take to the radiologist and there we are. Anne Basically, the obstetrician said that this was the standard process – it was just like – you have a 12 week ultrasound – here’s your request form and off you go. Yes, everybody does it; I assumed he just sent everybody…I think it really wasn’t presented as a ‘choice’, it’s just this is what you do…. And being my first pregnancy, I just thought well this is what you do…like every one has this scan and then another one and that’s the process in the medical world. Penny
These stories resonate with Santhalahti et al’s (1998) observation that when the
option to test is presented routinely with explicit expectations of compliance,
participation is interpreted as ‘self evident’(Santhalahti et al., 1998). Under such
circumstances it may be harder to ‘opt out’ of the accepted and expected routine
without appearing ‘difficult’ or ‘uncooperative’ (Press & Browner, 1997; Williams
et al., 2002c), as Terri further noted, It does make it harder to say no, because it means that you have to go out of your way to actually say ‘no, I don’t want it’. Terri
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Similarly, Penny encountered pressure from her doctors when attempting to ‘opt
out’ of the expected amniocentesis after her nuchal scan revealed a higher than usual
age adjusted risk. She explained,
So we’re sitting there looking at each other, thinking we’re not going to do anything about it and they’re sitting looking at us saying “Well, you really should have the amnio and that will tell you more definitively if there’s a problem” And it was like we really had to stand our ground, to say no….. We’ve already thought about this ….and we don’t want it… [E: Was that presented as a “you should” or was it more, “here is an option to consider”?] Oh, it was definitely a “you should”….it wasn’t an option....it was an expectation. They were booking an appointment for me the following week to have the amnio, and we were saying, but we don’t want one…….and it was difficult actually to sit there and keep saying “no, we’re telling you we don’t want it…..yes, we understand the risk, you’ve just told us the risk is this percentage”, but for us that wasn’t the point…. [E: How was your refusal accepted by your doctors?] Well, you could see that they thought we were not making the right decision, and that they were concerned for us – they were re-presenting the facts of the results, and re-presenting the low risk of amnio…. And we were like, yes we understand that, but were still not doing it…. Penny
While Penny resisted the palpable pressure to conform to the expected ‘next step’,
for others, such as Mary, the blatant expectations of her doctors, coupled with her
unwillingness or lack of confidence to question the gathering momentum for more
testing created a situation in which Mary later described herself as having been
‘railroaded’ into having an amniocentesis.
The main thing for me was not knowing, not knowing what the different outcomes of the tests were…………..and just being railroaded with it at the time…………… [E: Did you feel railroaded?] Yes……………..I think that’s the best way to describe it……….. [E: Who did you feel was railroading you?] The specialist who gave me the results…………he was very in your face…………..he was very good but very in your face with the results……………he said “shall I book you in for this…[amniocentesis]….its your option but ….if it was my wife I’d be making her do it”…………….OK! ..[sigh]. ….We went home and spoke to our obstetrician before we decided………but even information on that wasn’t readily available either which made it harder. Mary
As these mothers experienced, once such routines are entrenched, they become the
accepted benchmark of care, self-perpetuating, and often unreflectively endorsed.
The tacit social and medical presumptions and unequal power dynamics implicit
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within the institutional frameworks of medical care silently funnel women down the
predetermined normative pathway.
The routine inclusion of newer tests such as the nuchal translucency scan, under the
rubric of an older established antenatal routine of having an antenatal ultrasound has
further blurred the principles of consent and voluntary choice. While Whynes (2002,
p.11) positively notes that ‘… routinisation of use appears to have given rise to
routinisation of subject acceptance’, when women are conditioned to expect
particular interventions, the extension of accepted protocols such as ‘the 18 week
ultrasound’, to the more recent ‘12 week ultrasound’, further blurs intentional
consent as the starkly different clinical aims of each test may not be differentiated
by women (Kenen, 1996; Press & Browner, 1997). This was certainly the case for
Penny, who explained,
Basically, the obstetrician said that this was the standard process – it was just like – you have a 12 week ultrasound – here’s your request form and off you go. [E: Was it presented as something everybody does?] Yes, everybody does it; I assumed he just sent everybody, and you know I guess I just took his word for it…………, I had thought I would only have an 18 week scan , but ….that was obviously not the case. So, I booked the appointment, went to the hospital, and really didn’t know what I was there for so I thought… I better read a brochure, one that was floating about …. Penny
Practitioners too struggled with balancing the tensions between the need to devise
methodical, institution wide processes which ensured appropriate care at the
appropriate time, and the potential undermining effect such routinisation could have
on patients by eroding voluntariness and not providing time to build adequate
understanding. Most practitioners in this cohort articulated some tension between
balancing the logistical demands of seeing multiple patients in a busy clinical
environment with the time-consuming desire to respect voluntariness, support
education and honour informed consent in patients. Additional time pressures
resulting from the unstoppable biological trajectory of pregnancy create further
impetus to act before the medically preferred window to terminate before 20 weeks
passed. Recognising that methodical organisational processes can gather a
momentum of their own, engulfing and undermining the practicing of genuine
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‘choice’ for patients, the comments offered by this GP highlighted the potential
dangers and ‘choicelessness’ that routinisation potentially creates for women.
I think because of the structure of the Shared Care Program54F
55, they really have to have a set thing where there are predetermined tests at certain times so that the obstetricians who are ultimately in charge have all the information they want, so it’s very easy that we as doctors just slot in to that………….so that’s my fear ….that we present it as an obvious thing to want, that we medicalise the whole process. My other fear is that other GP’s out there doing shared care, who themselves have no ethical problem with termination; they will present it as a good idea. I think if it’s presented to us as GP’s and we are really told pretty much that we have to offer them to patients or we are not giving patients freedom of choice, but it’s presented in such a way that ‘of course you would want this test’, and we present it that way, then we don’t really give them a true choice. General Practitioner 2
These sentiments were further reinforced by a midwife, who reflected,
Because it’s offered to everyone, it’s just another step in the routine…so we just do it without really making sure we know what the implications are, we don’t ask all the questions,……… I wonder if that’s how it comes out…..so many people look at the 18 week morphology scan as an opportunity to get a picture of the baby and find out the baby’s sex…………which is of minor medical consequence…its not diagnostic……so its of such small consequence ……yet to many women that’s the big thing………are they taking the 12 week scan the same way without really, really understanding what we’re doing? Midwife 3
While practitioners generally agreed that routine presentation could undermine
voluntariness, some minimised the potentially powerful culmination of social
pressures to conform that routinisation created, holding on to the belief that the
exercising of individual choice was ultimately simple and unencumbered.
Responding to the question of whether routine presentation obscured voluntariness,
the following responses were offered,
Well it [routine testing] could obscure voluntariness …..I suppose that’s possible with anything……it’s offered to every woman but it’s up to them whether they take it or not, so long as they know what it means. …….Midwife 1
55 In Queensland, antenatal care is typically provided in one of three ways.
1. Shared care – in which the woman has most antenatal visits with her GP, returning to the tertiary hospital at 36 weeks for final antenatal visits and delivery.
2. Private obstetrician- after initial referral from a GP, all care, including delivery, is provided by the obstetrician of the woman’s choice.
3. Public care- in which all antenatal appointments take place in the antenatal clinic of a public hospital. In this mode of care, a woman may see multiple physicians during her pregnancy. This option is fully funded by the State and Federal governments.
The approximate distribution between these three modes of care are 35% private obstetrician, 35% shared care, and 29% solely public hospital care (Coory, Rosellli, & Carrol, 2007). There is another option of the Birth Centre in Brisbane. Although this option is flagged as the only publicly funded low intervention birthing service in Queensland, recent policy changes now require all women, regardless of risk status or age, to have ultrasound to assess their risk level prior to acceptance in this midwife-run service.
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Possibly, however…yes, I think it does. They don’t have to have any tests. Genetic Counsellor 1
Just as institutional logistics contribute to routinisation, patients’ demands and
expectations have also been found to contribute to shaping the dynamic of routine
screening with several studies confirming that women want such intervention
(Harris et al., 2004; Stephens, Montefalcon, & Lane, 2000; Whynes, 2002). In
conforming to the social norms of responsible pregnant behaviour, another GP cited
patient expectation as a real driving force in how such routine protocols evolve, I think there can tend to be a routinisation of things, whatever they are…….there’s also an expectation that certain tests are available would be offered and a number of people may think that if they weren’t offered, and then there would be something wrong. Of course what’s in their mind is that it’s a routine test, at that point, while there’s little doubt that whatever you say they will go and have it done, you could discuss why they’re having it done, that may have been explained or may not. General Practitioner 3 I don’t know who is driving it ……obviously consumers want it…..Genetic Counsellor 1
Such ‘consumer demand’ was evident in Leanne’s account, when she explained,
I told her I would have it done. And she was like ……….she wasn’t going to put me off because she could see I was quite strong about it. Leanne
Although Penny, Terri and Danielle passively conformed to the routine of screening
initially, when further diagnostic testing was indicated, they forcefully declined,
resisting clear directives from their various doctors to accept the next step in the
pathway, illustrating that indeed, mothers ‘don’t have to have any tests’. However,
their physicians’ reactions to their rejection, including paternalistic reactions of
rebuke and reproach, created distress and anger for these women which significantly
soured their ongoing relationship with their carers. While several practitioners of
this cohort defended their belief that no person ‘had to’ test, routinisation coupled
with admonishment for not complying may indeed create powerful pressure to
conform. As Stapleton and Kirkham (2002, p.639) have observed, institutional
structures and selective information can be massaged to encourage patients to make
the ‘right’ choice, rather than the ‘informed’ choice.
In assessing the impact of routinisation on voluntariness, comparable studies in the
Netherlands provide valuable insights into the effect such routinisation has on the
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uptake of prenatal testing. As a country which prohibits all routine screening that
may pose a psychological or physical health threat to the person being screened (van
den Berg et al., 2005), the routine offer of prenatal screening is prohibited by law in
Holland. Van den Berg et al (ibid, p.84) explain:
‘One of the categories of the population screening that requires ministerial
approval is screening for ‘serious disorders that can be neither treated nor
prevented’. Prenatal screening for congenital disorders comes under this
category, since the legislature considers termination of pregnancy as neither
treatment nor prevention (Health Council of the Netherlands: Committee on
Population Screening Act, 1996). Since there is no approval for this type of
screening in the Netherlands, it is forbidden to offer prenatal screening to
women unless they request it.’
Under the rubric of non-routine screening, uptake rates in the Netherlands have been
reported at 46% (ibid), under half that of the rates of up to 99% acceptance recorded
in situations where routinisation is entrenched (Spencer et al., 2003; Thornton,
Hewison, Lilford, & Vail, 1995). Such figures suggest that uptake may be largely
dependent on how a test is offered, and may not necessarily indicate intentional or
informed choice by the participant. Attempts to conflate high participation rates with
ethical acceptability such as those made by Whynes (2002) or Cuckle (2001, p.85)
who suggests that high uptake indicates ‘no conflict’ must therefore be challenged.
While routinisation is unproblematically accepted, advocates of routinisation such as
Whynes (2002, p.11) conclude ‘such a trade off between a large number of
reassured, negatively tested subjects against the small number of distressed
positively tested subjects is endemic to all screening programs and not only
scanning in pregnancy’. Interestingly, Whynes (ibid) notes that no participants
questioned the purpose or safety of ultrasound, presuming it to be safe, although
only one in ten women described themselves as ‘informed’. Perhaps as van den
Berg (2005), Kowalcek (2002) and Lippman (1991) postulate, the reassurance
women report may simply be relief from the stress generated by the test itself.
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While routinisation may contribute to inhibiting informed consent, some researchers
advocate for more tests to be offered routinely as a means of strengthening and
supporting informed consent (Dormandy et al., 2002a), with Levi (2002) further
cautioning that lack of routine access may restrict diagnosis of serious
malformations and thus deny access to the choice of a desired abortion (Levi, 2002).
These authors suggest that not routinely offering screening creates additional
practical barriers and therefore undermines the practical exercising of autonomy.
Dormandy et al (2002a) observed that double the number of women accepted
routine nuchal translucency scanning when offered as part of a battery of other
routine tests such as routine blood tests55F
56. They further concluded that women
undergoing screening on the same day visit had higher levels of knowledge56F
57 and
more positive attitudes than their ‘separate visit’ counterparts claiming,
‘conducting screening as a part of a routine visit, compared to screening
that requires a separate visit, seems to maximise informed choice to undergo
the test without impairing informed choice to decline’ (Dormandy, Hooper,
Michie, & Marteau, 2002b, p. 113 ).
These findings speak to the important impact that practical accessibility has on
influencing women’s behaviour, however, critical details of the difference in how
these tests were offered at each hospital or the impact of the non-standardised
information used are not disclosed in this paper. The further ethical distinction
between choice and informed choice are also not fully explored. Particular
contextual and institutional factors, such as the attitude of the nursing staff, the
perceived time pressures, potential bias in the information imparted, or different
ways of administering the tests, all of which have significant influence on the
outcomes, are also not fully divulged. Hence, the conclusions drawn in this paper
may not be as obvious as suggested and certainly require further exploration before
such claims can be confidently made.
56 Figures dropped from 41% acceptance to 21% when a separate visit was required to take up the offer of screening (Dormandy et al, 2001, p.109). 57 There are functional cognitive reasons explaining the apparently higher knowledge levels assessed immediately after information is given which do not necessarily indicate higher levels of understanding and these will be more fully considered in Chapter Nine.
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While reducing physical barriers may facilitate informed choice for some women,
for others routinisation potentially denies the opportunity to explore, assimilate, and
reflect upon the information given. Indeed, the offer to be tested immediately may
be experienced as coercive in that the perceived time pressure could be interpreted
as a strong recommendation to participate, creating a sense that women may ‘miss
out’ if they decline the offer here and now. This situation is described by one GP.
I think if they make a decision quickly they’ll tend to go for the test, so they’ll decide not to
miss out, they have it done and think about it later, but they don’t want to miss that
opportunity and regret that later…and then they’re on the treadmill. General Practitioner 2
While removing the ‘practical barriers’ may increase immediate uptake it may deny
a patient the opportunity to seek alternative information from different sources.
Within the scope of the studies completed (Dormandy et al., 2002a; Marteau,
Dormandy, & Michie, 2001; Michie et al., 2002; Michie, Dormandy, & Marteau,
2003) the reasons why women chose not to return for follow-up screening were not
pursued and attitudes after the initial consultation were not re-assessed. Perhaps as
Santhalahti et al (1998) suggest, the reason many women decline is not because they
have a philosophical objection or a practical barrier, but rather screening is not the
priority practitioners often assume it should be, a point re-iterated by Liamputtong
(2003, p.101) who observed, ‘women’s subjective perceptions may be divergent
from those of health care professionals’.
In conclusion, the benefits of routinisation are that administratively, routine
protocols ensure that medically valued tests are methodically carried out at the
clinically appropriate time. Additionally, for some women the practical barriers of
undergoing the test are removed by routinisation. However, these potential gains
appear to occur at the expense of a fundamental condition of informed consent
which is time to absorb and reflect upon the information given with time to develop
a sound understanding of the implications and outcomes of the processes consented
to. In the case of assessing the health of an unborn child with the potential view to
terminate a pregnancy, the potentially wide ranging ethical implications arguably
warrant fuller consideration than those afforded by routinisation. Without
accompanying ‘routine’ education to ensure that adequately informed decisions are
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reached, routinisation coupled with the expectation of compliance remains ethically
problematic.
Equally, however, while much of the research evidence suggests that many women
participate in a routine and inadequately informed way, this does not automatically
infer that they have been coerced or acted upon against their wishes. Nor does it
automatically follow that their autonomy has been violated as many competent
autonomous adults choose to defer to the medical ‘experts’ (Schneider 1996).
However, we can infer that without access to appropriate education, the outcome of
routinisation appears to have been a weakening of intentional and voluntary consent
for many women, as recognised by many practitioners in this cohort and evident in
the accounts of five of the seven mothers of this cohort.
Institutional Barriers to Education: Blurred Accountability for Informing
While the offer of screening is an established and accepted part of the antenatal
routine, the accompanying education required to inform patients about the purpose
and potential outcomes for this cohort of mothers often seemed ad hoc and chiefly
dependent on the personal commitment and knowledge levels of individual
practitioners. The technical aspects of testing are institutionally embedded, while the
preliminary educational aspects are left ostensibly to the discretion of individual
practitioners and largely dependent upon their own level of knowledge. All health
care professionals interviewed in this study articulated a strong commitment to the
ideals of informed consent supporting its aims and intentions, with many
demonstrating sound educational strategies such as providing individualised written
information or asking patients to paraphrase back their understandings to support
their decisions. However, a significant finding from this research is that confusion
and lack of accountability surrounding where, how, and who was responsible for
informing patients created a significant gap in the ‘informed’ consent processes.
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A consequence of the Shared Care57F
58 structure of antenatal care in Queensland is that
most women move between various health professionals for different parts of their
care. Typically, a woman will see a GP, an obstetrician, perhaps multiple midwives,
a sonographer and possibly a genetic counsellor if indicated. This
compartmentalised delivery of care creates a situation in which each practitioner
may reasonably presume that another practitioner has taken responsibility for
informing. This is evidenced by the following comments,
[E: Who is responsible for patient education?] The first contact person the patient sees for that pregnancy… Obstetrician. Basically if they are going through a private obstetrician, in my mind it’s up to them to talk to their obstetrician about that………so I might say…. you need to book with your obstetrician before 10 weeks to give you time to discuss it and decide ( about testing)….. General Practitioner 2. Probably the scanning department…..they could say, ‘well, you’ve presented here for a scan today, what do you think we are going to find or what do you hope we find?’…Midwife 2.
Well what sort of education……..we have our antenatal classes, but for prenatal screening….I don’t know that anyone is responsible…..I think we are relying on the GP’s to act ethically and responsibly and if they are going to order the test then they need to make sure they know what they are doing. Midwife 3.
They all see the genetic counsellor beforehand and if the result is out of range they will see her again…….but I think she sees everyone having a nuchal……yes………and this is where she tells them about false positives and false negatives……she does see everyone. Midwife 1.
The genetic counsellor referred to above subsequently explained that she did not in
fact see everyone. In a hospital in which all women regardless of risk status were
offered nuchal translucency screening, in which approximately 100 babies were born
each week, she was able to counsel only between 10 and 20 women. She explained It is quite disjointed…..there’s no set process……it does feel a bit haphazard… … [E: How many women do you counsel for Nuchal Translucency?] Very, very small……. In an average week I would see 10-15 women, 20 at most……….very, very small, very small. Everywhere has different processes and protocols………every GP has different processes and protocols too……..so that inequity depends on where you go as to what you’re offered…it’s clearly not a fair or just way to go…. but at the end of the day it’s up to GP’s, obstetrician, genetic counsellor, I guess whoever the patient presents to………I guess …antenatal clinic...but it is haphazard……mmmm………..for sure. Genetic Counsellor 2.
58 See footnote 55. p.159.
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For mothers trying to access the relevant knowledge, the lack of information
proactively offered proved to be a further barrier to the consent process as Mary
explained, Information on that wasn’t readily available [on amnio] either which made it harder. [E: Where did you find the information you wanted?] I rang the specialist and asked them to send it to me. [E: Are you saying it wasn’t offered…you had to request it?] No…. it wasn’t offered……..They sent me a two page list; there was spina bifida, all these different ones….. I’d never even heard of most of them…they said because you have this result it’s pretty likely you’re going to have one of these……….there was a two page list of them…Mary (birthed a healthy baby boy).
Mary’s experience highlighted further lapses in the communication and education
process, where disjointed information was divulged in a fragmented fashion by
various practitioners,
We got there for the scan and got given some paperwork that said they would scan the baby… on the day……The person who did the scan explained what they were looking for……they took a detailed history of how old, how many pregnancies and so on……………that happened 5 minutes before the scan………. [E: Was there any discussion about false positives, false negatives, and possible next step after a bad result?] No….no …nothing………………..they said we’re looking for a result of 1:60058F
59 if it’s over that you’re fine…………….if not we’ll look at other options……..and then they did it [E: What did you understand those other options to be?] Well she didn’t talk about that because she was just doing the ultrasound. Mary
Later describing herself as ‘not even remotely prepared’ Mary’s concluding remarks
reaffirm how her lack of knowledge contributed to the intense emotional anguish she
subsequently experienced.
I think a lot of people just aren’t aware of what can and can’t happen with these tests…..and I honestly think there needs to be a lot more information out there for the public…..well and truly……………..Information that can tell you,………OK, we do this test, this is what its for…… because I had no idea……………and there was no-one for me to talk to …… Who do you talk to ….there’s no 1300 number to ring………….what are my options? What do I do? I think that needs to be available……….I was a basket case………….I just sat in my
59 In the risk discourse of pregnancy, anecdotal stories of risk ‘slippage’ are common. Although elevated risk used to be considered as over 35 years old or above 1:350 from blood tests or Nuchal, frequently women report being categorised as ‘high’ risk at 31, as Danielle was, or with a Nuchal age adjusted risk of 1:500 as Terri was.
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room and cried…………….its not good feeling that way when you’re pregnant……….being on sedatives because you’re so worked up you can’t sleep with worry……………so yeah………Mary
Other mothers similarly described poor educational opportunities with their
practitioners and their turn to the internet to clarify and assuage their concerns.
Accordingly, most of the mothers in this cohort described themselves as ‘self
educated’ about the details of testing. While self education is not necessarily a bad
thing, the turn to the internet perhaps indicates a gap in communication with those
practitioners best placed to help or interpret the overwhelming and often
contradictory information available on the internet.
Communication – Commitments and Barriers
‘Strangers taking care of strangers can come to be as pathological a
factor in certain situations as sepsis’ (Wear, 1998, p.95).
As previously outlined in this thesis, dialogue and communication lie at the ethical
core of the intersubjective encounters between human beings. The ability of patients
and physicians to communicate effectively is therefore an essential element of
medical care, as it is through these dialogical encounters that mutual appreciation
and understanding may emerge. Consequently, barriers to effective communication
contribute significantly to the ethical failures observed both in the existing literature
and for individual members of this research cohort. Within organisational care,
power dynamics, organisational hierarchies, time pressures, financial pressures,
under resourcing, and inadequate support and training of staff, are recognised as
converging to undermine successful communication (Leithner et al., 2006; Stewart,
2001a; Stewart et al., 1999).
Research into communication patterns between health carers and patients
predominantly paints a bleak picture (Bub, 2004; Leithner et al., 2006; Leithner,
Fischer-Kern, Hilger, Loffler-Stastka, & Ponocny-Seilger, 2004). For example, in
Leithner et al’s (2006) study gauging pregnant women’s assessment of attitudes,
information, and communication styles of their physicians, only 22% felt ‘satisfied’
with physician attitudes, with a high 46% reporting strong dissatisfaction. Almost
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30% of respondents cited lack of time as a factor in the paucity of information
received leading Leithner et al (ibid) to conclude that women in their study generally
experienced a ‘striking lack of communication competence in nurses and physicians’
(Leithner et al., 2006, p.936).
Poor physician/patient communication was experienced by many mothers in this
cohort who noted a similar lack of information, emerging from a ‘don’t ask, don’t
tell’ dynamic of communication that left them ill prepared for sequelae of testing.
Penny summarised,
I think there is a level of, if they don’t ask, they mustn’t really want to know….but at the time I didn’t really know what I needed to ask…does that make sense… Penny
This experience was reiterated by Terri, who identified lack of time and poor
communication as significant factors in her negative experience, I did ask questions and they were answered very directly, maybe I just didn’t ask the right questions? I certainly mustn’t have with regards to the tests that I had, at the same time I did say that my cousin’s child had this, and I was concerned about that, so they sent me off for those tests. Now I would say there was a definite lapse in communication. I do think the communication issues are a bit of a problem there. It’s hard to say, I think it comes down to the speed of service, they are seeing so many women, and they don’t have the time. Terri
As Terri hints, her revelation that she harboured some concern may have prompted
her doctors to act in the way they did, highlighting the patient’s contribution to
shaping the quality and dynamics of the dialogues experienced (Post, Cegala, &
Miser, 2002). Patient input was frequently cited by practitioners as a significant
factor shaping how each consultation unfolded. The attitudes, openness, and
intellectual capacity of patients were frequently raised by practitioners when
explaining the poor communication patterns noted, as the Obstetrician explained, I think we modify our consent discussions to include what we perceive the patient will understand…that’s certainly one of the issues; you tell the patient what you think they can understand, so you probably will tell an educated patient more than a lower educated patient. Obstetrician
Although Mei-The et al (2000) were assessing communication patterns between
cancer patients and their doctors when they noted ‘patients had more influence on
what was and was not said in the consultation than might be expected’ (Mei-The,
Hak, Koeter, & van der Wal, 2000, p.1379), physicians in this cohort generally
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expressed that patient influence in poor communication was also prevalent in the
prenatal encounter. Mei-The et al (ibid, p.1381) concluded that
‘breaking the cycle of collusion between patient and doctor is not necessarily
a question of whether the patient has to be informed at all, which usually is
the case, but rather how doctors and patients deal with these facts in
practice. Awareness cannot be forced on the patient’.
Similarly, Post et al (2002) acknowledge the interdependent and dynamic nature of
communication, noting the active role that patients played in shaping the quality of
the informing process experienced. Several practitioners strongly rejected the
presumption that poor clinical communication stemmed solely from the practitioner
half of the communication dyad, acknowledging shared accountability with their
patients. Well, communication is a huge problem…a big problem……and this is where you wonder how much people actually do understand, have a full understanding…medical jargon…it’s always been a problem and I think it always will be…..I guess the thing is you need to ask them what they know and what they’ve understood……and they will say ‘yes, yes I know’, but then you ask them to paraphrase back what they’ve been told and they look at you blankly or they have it all mixed up…..or they really don t understand. Midwife 1 Girls go along to the doctor, first time they’ve ever met this guy, female, whatever, to find out they’re pregnant, no rapport, no nothing…………and yet, you’re supposed to believe whatever this person tells you ……………..and I might say from both sides of the fence…..I might tell you…..patients can lie as well as any other person…..or don’t tell you the whole truth or give you the whole picture…... Midwife 2. The problem is that they don’t understand the dynamics of testing …there’s the grey zone… there are the absolutes but there is a huge grey zone that may create more anxiety than anything else……that’s when I think they are not really aware enough….. Then again, their level of education affects that as well……..not everyone has the capacity to understand why something can or can’t show you something….Obstetrician
Further comments alluded to the difficulty some practitioners had in determining
what information was relevant. The desire to collude in protecting patients from
unnecessary anxiety, while still making sure all medically relevant tests were
performed, prompted the following comments:
I don’t know that it’s a breakdown [in communication] , its just that a lot of information is not given because it feels extraneous at the time, like it’s an extra burden, and with a very low chance of it happening why would you talk about all the potential possibilities…unless you’re dealing with the reality of what’s there…I think it’s just time, economics and
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emotional burden… why would you worry someone about something that’s highly unlikely. You do need to advise that there is a small risk that something unlikely could be found, but you wouldn’t go into detail about all the possibilities. It’s economics I think……… time and emotional burden. Genetic Counsellor 1 I think the barriers are a couple of things, as soon as a woman finds out they are pregnant, their level of anxiety is higher anyway, and they always do tend to worry about their baby. People are worried about exacerbating this anxiety by mentioning the possibility of an abnormality, so we don’t actually tell people, well, your risk of miscarriage in the first 8 weeks is 15%, between 12-20 weeks it this much and so on… the chance of stillbirth after 20 weeks is 1 % and so on ….. You don’t tell women those things……..and likewise mentioning anything about abnormalities, you don’t particularly mention to people that well…..5% of all babies can be born with something because you don’t want them to worry. So, that’s one of the barriers, not to worry the pregnant woman so much and so that effects how much you actually talk about, so you kind of order these tests and they know it’s kind of that they may be looking for a problem, but they are not truly informed about exactly what it is that is being looked for and how accurate it is and what we can and can’t pick up……so I think that’s one of the biggest problems…. Obstetrician.
While the motivations of these practitioners are clearly well intentioned, their
executive decision to exclude patients from a collaborative negotiation on what
information may be relevant occurred mostly without reflection, entrenching
Edwards, Elwyn, & Mulley (2002, p.827) observation that ‘information is
communicated only from the clinician to the patient, and that the acceptability is
communicated back’. However, Edwards et al (ibid) continue, proposing that a ‘two
way exchange about information and opinion is important if decisions are to reflect
the attitudes to risk of the people who will live with the outcomes’. This well-
established research suggests that the discernment of what knowledge is pertinent to
the patient is not uncovered, further entrenching the asymmetrical power dynamic, a
status quo that stifles authentic reflection and dialogue between patient and
practitioner, and which undermines patient-centred care. Practitioners of this cohort
further noted that information is often given in a time of crisis; hence, the ways in
which it is received and assimilated may be distorted by the emotional anguish of
the circumstances. I guess the big barrier [to effective communication] is that, it’s a crisis, you know it’s emotional turmoil and you’re trying to understand information when the rug has just been pulled out from you, and you know it’s important information, but ……… you’re emotionally not very well equipped to handle it at that stage. Having said that, it’s amazing how much people do understand and learn, and you know …..come to grips with what they need to know in a crisis. I guess I’ m conscious of the fact that ……often people are not …………. in the best position to absorb a lot of detail, or information, so I actually think it’s a mistake to try and burden them with resources and handouts and things like that. We shouldn’t have that expectation of them that they should take in a lot of new knowledge at that point in time. Clinical Geneticist
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Often the information comes as a shock so they can’t really deal with it - they don’t understand too much unless it’s a lethal condition and the baby, it’s just a matter of time before the baby will die, they tend to understand, like black and white. The subtleties are often lost. Genetic Counsellor 1
Illustrating the ability to focus and give attention as a critical precursor for learning
(Woods & Barrow, 1975)59F
60, Danielle described a scenario in which her emotional
distress, coupled with the distraction of her other children running around the room,
created a lack of attention that limited and distorted her understandings, resulting in
a poor educational outcome. I couldn’t have possibly understood the things she said to me….to the point where we would get home and [husband] would say, [the doctor] said this and I would have completely forgotten that ………..he was focussing on the facts and I was in a head spin…………..I mean she’s a good doctor, but I think she should have rung and said I don’t want to alarm you but…..I need to speak with you and your husband on your own ……because we brought the kids with us and so with the other two running around the room….that was a huge distraction…………..that I think perhaps…………they tread a fine line……..should they ring you up and make an appointment …..and start you worrying from that second?………..if she ever asked my opinion, I would suggest that if she dealt with couples in that circumstance again that she maybe do it differently. Danielle
While it is improbable that any person could ever be fully prepared for all
eventualities, as the sole purpose of prenatal screening is to uncover problems, it is
predictable that problems will be found in some cases. Therefore, this possibility
should be pre-figured in women’s minds prior to testing, to foster some awareness
that may lay the groundwork of preparedness for those who experience an
unwelcome result. The question of whether the poor preparedness for potentially
bad news intensifies the trauma experienced when the unwanted and unexpected
‘bad’ result does eventuate is not the focus of this study. However, given that robust
informed consent has been frequently associated with enhanced patient acceptance
of good and bad outcomes, more research is warranted in this area of antenatal care.
Overt and Covert Counselling
While the nature of patient/doctor, or patient/counsellor, interaction in prenatal
screening is often idealised as being non coercive, non-directive, and respectful of
the patient’s free choice (Anderson, 1999; Fineman & Walton, 2000; Williams,
Alderson, & Farsides, 2002b), the potential to exert influence in medical decision 60 Aspects of learning, including factors which impinge on attention, will be more fully discussed in Chapter 8.
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making is widely recognised by health professionals who acknowledge the
difficulties in maintaining a neutral, unbiased approach (Williams, Alderson, &
Farsides, 2002a, 2002d). For many women the mere offer of a test will be viewed as
a tacit recommendation (Press & Browner, 1997; Williams et al., 2002c), while the
presentation of a diagnosis predefined as undesirable (Kenen, 1999), and couched in
the negative language of burden and risk, may encode a subtle inference about the
(un)desirability of the child in question. Coupled with routinisation, clear directives
about expected behaviour are felt by women. Indeed, nearly 70% obstetricians
interviewed in Marteau’s 1994 study admitted to directively counselling couples to
terminate affected foetuses (Marteau, 1994 cited by Shakespeare, 1998, p.668)
reflecting deeply entrenched social and institutional biases, biases that Hubbard
(1988, p.232) suggests create a situation in which individual women implement
society’s prejudices ‘so to speak, by choice’.
The following practitioners’ comments elucidate some of the issues associated with
trying to dispense unbiased, value-neutral advice in a non-directive way. Walking
the fine line between providing the professional advice and expertise patients
sought, while remaining cognisant and respectful of the patient’s input and wishes
proved a difficult task for some.
I try very hard to be non-directive ….I do……..I think it’s possible… Genetic Counsellor 2. I guess it’s just how you present it ………….. …with older women………here we go again presenting subjective stuff…….for you at this stage you have a higher risk but it’s up to you to decide what ‘high’ risk means to you, what risk you are willing to take…….but according to the information we have here it is worth you having the test at your age because you are at increased risk.……Midwife 3 I think if its presented to us as GP’s and we are really told pretty much that we have to offer them to patients or we are not giving patients freedom of choice, but it’s presented in such a way that ‘of course you would want this test’, and we present it that way, then we don’t really give them a true choice. General Practitioner 2 Essentially it’s as non-directive as we can make it, we give people options of further testing and tell them the available information we have, what we can exclude with certain tests, then we give them the choice…….no-one is obliged to do anything……even if we have an abnormal result…..no-one is obliged to act upon that result if they don’t want to…however, directive counselling?......it depends who the patient talks to really, some people will push a lot more for things than others…….Obstetrician.
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However, in line with Schneider’s (1996) observations, physicians also recognised
that many patients did indeed seek overt direction, coming to them for interpretation
and elucidation of the overwhelming quantity of information that is accessible from
various sources, most notably the internet. The following practitioners explained,
I don’t think it’s hard at all, in one sense it’s easy to be non-directive, but it’s not a particularly good way to go in medical practice because it’s too much like a shopping mall model, and doctors should be in the business of, not coercing people, but offering some gentle direction on some cases, or at least endorsing what they feel is the best way to proceed in that patients best interest. …..most people would agree that it’s not that difficult, but people get into habits, and may not be aware that they are being directive. General Practitioner 3 It’s not lack of information that people have a problem with these days… With the internet, there is too much information, so it’s about sifting, interpreting and understanding which is the communication process that takes place in the clinical consultation. So….. Why do people keep coming with more information? …… it’s because they need assistance in understanding and interpreting, so I try not to give too much and expect them to take it all away and read it all and act upon it. Clinical Geneticist [Is non-directiveness a valuable aim?] No,…..no,….well…….I don’t think it is because I think the internet is non-directive counselling, …………and I think people come to us for information, but they also come to us for our professional advice…so while I don’t think that we should tell people what they should do…….and that’s what used to happen…..although in previous generation that’s what some people wanted too…but no…. I think people come more for advice….they do have to make their own decision but they do want an opinion from you. And I guess………..the other thing with non-directive counselling is…….to be totally non-directive you wouldn’t even bring up the fact that there was a test because that’s being directive in itself by offering it ……..we’ve already…...pre-empted it…. ….but I think to be totally non-directive you just end up giving people this whole lot of information and they’re just going to say, ‘well I don’t understand that’ ….because I think they can’t necessarily think through all that unless perhaps they know someone who has been through it. So, I don’t think that [non- directiveness] is what people want from us to be honest………General Practitioner 2
While advice may be sought by mothers, problems arose for some when they chose
to reject it, as Danielle did when she decided not to accept the offer of amniocentesis
after soft markers were identified on ultrasound.
Well the doctors at the hospital almost worded it like I was being a petulant mother, the way mothers talk to petulant children……well, that’s the decision you’ve made, and we respect your decision, but you know that’s a choice that you’ve made now and you have to live with that….it’s like we’ve given you this option and you’ve decided not to take it………so it was like I had to say “yes I HAVE decided not to take that option”……they didn’t actually say the words ‘its all your problem now sweetheart” , but that was the attitude. Danielle.
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As the mother of a child with Down syndrome, Elizabeth too encountered blatant
presumptions about what her expected course of action should be during her
subsequent pregnancy. She explains
I was 34 with Rebecca when I first went to the GP, and said I was pregnant again, I had Grace with me, and they had written a few notes down, and I said Grace had a heart defect and she was born with Down syndrome. He immediately started telling me I would be referred for a fetal cardiac scan, he said “I want this test, and we need to do a blood test”, and I said, ‘no I’m happy not to have that, they’re not that accurate and I don’t want it. I said to him, we knew about Grace before she was born, so that negates all that discussion, He basically just looked at me and said, ‘well I suppose you know what you are doing then’. Elizabeth
Having rejected the offer of a nuchal screen, Elizabeth was further confronted with
the persistent presumption of the sonographer, When I had the 12 week scan, the lady asked was I having a nuchal fold scan, we had Grace with us, and I said “no, I’m not interested”. But she went and had a look anyway and said, “It looks OK”. I was shocked, because I thought; you didn’t have my permission to do that. That’s not acceptable, but I decided not to make a scene. Elizabeth
For Penny and her husband, the directive and adversarial nature of their encounter,
and the pressure they sensed when deciding to decline the offer of further testing
caused distress and anger, They said ‘well, really you have to have an amnio’, and Stuart and I had talked about that previously and we had had a miscarriage three years earlier, and were told that our chances of falling pregnant again because of other issues between us were very low, so we said, even if there is a problem, we wouldn’t do anything about it…..So we’re sitting there looking at each other , thinking we’re not going to do anything about it and they’re sitting looking at us saying, “Well, you really should have the amnio and that will tell you more definitively if there’s a problem” . And it was like we really had to stand our ground, to say no….. We’ve already thought about this ….and we don’t want it… [Later in the interview]……….I think it just meant that for us we just tended to dig our heels in …..rather than be pressured…..it wasn’t that we had more questions, we just said no…..no discussion…no matter what you say….we didn’t need more education or information at that stage, we just said no…… we’re not doing it…. We both just really stuck by that original reaction…but we were more angry at the sonographer and doctor pressuring us…that we were somehow making the wrong decision and weren’t complying with what they thought the ‘right’ decision was…that made us more angry …..So we never really revisited whether we should have had the amnio………they did mention that they could put us in touch with a geneticist…..And when we refused to have the test they still offered us the opportunity to speak to a geneticist, so almost, it was like - they will convince you that you need to have an amnio, but in a very pleasant way…. They were saying well, you need to talk to a geneticist, and we said well, we’re not going to do anything, so what difference does it make? And we refused to do that as well. Penny
Like the women in Stapleton’s (2002) study, many of the mothers in this cohort
rarely asked questions in deference to their doctor’s superior knowledge and obvious
time constraints, while hierarchal power structures within the medical administration
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were found to influence the array of options presented (Anderson, 1999; Bernhardt
et al., 1998; Stapleton et al., 2002; Williams et al., 2002c). In investigating this
concern Bernhardt et al (1998) found that most women she surveyed (75%) felt ‘the
right amount’ of time had been devoted to dialogue concerning the purpose and
nature of testing (Bernhardt et al., 1998), although most conversations focused only
on the physical and administrative practicalities of the test. The possible outcome of
termination or descriptions of the disorders being screened for occurred in a
minority of cases while debate of any emotional, social or ethical aspects of
screening were neglected (Bernhardt et al., 1998; Press & Browner, 1993;
Santhalahti, 1999). The failure to regard these ‘non technical’ issues as worthy of
discussion may further undermine their relevance, sending a cue about their
perceived worth that may indirectly silence ethical discussion. This further
highlights the problem with a process in which the information that is deemed to be
ethically relevant is determined by others, often without consultation or regard for
individual patient values. However, it is important to note that practitioners too are
subject to overt directives, directives that shape the normative pathways that are
ultimately laid out for women. One general practitioner explained:
They held an information session for GP’s on a range of antenatal issues and obviously that was one, part of it was to do a big plug for the new screening….it was certainly presented with a great deal of excitement and ……you know , they were very pleased to have it (nuchal translucency) available and really, certainly from the fellow who had set it up ( at the hospital), he really expected that everyone would want the test and we needed to tell everyone that it was available. General Practitioner 2
In the face of these powerful professional expectations, which are often couched in
the language of legal obligation, acknowledging the overt and covert pressure on
practitioners to promote screening forms an important part of the dynamic observed.
Legal Frameworks: Practice and Policy Consequences
A further institutional consideration shaping technology use and directing ‘choice’
with regard to what testing is offered and why, is the legal framework under which
health care institutions operate. While there may be nothing legally contentious
about a woman giving her informed consent to have her foetus screened prenatally,
should she choose to undergo a termination in response to what those tests reveal,
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her actions, and those of her doctors’ fall under the Criminal Code in Queensland.
While termination of pregnancy is unlawful in most states of Australia, lawful
‘therapeutic’ termination can be procured on the grounds of threats to the physical or
psychological health of the mother60F
61. The presumption that a disability in the foetus
is automatically grounds for psychological distress in the mother is firmly
entrenched in clinical practice and in various state laws within Australia. However,
the nature or severity of any foetal anomaly rarely demands justification, and
termination is essentially freely available in all states including Queensland.
As there is no evidentiary requirement to substantiate any claim of psychological
distress, termination of a 20 week foetus with a cleft palate, or a 32 week foetus with
suspected achondroplasia 61F
62 (de Crispegny & Savulescu, 2004) is legally defensible
on the grounds that it creates emotional anguish in the mother. Through focusing on
the mental distress the presence of a disability may create in the mother, the law puts
women in the unenviable situation where they must build a legal case for
termination, based on their own mental fragility. The compounding affront of having
conceived a substandard child, followed by the necessity to build a legal case for
termination based on one’s own mental incapacity inhumanely places mothers at the
epicentre of this series of accumulating ‘failures’. This situation also places
practitioners in the unenviable position of procuring treatment in their patients’
interests while potentially placing themselves in breach of the law, a law which
increasingly is out of alignment with actual practice.
Further studies suggest that fear of potential litigation rather than genuine patient
need may be contributing to strong recommendations to screen given by many
doctors (Manson, 2007; Anderson, 1999; Press & Browner, 1997; Stapleton et al.,
2002; Williams et al., 2002b), and may represent a form of reassurance sought by
medical staff, mindful of avoiding possible lawsuits (Williams et al., 2002c) .
Indeed, the ‘legal grey area of malpractice for not offering tests’ has been identified
as a factor in the increasing numbers of women being offered the MSAFP blood test
in Canada (Press & Browner, 1997, p.980). With fear of litigation looming, a
61 Under Section 282 of the Criminal Code of Queensland. 62 This termination occurred in Melbourne, Victoria in 2000, and is discussed in an article by de Crispegny and Savulescu, 2004.
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mutually reinforcing bond of dependence between specialist and patient is fostered
which may effectively stifle full participation of the patient in moral decision
making.
In line with the claims made above, many practitioners in this cohort identified the
professional legal consequences of not testing as a motivating factor in the
increasing number of scans both devised and offered as evidenced by the following
comments, I feel….and I think probably the medical defence people would probably say the same; I am negligent if I don’t offer them the test. General Practitioner 2 [E: How much of the pressure to test is driven by the defensive legal position?] That’s 100%...yes…..yes….it is …it is….I think you’ll find more and more the defensive legal side weighs very heavily…..because if the doctor doesn’t offer, then they may be held accountable ………….many, many doctors are sued for that…for not offering…..there’s a lot of defensive medicine happening………..it’s sad to see that it’s gone down that path……….even the Caesar rate, they just jump in and do it at the drop of a hat …once upon a time they would give the woman the benefit of the doubt….it’s all defensive medicine now……….Midwife 1
Finally, this comment from an obstetrician identified wrongful birth lawsuits as the
issue at the heart of the medico-legal drive to screen.
Well, there’s two ways to look at that, there’s the medico-legal …..where…..pretty much…it only takes one or two lawsuits where people say they weren’t offered an amniocentesis when they should have been and they had a baby with Downs, and even although wrongful birth is something that you can’t really sue for, you can in fact sue for it in a way, so there’s definitely medico-legal pressure on GP’s and obstetricians to offer these things. Obstetrician
Perhaps, however, this is an overstated fear. The reality in Australia is that wrongful
life actions have been to date unsuccessful. However, the laws governing
discrimination, wrongful life, and termination, present conflicting messages about
disability, possibly fuelling the confusion and uncertainty practitioners feel.
Recently, two wrongful life claims were rejected in the High Court of Australia on
the grounds that there was no substantive evidence that life with a disability was
worse than the alternative of non-existence62F
63. Such rulings illustrate the paradoxical
nature of laws that reject wrongful life on the grounds that life with disability cannot
be proven to be worse than non-existence while supporting the terminations of
63 Harriton v Stephens. 2006 High Court of Australia 15; 9th May 2006; Waller v James; Waller v Hoolahan. 2006 High Court of Australia 16; 9th May 2006
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foetuses with (sometimes minor or no63F
64) disabilities, including the termination of a
32 week foetus with ‘suspected’ achondroplasia, as mentioned earlier (de Crispegny
& Savulescu, 2004).
A common theme of legal frameworks adopted in many Western countries is that
the foetus has no legal status. The trigger for recognising personal rights in law is
birth. If a foetus is never born it has no rights and cannot be discriminated against,
hence, the prevailing rights are those of the mother. Recent law reform in
Queensland relating to intentional harm of an unborn child adds a further layer of
complexity, conflict and possibly confusion for practitioners. Under this
legislation64F
65, if an assault on a woman prevents the live birth of a child she is
carrying, the perpetrator may receive life imprisonment for the intentional harm of
an unborn child. While these laws governing termination are legally consistent in
holding the foetus as a ‘non-person’ and preserving the individual rights of the
mother, there are real moral inconsistencies in recognising on the one hand that the
killing of an unborn child may constitute harm, while condoning on the other hand
the termination of a 32 week foetus on the grounds of maternal psychological
distress.
The continued placement of termination under the Criminal Code places emphasis
on cementing a defensive legal justification as opposed to one of exploring the
social, moral, and human consequences, without fear of prosecution. Often, the
secrecy that flows from such a defensive legal stance, coupled with privatisation and
individuation it promotes, inhibits open reflection as many of these decisions
become concealed from the public discourse. Practical consequences in policy and
care protocols are seen institutionally, a notable example being the failure to flag the
offer of termination on the Queensland Health Consent to Amniocentesis form65F
66. As
termination rates after an unwelcome diagnosis generally remain above 90% 66F
67, the
prospect of termination is not a remote possibility. However, in response to the
64 While termination remains illegal in most states, ‘over 95% of terminations before 15 weeks are for social reason in which the foetus is normal’ (Aldred et al., 2003, p.337). 65 Section 313 of the Criminal Code of Queensland. 66See http://www.health.qld.gov.au/informedconsent/ConsentForms/obgyn/O&G_01.pdf (Accessed 7th Februrary, 2008). 67 Carothers et al., 1999; J. Egan & A. Borgida, 2002; Erikson, 2001; Ford, 1999; Garne, 2001; Santhalahti, 1999 .
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question of why termination is not flagged as a potential sequel of amniocentesis
this GP explained. Well, that’s because it can’t………….because it’s still a felony…..it does in Victoria and Western Australia, the simple answer is that you can’t refer to something that is illegal, unfortunately we don’t have a Menhennit or Levine67F
68 ruling in this state which is the ability to avoid ………in absolute terms – prosecution….so the amniocentesis consent does draw attention to the fact that there is maternal and foetal risk… but I don’t think that that’s inappropriate……General Practitioner 1
Similarly, one genetic counsellor saw no ethical omission explaining,
I don’t think that it’s an omission because that should have been a prior discussion, as to why is someone having the amnio- it’s a risk procedure….and that the expectation is that should an adverse finding such as a chromosomal abnormality be found, it was for the couple to decide. I don’t think it’s sufficient to have an amnio to learn whether or not the baby has a condition so that you can prepare yourself with that information. E: So you don’t think it’s an omission not to flag termination as a possible outcome on that on the form? No……….. E: Do you think it’s appropriate to assume adequate discussion has taken place prior? Yes… I think it’s too late to have it on the form…it should be done before the decision to have the amnio……..what is the purpose of the amnio for you? E: Do you think for some women if that discussion hadn’t taken place, a written re-enforcement of the possibility of termination could be an extra safety net? No……because why would someone seek an amnio…or information….what was she going to do with that information?
While these practitioners were clearly comfortable with omitting the likelihood of an
offer of termination, another general practitioner felt less at ease:
[E: The Qld Health consent to amniocentesis form doesn’t mention termination as a possible outcome. Do you have any thoughts on that from an informed consent perspective?] I do actually…….I think that’s very bad because ….. the impression that I get is that most doctors that they then talk to, saying they have baby with Down syndrome, would just expect that that’s what they would want do …….we do this test, we get a result and this is how we treat it and make it go away……there’s seems to be unfortunately more and more of that expectation……..when I read the medical newspapers and even articles on pregnancy
68 Common law decisions that most impact in Australia are R v Davidson (1969) VR 667 by Menhenitt J (Supreme Court) and R v Wald (1971) 3, NSW DCR 25 by Levine J (District Court). These cases established that an abortion could be legally performed if the pregnancy would have a detrimental effect on the mother’s mental and physical well-being. The Menhenitt ruling established that both mental and physical health risks are grounds for a lawful termination. (See http://www.childrenbychoice.org.au/ndownloads/CbyCSubtoTaskforce.doc, p.10 – Accessed 5th October, 2007).
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screening I think that seems to be the general trend… I think particularly where termination is the expectation they will be hit with afterwards, they need to have that thought put in their heads beforehand that this will be brought up. I think a lot of people are just getting tests done without thinking it through to the next stage….to not bring up the possibility of termination is not good……..there’s a lot of things other than Down syndrome that get picked up though amniocentesis, I mean even the ultrasound that they do beforehand will often find babies that may not survive, so there’s lots of other things that can be picked up there……I think they need to have that in their mind before the test. General Practitioner 2.
Finally, as the law in Queensland, which regards termination as criminal, and the
practical access to termination, which is essentially unrestricted, are out of step, the
continuing positioning of termination under the Criminal Code has effectively acted
as a barrier to open information flow, creating a situation in which patients and
practitioners must quietly collude. If the purpose of placing termination under the
criminal code was to decrease the number of terminations, there is, as yet, no
evidence to suggest that current legislation in Queensland facilitates this outcome.
On the contrary, the two states in Australia, Western Australia and South Australia
that have removed termination from the criminal statutes report similar or
marginally lower termination rates than Australia generally68F
69 (Straton, Godman,
Gee, & Hu, 2006, p.15). When practice and the law operate out of synchronisation
with each other, further consequences such as lack of adequate data collection, under
resourcing of counselling services and incomplete consent protocols follow,
outcomes which will be further discussed in Chapter Nine.
Chapter Summary
Numerous institutional factors act to constrain the realisation of informed consent in
practice. These factors include the routinisation of screening which blurs the
voluntary nature of participation and may bypass the ethically critical informing
process. In this cohort some practitioners welcomed routinisation and were sceptical
about the extent to which this minimised or obfuscated voluntariness; yet, many
mothers were unaware of their option to opt out. However, the potentially fracturing
69 WA reports 18.2 terminations per 1000 pregnancies compared to 16.7 per 1000 in SA, and an overall estimated figure of 19.7 per 1000 pregnancies within Australia (Grayson, Hargreaves , & Sullivan, 2005, p.xv). Perhaps reflecting the disjoined and incomplete way that data is collected in Queensland, and the lack of mandatory reporting the estimated per capita figures are contradictory, reported as between 15.4 and 17.0 (Grayson et al., 2005, p.32) . The reality is, however, that as no mandatory reporting requirements exist, the numbers and reasons for termination in Queensland and other states remain impossible to quantify accurately (Pratt, Biggs, & Buckmaster, 2004).
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experience of diagnosing disability in a foetus with the potential view to terminate a
pregnancy evokes deep ethical questions. Ultimately these questions must warrant
fuller consideration than those afforded by under-informed and routine practice.
While the goal of non- directive counselling is professionally valued by many
practitioners, the presence of overt and covert counselling was strongly present in
the mother stories, reflecting a normative pathway of intervention, prefigured by the
presumption of participation. A potentially significant finding highlighted by the
accounts offered in this research, and possibly particular to Queensland, is the
blurred accountability for informing as a consequence of the variety of practitioners
that manage each pregnancy. Barriers to communication included practitioner desire
to shield patients from worrisome, but potentially remote, outcomes, while for
patients, their uncritical and unquestioning acceptance perhaps stifled the necessary
dialogue. Additional institutional pressures identified through the participant stories
were those of limited time, limited resources, and the ominous legal threat that
drives the practice of defensive medicine.
The following chapter will consider the social constraints to achieving informed
consent.
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CHAPTER 7
VOICES IN CONTEXT:
SOCIAL CONSTRAINTS
Introduction
Social factors constraining the realisation of informed consent in practice include the
socially constructed, though often unrealised, expectations of enhanced choice,
societal reverence towards science and technology, feelings of blame and culpability
experienced by women and practitioners on the birth of a disabled child, the social
construction of disability as tragedy, and the acceptance of socially sanctioned cost
benefit analysis of screening that promotes the practice as financially responsible.
Each of these factors will be considered in more depth.
The Social Construction of Choice
The belief that prenatal screening automatically enhances reproductive choices by
providing improved knowledge about the foetus, thus enabling more informed
decision-making (Baird, 1999; Cuckle, 2001; Savulescu, 2005), seems actively
embraced by many parents and doctors alike as unproblematic, or even ‘responsible
pregnant behaviour’ (Lippman, 1991, p. 28). While such screening is predominantly
regarded as a technical or medical event, the background considerations directing
our ongoing communal commitment of resources, time, expertise, and funding into
supporting widespread screening programs are fundamentally driven by latent social
determinants. The questions of why the detection and potential elimination of
disability are culturally valued and endorsed are essentially social in nature.
Similarly, the type of prenatal screening practices developed and the increasing
frequency of their use equally reflect entrenched social values as much as they are
evidence of advancing technical capabilities. As it is these often veiled social
attitudes and norms that extensively dictate which choices come to be offered and
sanctioned, exposing these underlying presumptions is valuable in forming an
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ethical appreciation and response to the widespread acceptance and expansion of
prenatal screening regimes.
The high elective termination rates of 85%-98% for foetuses prenatally diagnosed
with some type of physical, chromosomal, or genetic anomaly reflect a strong trend
towards the abortion of affected foetuses (Carothers et al., 1999; Egan & Borgida,
2002; Erikson, 2001; Ford, 1999; Garne, 2001; Santhalahti, 1999), figures which
have been uncritically presented as strong evidence of choice enhancement (Cuckle,
2001). For parents who have been afforded the additional choice to avert the live
birth of a child with a disability, this appears to be the case. However, these same
figures sit uncomfortably with others who interpret them as evidence of narrowed
options and limited choices representing a lack of perceived alternatives in response
to a diagnosis predefined as undesirable (Kenen, 1999; Parens & Asch, 2000;
Shakespeare, 1998), as Regina Kenen notes,
‘Once a pregnant woman is presented with a category of conditions pre-
defined as a defect, the social context narrows her perceived options’
(Kenen, 1999, para 9).
Progress in the field of genetics has further stretched the boundaries and
expectations of ‘choice’, with some academics arguing that if we have the means to
gain genetic health information about our children, we have a ‘parental and moral
obligation’ to acquire it (Clarkeburn, 2000, p.1; Green 1997; Savulescu, 2001,
2005). However, once such knowledge is known, it cannot be unknown, perhaps
creating an impetus to act. Clarkeburn (ibid, p.2) clarifies her interpretation of this
parental obligation:
‘The duty to acquire information about the genetic constitution of the foetus
must be connected with the duty to act upon that information …… In the case
of untreatable and non-preventable genetic defects, the only possible
benefiting action is termination’
Broader (and perhaps more pertinent) questions of who determines the grey areas of
‘non-preventable’, or at what level the ‘untreatable’ becomes ‘unacceptable’ often
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remain curiously unarticulated in such accounts69F
70. These considerations are further
complicated by the considerable lack of agreement within the medical literature on
the definition of what constitutes a disability. Obesity, low intelligence, criminality,
predisposition to cancer or lack of athleticism (Duster, 2003; Rothblatt, 1997) are all
traits with a genetic component that could be considered debilitating by some, but
may not be considered reasonable grounds on which to terminate a foetus or reject
an embryo. The seemingly trivial example of non life threatening genetic dental
conditions cited by Aldred et al (2003) flags such an example. Attention to these
largely cosmetic and fixable conditions may seem like a misplaced vanity in light of
the more contentious eugenic implications of prenatal diagnosis, however, Aldred
(ibid) and his colleagues advocate open access to Pre-implantation Genetic
Diagnosis (PGD) for such conditions, which may cause intense psychological
suffering and social exclusion, concluding with the justification that ‘if a couple will
only have a finite number of children, it might be considered rational for that couple
to choose to have children who start life with the best genetic prospects’ (Aldred et
al., 2003, p.337).
While Aldred and his colleagues present the idea of ‘best genetic prospects’
unproblematically, as though there were some shared understanding of what this
means, adopting such malleable and manipulable definitions of disability further
obscures the criteria for use of prenatal diagnostic technologies, particularly in a
biomedical and social context in which individual choice is seen as valuable, and
medical consumerism can shape the wider community agenda. Not only can we
regulate when and how many children we have, we may now expect to control or
choose the type of child, an expectation endorsed by Leanne who explained,
If I’m going to bring up a child for the next 20 years I’ve got a small amount of control and choice what condition its got……so I just can utilise that [technology]…[later in the interview]…but that (Down syndrome) was one thing I could eliminate after all the things you worry about when you’re pregnant , did I drink too much in the beginning, could it be born with a funny heart…. well at least I know he doesn’t have that… he doesn’t have Downs. Leanne
70 Similar interpretations are offered by others such as Helga Kuhse, Peter Singer and Julian Savulescu – who likewise tackle the relativistic nature of assigning definitions of severe or unacceptable disabling conditions with remote, decontextualised or intellectual justifications.
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As demonstrated earlier, for many of the mothers in this cohort the choice to screen
was initially exercised as the unquestioning and trusting acceptance of the routine
pathway, reinforcing Lippmann’s description (1999) of a pathway clearly paved
long before many realize they are on it. While the notion of individual choice is
culturally valued, and the terms ‘choice’ and ‘autonomy’ are liberally scattered
through the medical discourse relating to prenatal screening (and other forms of
medical intervention), in reality, a person’s ability to exercise truly autonomous
choice is restricted, made for many under non – negotiable constraints. Situated in a
web of entrenched social and institutional cultures, frameworks, practices and
presumptions of which the person themselves may not even be aware, the exercising
of choice is more accurately one of choices from those choices made available, as
Anne describes,
From my experience I haven’t always been made aware of my choices. It makes me angry a bit because I wonder what other areas of the medical procedures, in terms of being pregnant and having a child are we not given a choice about where we actually do have choice. It raises a whole bunch of questions about other things we should have a choice about. Anne
A view further echoed by one GP who noted,
We’re putting them on an escalator, really we’re putting them on at the bottom and they have to follow it to the top…..I don’t believe its ‘voluntary’. We might say well, they don’t have to go on and have the amnio, then having that they don’t have to go on and have a termination, but once you’re there in that emotional response, you’re often in a position of no choice, because your alternative is to go through the whole pregnancy terrified, just terrified and I’ve seen people do that. General Practitioner 2
The largely predetermined nature of choice was further evidenced in Mary’s account
of testing for her third pregnancy after a traumatic and tumultuous experience of
false positive in her second pregnancy 12 months earlier. On being advised to have
another nuchal translucency and blood test, Mary expressed reservations to her
doctor. She relayed the conversation,
I said…‘Do I really have to?’…….because I’d seen the same obstetrician for all my (three) pregnancies he said “Well, we need to because of what happened last time….just to rule anything out” so I went with bated breath. [E: Did you feel that you had choice in that?] No …no……...not really………..no……… I felt like it was “You’ve got to go and do this”…Mary
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In spite of Mary’s ‘harrowing’ experience during her second pregnancy, she
maintained faith in screening and in her physician, her closing comments suggesting
that her perceived lack of choice was not the critical source of her distress. Rather it
was her lack of understanding about the potential outcomes and options that
compounded her distress and bewilderment.
Yes…[screening] definitely does [enhance choice]…………..but I think there needs to be more education about what can happen once you get the result back……………..because I had no idea……………and there was no-one for me to talk to …so yeah…..I did choose …I guess I had a choice with every test I had done….and because I trusted what I was told…I went ahead with it…..so yes and no…I had a choice not to but…….I didn’t at the same time. Mary
Considering the potential, risks of screening such as false positive results from
ultrasounds and blood tests, potential miscarriage from amniocentesis and CVS,
psychological distress (Goel et al., 1998; Kowalcek et al., 2002; Liamputtong &
Watson, 2002; Watson et al., 2003) and lack of decisive outcomes for many, the
reasons why women participate in prenatal testing in such high numbers are
complex and multifaceted. Certainly, routinisation and overt expectations to
conform partially explain the high uptake rates while the presumption of enhanced
reproductive choice may be a motivating factor for some women. However, as
pregnancy progresses naturally for around 97% of women (Baird, 1999; Ford, 1999)
resulting in the birth of a healthy baby with no complication or intervention, the
reality of enhanced choice to either terminate or gather additional knowledge prior
to the birth of a child applies only to the remaining 3%. Tom Shakespeare
comments (2005, p.221),
‘Approximately one in twelve adults is disabled. However, only about 1% or
2% of births are affected by disability: most people become disabled through
disease or accident in later life, particularly in old age. Disability is a
normal fact of life’.
This observation is further reinforced by Baird (1999, p.9) who claims that ‘most
neonatal disabilities result from ‘low birth weight, prematurity, viral or bacterial
infection, birth trauma or accident’ none of which can be predicted by prenatal
screening. However, rather than accepting the reality that disability is indeed a
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normal fact of life, our commitments are channelled into directing extensive
medical expertise and financial resources into identifying this 1%-3% with the
normative outcome of termination. This socially endorsed stance thus reflects, and
perpetuates, an interpretation of disability as so universally unacceptable and
undesirable that the extensive investment channelled into its ‘prevention’ is
unquestionably warranted.
One genetic counsellor explained that, while prenatal screening was not failsafe,
‘consumers’ 70F
71 definitely wanted ‘certainty and desirability…in their offspring’,
continuing to explain, ‘I think people want a healthy baby…because I personally
would’. On the other hand, the obstetrician saw prenatal screening as a simple
extension to tests that could be performed after birth noting,
There are lots of different reasons to chose to have those tests available….because those tests are just an expansion of tests that can be done after a child is born……..I think they offer people choices and they are there because people want those choices … so I don’t think its presence is a judgement statement, it’s simply a way of providing the options that some people want to have …. Obstetrician
The high elective termination rates observed suggests that many people expect, and
are entitled to have, the choice of termination. However, the critical difference, not
articulated in the discourse of choice that surrounds the prenatal testing
conversation, is that it remains unlawful to euthanize a child when diagnosis of a
disabling condition occurs after birth. Thus the imperative to detect any conditions
prior to birth, to prevent the ‘tragedy’ of disability, is created71F
72. Further research
reveals that the period immediately after receiving an unwelcome diagnosis is
frequently characterised by a sense of urgency and impetus to act which further
channels choice (Helm, Miranda, & Ched, 1998), while Shakespeare (1999, p. 30)
concludes in his critique of the rhetoric of choice that,
71 Some (not all) practitioners used business language, describing their patients as ‘clients’ or ‘consumers’. The production models of health care that such language portrays is not the specific focus of this research, however, it prefigures a relationship between the patient and health carer as one of contractual obligation, as opposed to a more appropriate one of covenant and care as advocated by Eric Mount (Mount, 1990). 72 Utilitarian thinkers such as Helga Kuhse, Peter Singer and others see no moral problem in euthanizing handicapped infants after birth, arguing that the trip down the birth canal is not morally significant, thus advocating that the choice to ‘terminate’ be extended into life (see Kuhse & Singer, 1985 for example).
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‘The evidence undermines this rhetoric of free choice………… in hundreds of
small ways the choice is unfree and the dice are loaded against the birth of
disabled children’.
Within these complex subjective and intersubjective webs of relationships and
perceptions, individual choice is rarely simple and may seem illusory and mocking
to some (Bridle, 2004, p.92).
Trust in the Medical System, Science and Technology
Leon Kass (2002, p.33) defines technology as follows,
‘Technology, in its full meaning, is the disposition rationally to order and
predict and control everything feasible in order to master fortune,
spontaneity, violence and wildness, and leave nothing to chance, all for
human benefit’.
When the goals of technology are considered in this light, to reject the promised
benefits to humankind could be interpreted as retrograde, illogical and
counterintuitive. Hence, a further consideration influencing ‘autonomous’ decision-
making is faith and trust in the medical system, science and technology, with
technology being identified as delivering solutions to problems while perpetuating
the myth of invulnerability (Frank, 1995, p.135). As such technology use in
pregnancy care has been viewed as a valuable tool, almost a form of insurance
towards producing a healthy child (Kenen, 1996). Lippmann goes further,
suggesting that once offered, technology is craved, and hence the ‘need’ to apply it
is securely constructed and ingrained (Lippman, 1991). To understand the context in
which these events occur we must examine the seductive power of science on which
medicine is based (Noble, 1999), and acknowledge its prestigious position in
Western society.
Science, Chris Newell writes, is paradoxically constructed as simultaneously ‘value
neutral yet inherently good’ (Newell, 2007, p.66), a stance which fulfils the
culturally revered pursuit of objective truth, while also providing the vehicle to
deliver on the promise ‘to purify the human species of its physical frailties’ (Noble,
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1999, p.172). Noble’s (ibid) commentary, positions science as a messianic, salvific,
quasi-religious force whose mission is to restore the human species ‘to its original
perfection’, and re-establish human dominion over the earth. In daily clinical terms,
however, the immediate embrace of technology is more expedient and practical
although arguably underpinned by hope in the visions of deliverance articulated by
Noble (ibid). The prized notion of an authoritative, unbiased, and objective solution
that is readily revealed by the application of a simple test is clearly very appealing as
it reduces the need to consider the more complex and unpredictable human
dimensions of a problem. Furthermore, by removing deliberations from the moral to
the technical domain, the questions that become admissible for consideration under
the scientific paradigm change, being shaped to reflect those for which technology
may provide an answer. Consequently medical care is increasingly driven by what
parameters technology can measure, although not necessarily what patients want to
know (Sherwin, 1992). Kass (2002, p.36) further explains,
‘Science becomes not the representation and demonstration of truth, but an
art: the art of finding the truth – or, rather, that portion of the truth that
lends itself to being artfully found’.
Lindemann-Nelson (2001, p.128) makes further reference to the technologically
defined ‘clinically correct story’ noting,
‘the clinically correct story is a narrative of passing because it first
represents the person as pathologically abnormal, then offers to repair the
pathology’.
While Hilde Lindemann–Nelson’s (ibid) comments above were made in relation to
the gender re-assignment of adult transsexuals, the ‘clinically correct story’ may
equally apply in the context of prenatal screening which represents certain foetuses
as ‘pathologically abnormal’ then offers to ‘repair’ nature’s mistake through
‘medically indicated’ termination. The authoritative standing and relevance of
technology is thus perpetuated.
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The scientific discourse of medicine has of necessity become expert and removed.
However, the consequence of this segregation has been that non-expert (patient)
contributions may have become undermined, leaving many women feeling
uncomfortable and underqualified to participate in such complex technical
deliberations. The scientific orientation of medicine, Sherwin (1992) argues, has
created a distance between itself and those it practices upon entrenching paternalistic
processes with their inherent reluctance to share power. How would an ‘unqualified’
woman who rejects (or even questions) culturally revered technologies be regarded
within a context where technology is presented as progressive, desirable and
infallible? In this context, questioning the substance of scientific expertise and
authority would simply not be an option for many. It is this potential for exclusion
that Lippmann (1999a) suggests has encouraged some women to adopt overtly
medicalised language to describe their own experiences noting, ‘women may sense
that the more they speak the biomedical story (e.g., quote risk figures; go for genetic
counselling), the more they will be recognized as rational, intelligent decision
makers’ (Lippman 1999a, p.270). This strategy was chosen by Elizabeth who
couched her refusal to screen in the medicalised language of risk factors,
inaccuracies and false positives, a language she felt engendered more respect from
practitioners,
The reaction of the medical staff is such that if they can tell you’ve read up and you know what you’re talking about, then they give you more respect and more consultation, rather than being spoken down to , I’m not saying I know all the medical terminology, but at least I get spoken to like an equal. But I feel that they should give me all my options, not make assumptions for me, and I have a brain, treat me as such, this is my child, I’m the expert in that. I find that using their language, they give you more respect. Elizabeth
This form of ‘narrative surrender’ as Art Frank (1995, pp.5-6) describes it, is one in
which the dominant story that trumps all others is the ‘medical narrative’. He
explains ‘the ill person72F
73 not only agrees to follow physical regimens that are
prescribed; she also agrees tacitly but with no less implication to tell her story in
medical terms’. Thus the authoritative cultural imperialism that scientific pursuits
hold becomes entrenched (Lindemann-Nelson, 2001). Where the biotechnology
revolution is presented as progressive, scientific and rational, to stand in question is
to be cast appositionally, as potentially retrogressive, biased, or irrational. Hence, a 73 Or in the case of prenatal screening, the mother of the potentially ill child.
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degree of moral censoriousness surrounds our commitment to the culturally revered
pursuit of science. The potential alienation women may feel on rejecting the
presumed benefits of such technological imperialism was summarised by Anne who
declined an offer of amniocentesis. She explains,
I felt misunderstood; I felt that they couldn’t understand why I didn’t want screening especially if there was a potential problem, almost as though I was being irresponsible. I felt that I wasn’t fitting in, that I was bucking the system………that I was almost, a tinge of being irresponsible in that, here we are, we (health care professionals) can prevent these nasty things happening to you as a parent, not considering the child, and we can make your life easier and if you let us, we can take care of this and you can lead a happy life and not have to concern yourself with a child with special needs. It was when I said I didn’t want an amniocentesis, and explained that I would have this child whether there was something wrong or not ……I felt like I wasn’t accepting their help, and they thought I needed their help … I felt they didn’t understand. Anne
Although medicalisation of pregnancy is not the focus of this particular study, this
topic featured strongly in the midwives’ reflections. Possibly demonstrating their
professional commitment to act as advocates for the women in their care, many
midwives held strong views on the unacceptable and increasing levels of
technological intervention in antenatal care.
They have to go to a professional, maybe a medical officer in order to ‘find out’ if they are pregnant, in order to diagnose that they are pregnant…it’s ludicrous…why don’t women know their own body well enough to say ‘I think I’m pregnant’ so from the very minute you know you’re pregnant, it’s medicalised…after that you have to have a scan to see if the baby is alright, or the gender of the baby……..woe betide if you bought white clothes! You’d have to know whether to have blue or pink….Midwife 4.
Women who spend a fortune using IVF to get pregnant are often so far the other way in engaging technology that they can’t think for themselves without asking what would the obstetrician do, or the gynaecologists do? Midwife 2 Well….. childbirth is highly medicalised now…..and I think too much so…….I think the natural enjoyment of pregnancy and childbirth has lost its spontaneity…………I think even the mothers who come in for a scan………they come back and say can I have a photo of my baby, I have to keep an album……………it seems to be the most important thing……..it seems they are almost reliant on technology to get through the pregnancy……..it’s almost like ……..this scan or this doctor will tell me exactly what’s happening………..this doctor is going to tell me exactly what’s going on. [E: in that sense, is technology the tool that delivers the perfect baby?] Unfortunately, some mothers think that’s so………….it’s definitely not……but I think…yes….more and more……Once upon a time there was the obstetrician and the mother, now you have the obstetrician and the subspecialty in maternal and foetal medicine…..where we have more and more doctors training in the abnormality side of pregnancy….and that seems to be the up and coming specialty these days………and so …..everything seems to be centred around scanning, Doppler’s, foetal growth and the most minor little thing becomes a major thing………..so the women wondering how much has the baby’s brain grown, is it’s brain still OK, it hasn’t put on that much weight so they go away
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and think about that, so women become conditioned to rely on that technology…. It seems to be………..seems to be…that every detail is a point to be managed…..Midwife 1
The power of medicine, and thus women’s dependency on it lies in the expert and
exclusive ability to interpret the elite and complex scientific world from the vantage
point of the ‘specialist’. Subsequently, many women, such as Anne, find that their
‘non-expert’ contribution is rejected and their confidence undermined, leaving many
feeling inadequate and underqualified to participate in such specialist deliberations.
Consequently, many women simply have to ‘trust’ that their practitioners are giving
good advice, a trust acknowledged by the obstetrician who noted: Most go in assuming everything we do has a purpose and they believe in that purpose ……and are very, very trusting. I mean you can go along and do any number of blood tests and very few people will question what you are doing. I think they express a general trust in the system to do the right thing by them….the problem is that they don’t understand the dynamics of testing. Obstetrician
Most women in this cohort, with the exception of Terri, trusted at least one of their
doctors. This was articulated by Mary, who spoke about her obstetrician with respect
and gratitude,
He’s the one who’ll make you get through this ….you have to trust their judgement at some stage….which is sometimes hard but I do trust him …he’s very good . All the others were …I don’t know…….just there doing a job….but he was the one who made everything real and put things in perspective. I didn’t listen to them… [other health professionals] …….I just went straight to the one person I knew I can trust…………I’d just ring him up and say I’ve been told this and he’s say “Oh that’s stupid, that’s crap don’t listen to that, I’ve got your results here you’re fine”. I went to the one person I knew I could trust and I had specialists bombarding me. I went straight to the one person I knew I could talk to and I knew I could trust………I was very lucky to have that. Mary
Interestingly, Mary did not reflect upon how the trauma of the false positive screen
that she needed to ‘get through’ had eventuated in the first place. During her
subsequent pregnancy just over 12 months later, Mary’s obstetrician revealed that
the previous false positive which resulted in 12 ultrasounds, an amniocentesis and
almost eight weeks of intense psychological turmoil was probably a consequence of
residual hormone levels from an earlier miscarriage, a potential explanation not
disclosed with the initial result.
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Most practitioners in this cohort were acutely aware of, and deeply humbled by, the
degree of trust placed in them by their patients, speaking respectfully about the
mantle of trust they carried.
They are looking for reputable sources of quality information that’s something they can trust, so there is need to have some sort of authority about what you speak …….. I guess that comes from being in the hospital, or position as a doctor, the fact that you’ve been referred to see this person by other specialists, so they think you must know what you’re talking about. That places you (as a specialist) in a position that provides legitimacy to what you tell them, but……. establishing that rapport is probably an important aspect of developing that trust ……….I mean …..It’s probably a very important aspect, I guess, why should they believe you? Clinical Geneticist
While trust in technology may be a motivating factor to embrace screening, lack of
trust can equally shape interpretation of results, as one genetic counsellor noted: I think they are more willing to trust it when it gives them good results…………..people who haven’t been very trustworthy of nuchal results are where the nuchal might be OK but the bloods are high, the result is a bit wishy washy…………they try to find excuses for why that results might be askew…………I’ve had morning sickness, and I’ve had some Panadol, they come up with all these different reasons why the test is wrong…….. When it’s a bad result…… Occasionally, there are cases where someone has entered the due date wrong for the bloods or maybe haven’t been thorough with the mum’s weight, and that can dramatically change the result………so when people get one result and we have to phone them with the new result………..they don’t trust us then. Genetic Counsellor 2
Demonstrating the scepticism referred to above, Penny did not trust the initial
nuchal translucency result she was given, a lack of trust that was justified when she
was later informed that poor calibration of the instrumentation used to analyse her
blood tests now meant she fell in the ‘normal’ range and there was actually no
increased cause for concern. She explains,
I was so concerned about making sure they understood about the 40 day cycle which could throw out the result, I made everyone write it down, and again at the post scan where they were saying our risk was so high, I was reiterating , have you made sure you note this long cycle was taken into account, I really didn’t trust that they had got it correct….and a couple of weeks later they rang and said……we’ve recalculated your result and it now falls in to the normal range…..and apparently the machine had not been calibrated correctly…. And I just thought, well thank goodness we didn’t go ahead and have an amnio……..at that time…. We felt pressured but we thought thank goodness we didn’t bow to that pressure…………Penny.
However, the dominant story is one of automatic trust in science, a socially
sanctioned trust in technology and medicine which significantly conditions the
acceptance of technological intervention as necessarily good.
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Responsibility and Culpability
While there may be different expectations of mothering in different social contexts,
a consistent theme is that women, more so than men, are responsible for their
children’s well being (Lindemann-Nelson, 2001, p.136; Rapp, 2000). In
commenting on mothering responsibilities during pregnancy Kathryn Pauly Morgan
(1998, p.94) remarks,
‘Women are increasingly targeted for surveillance - largely as
reproductively defined, instrumentally valuable ‘vessels’ or ‘vectors’. The
medical surveillance of pregnant women occurs not simply in the physician’s
offices but on the street, in restaurants, in public settings, and in the privacy
of familial settings when medicalised norms of ‘responsible pregnancy’ are
used judgmentally to evaluate and criticise the behaviour of pregnant women
particularly with respect to alcohol and tobacco use’.
Expectations of ‘responsible pregnant behaviour’ dictate that good mothers engage
in risk-lowering behaviours to ensure their child’s safety (Lippman, 1991, 1999a).
Such behaviours range from the innocuous abstaining from soft cheese, to the
potentially harmful forms of prenatal screening such as CVS or amniocentesis with
their attendant risk of miscarriage (ibid.). Press and Browner (1995, p.153) further
claim that women want to be seen to be behaving responsibly, hence,
‘adherence to routines of scientifically based prenatal care…is women’s
only culturally approved means of reassuring themselves and others that
they are doing “all that can be done” to ensure a healthy pregnancy’.
Markens et al’s comment that women accept screening because it is presented as
‘the medically and maternally responsible course of action’ (1999, p.362), further
recognises the societal pressures placed upon pregnant women to ensure the good
health of the next generation. More recent health trends have extended the medical
surveillance of pregnancy to ‘preconception’ and ‘internatal’ care (Lu et al., 2006),
care before and between pregnancies, further extending women’s status in medicine
as reproductive ‘vessels’ (Faden, Kass, & McGraw, 1996). The explosion of
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preconception advice and websites bears testimony to the intense level of interest,
control, and management of pregnancy73F
74, marking the expansion of the
medicalisation and regulation of the female body, an extension to the existing
intrusion and regulation that has been widely critiqued in the feminist literature.
Perceived pressure to do the socially ‘responsible’ thing loomed largely for
respondents in Helm et al’s (1998) study exploring women’s experiences in
responding to a prenatal diagnosis of Down syndrome. Feelings of immense
pressure from family and friends to terminate an affected foetus within the often-
restricted time frame between a diagnosis and the medically preferred gestational
limit for termination of 20 weeks were also noted. The perceived time pressure
limited opportunity for reflection, assimilation of information or understanding of
alternatives, all considerations that may undermine the exercising of informed
consent. As previously claimed, exercising ‘choice’ in these circumstances
incorporates more than a simple, rational decision but is clearly constrained by the
deeply related, embedded, and multifactorial contexts in which such interdependent
choices are made. Indeed, Wertz (1992, p.498) acknowledges social coercion as a
significant factor, saying ‘the problem of informal social coercion is real and must
be addressed along with problems of formal legal coercion’.
While none of the participants in this cohort raised ‘responsibility and blame’ as
significant areas of concern, researchers elsewhere have revealed that many women
identify themselves as advocates for their child’s health and therefore take
responsibility to act towards ensuring their child’s best interests (Lippman, 1999a).
As a consequence of this enduring sense of responsibility, women have often felt
culpable and blamed by society if their decision not to co-operate in prenatal
screening regimes has led to the ‘negative outcome’ of an undetected disabled child
(Marteau & Drake, 1995 , p. 1128). Hubbard (1988, p.232) further reiterates this
point saying,
74 A recent Google search of ‘preconception’ advice sites in Australia retuned over 55 000 hits, and over 1.3 million worldwide. Top of the Australian list is www.motherhood.com.au, which begins with the caption ‘Starting to work on Project Baby’.
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‘If a test is available and a pregnant woman doesn’t use it, or completes the
pregnancy although she has been told that her child will have a disability,
the child’s disability is no longer an act of fate. She is now responsible; it
has become her fault’.
However, mothers’ self-blame is only one of the many potential sources of pressure
to conform to screening regimes. In their 1995 study, Marteau and Drake elicited
responses from medical staff, pregnant women, and the general population to two
case vignettes about prenatal screening decisions. In one case, a mother rejected
prenatal screening and gave birth to a child with Down syndrome, while in the other,
no offer to screen was given and a child with Down syndrome was also born. In
assessing these fictitious cases, the respondents attributed more blame to the mother
who rejected screening, leading Marteau and Drake (1995) to conclude that the
perceived ‘preventability’ of the outcome produced higher attributions of blame to
the mother, both from medical staff and the general population.
Psychologists identify that attempts to make meaning in the face of unexpected bad
news or illness often lead to attributions of blame. If a person is deemed to be
experiencing something beyond their control, caused by external factors, research
suggests that they are more likely to be supported by medical staff and less
blamed74F
75. The attributions identified above by Marteau and Drake (1995) may
impact upon how medical staff relate to, and care for, patients if there is a perception
that patients are culpable in creating their own poor prognosis, or that they have
rejected the medically proposed ‘benefiting’ action. This is an important point when
considering the amount of support women may receive during the critical period
immediately following the diagnosis, or potential diagnosis, of a disabling condition
in their child. Danielle’s earlier assessment of her doctors attitude that ‘it’s all your
problem now sweetheart’, or Anne’s perception that she was being cast as
75 For fuller discussion and relevant psychology references see Marteau and Drake, 1995, p.1127. Attributions of blame also permeate medical discussion of more recent ethical controversies surrounding the refusal to treat patients who are smokers (Peters, Morgan, & Gluch, 2004) or the UK government recent decision to exclude obese women from access to publicly funded IVF programs (Lynch, 2007). While there are additional medical considerations when operating on smokers such as increased recovery time from surgery, and higher likelihood of complication, as Tonti –Fillipini (Tonti -Filippini, 2004) cautions, such action may be discriminatory as it may unfairly target marginalised groups in society such as the mentally ill, who are twice as likely to be smokers.
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‘irresponsible’ provide pertinent examples of the practitioner attributions of blame
that Marteau and Drake (1995) allude to.
In responding to others’ curiosity about whether blame could be apportioned,
Elizabeth, whose older daughter Grace has Down syndrome, talked about the
presumptions that others held when broaching the question of whether she ‘knew’
about Grace’s condition before birth. Lots of people ask us if we knew before Grace was born, and I just say ‘Yes’, because the next obvious comment is poor you, you’ve been saddled with this child and you didn’t know…….So being pregnant with Rebecca was interesting because some people assumed that we would want to know, it mustn’t happen again…. it makes me cross…. if I just say I knew, it shuts down the conversation. ……I remember a really good friend who was mortified that we would even consider having another child after Grace, I said to her what do you mean , and she said, ‘you know’, and I said ‘no…. why?’. Of course I knew exactly, but I wanted to make her say it. Elizabeth
Even though Elizabeth felt no blame, had been advised of her daughter’s probable
condition before birth, had firmly rejected the offer of confirmation through
amniocentesis, and vigorously defended her daughter’s worth, value and right to be
born, she was still confronted on a regular basis by others’ prejudices and
presumptions of what she ‘ought’ to have done, and the steps to prevent the travesty
of another disabled child being repeated in her subsequent pregnancy.
However, blame and responsibility did not rest with mothers alone. Blame was
keenly felt by practitioners who similarly expressed feelings of responsibility when
an undetected child was born, as Penny’s doctor did. Although Penny had been
offered amniocentesis and steadfastly refused due to concerns about the possibility
of miscarriage, her daughter was subsequently born with a rare genetic disorder, one
which would not have been detected by routine amniocentesis. Penny recounted the
conversation with her doctor following the diagnosis which conveyed his sense of
regret and accountability. Thinking about it, the obstetrician was very….apologetic…..when we went back for the 6 week check up…..he said, I’m sorry you’ve been in hospital for so long, waiting for these tests, if there is anything I can do….after we got the result back,…….. He must have rung….and he said “I’m very sorry that’s come back with ******Syndrome75F
76 ……….there was nothing through the pregnancy that would have indicated a problem”…….and it was like he had a sense of, he wished he had picked it up……………because now you’re stuck
76 As the syndrome that Penny’s daughter was diagnosed with after birth is a rare condition, revealing it would identify her within the Brisbane community. To preserve Penny and her daughter’s privacy it is inappropriate to disclose it.
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with that…… I don’t really know, he may have genuinely been sorry……. but because we are a little bit cynical, we were like; he’s just covering himself……Penny.
Finally, even when ostensibly there was no blame to be apportioned, the following
comment highlights that physicians keenly felt the brunt of the unpredictable and
inexplicable outcomes, outcomes that are an inevitable part of the human condition.
I think finding blame …..expecting the perfect baby and not getting it, the consequence of that is anger…… that they did all the right things, ate all the right foods , so someone must have done something wrong , I guess that’s an outcome of promoting the idea ….that if you do all the right things and have all the right tests, then you will get this outcome, it makes people less accepting that bad things happen, and sometimes they happen to nice people………..it doesn’t prepare people……..they can’t accept the outcome and they feel there has to be a reason for everything……General Practitioner 2
Poor Understanding of Disability
‘Disability tends to be associated with tragic loss, weakness, passivity,
dependency, helplessness, shame and global incompetence. In societies
where Western science and medicine are powerful culturally, and where
their promise to control nature is still widely believed, people with
disabilities are constant reminders of the failures of that promise, and of the
inability of science to protect everyone from illness, disability and death.
They are the ‘others’ that science would like to forget’ (Wendell, 1996 cited
by Pauly Morgan, 1998, p.94).
Prevention of the presumed pain, anxiety, stress, and suffering of the disabled and
their carers is often cited as a positive outcome of early termination of a foetus
carrying a disability (Anderson, 1999; Baird, 1999; Clarkeburn, 2000). As many
disabilities, especially genetically linked ones, cannot be cured, conventional
medical wisdom dictates that they must be prevented. As flagged before, Clarkeburn
(2000) goes further, claiming that the prevention of pain and suffering is not simply
an optional benefit of screening, but rather ‘prevent[ing] a child being born whose
life would be worse than non-existence’ is indeed ‘a parental and moral obligation’
(ibid., p. 401). While the argument that life is worse than death for the severely
disabled is disputed as a socially constructed interpretation, entrenched by the
portrayal of disability as an unrelenting tragedy (Asch & Wasserman, 2005; Parens
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& Asch, 2000; Reinders, 2000), it is nonetheless a message that many pregnant
women seem to have received (Lippman, 1991, p. 23). This message is further
entrenched by the visible and experienced lack of support in the community,
confirming the difficulties of living with disability (Williams et al., 2002c). Tom
Shakespeare (1999, p.29) further laments the pervasive influence of such attitudes
on the directions and implementation of research policy and practice saying,
‘An outdated attitude that impairment equals tragedy and that disabled lives
are not worth living permeates the clinical literature and informs the
research policy on genetics.’
In their critique of prenatal diagnosis, Parens and Asch (2000) expand upon the
themes above. They assert that not only is prenatal screening morally problematic
because if its role in entrenching discriminatory and prejudiced attitudes towards
people with disabilities, but additionally, it contributes to negative community
attitudes through the perpetuation of misinformation about the lived experience of
disability. They further claim that prenatal screening potentially undermines the
character of the parent-child relationship, making it contingent upon the quality of
the child, while also eroding communal acceptance and tolerance of diversity and
inclusion. Parens and Asch (1999) further contest the normative representations of
disability in which they claim the negative aspects of living with a disability are
unfairly accentuated. Hilde Lindemann–Nelson (2001, p.82) offers some insight into
the damage to identity that such biased representations may cause saying,
‘Just as we construct self-constituting stories around the aspects of our
selves and our lives we care most about, so others construct identity
constituting stories around aspects of our lives that they care most about.
Sometimes these stories centre on the same features that we care about too,
and sometimes they don’t. And sometimes these others interpret a feature of
out lives very differently from the way we interpret it, which is to say they
construct a different story, with different plots and from different points of
view around that feature’.
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Within this cohort of mothers, Leanne’s attitude was most heavily influenced by
negative perceptions of what life with a disabled child would entail. Based on her
knowledge of a work colleague, whose daughter had Down syndrome, Leanne
interpreted her colleague’s life as one of ongoing stress and hardship, directly
stemming from the disability in her child. She explained
Knowing my colleague and her family, she has a son 3 years older than her daughter now, to see how it has affected their life and knowing that little girl. [E: Do you perceive that as a negative experience?] Oh God No!! No! Not negative, realistic!...... If I hadn’t known her I wouldn’t have had it, but by knowing that one in a blue moon, by knowing that one, it’s not some textbook side paragraph, it’s….. She was the one, so by knowing that one, that was my decision made, I’m having it because I could also be that one, and if I was that one I knew what to do. Leanne.
However, when questioned about the particular hardships involved in raising a child
with a disability, Leanne’s answer revealed little detail, other than the assertion that
she lacked strength and character, and was not confident that she would get adequate
support from others to cope with the additional, though unspecified, burdens.
[E: If you were motivated by the experience of your colleague in parenting a child with a disability, what is it about your colleague’s experience and life with her child that makes it so undesirable to you, that you would take steps to prevent that?] I think we hadn’t tried for a baby for long, the first time we tried we conceived so I felt lucky in that I was fertile, I knew there were no problems ‘down there’ (laughs), so I felt well, I haven’t got the strength of character to bring up a disabled child and seeing what she has to do to bring her up and the support that she needs, I have no family here whatsoever, got no support, nothing just me and my husband. It’s hard enough to bring up a child with no disability, but with no-one to support us. …….So that, in conjunction with the knowledge that we haven’t been trying for a kid for two years, we conceived first time, so I thought well……. [ hesitates] I would have terminated if I knew it was Down syndrome. Leanne
Even though Leanne acknowledged her colleague’s acceptance and love of her
child, she firmly dismissed the idea that it would ever be acceptable for her to
mother a child with Down syndrome.
In the beginning [of the pregnancy] in the first few weeks I asked her what had happened to her and she was quite upfront and didn’t mind telling …..but I didn’t want to get into how she was feeling now, I just wanted to know the facts leading up to the birth… and she said how she was in shock and didn’t want the child and tried to run away….. But that was in her shock and now she has this daughter who had Downs and that’s how it is. I did tell her that I was having amnio, and she said, well what will you do if the baby does have Downs? Obviously she has the point of view that her daughter has Downs so she wouldn’t think about abortion, because that’s her daughter. I didn’t say it [that I would
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abort], when I could see where the conversation was going I changed the focus of the conversation, but she knew me she knew my attitudes, but, no, I didn’t spell it out in black and white, because we’re friends. I mean you don’t tell someone who has disabled child that you would have a test to make sure your unborn child doesn’t have what they got….. You’re not going to say that to a mother are you? ……..[later in the interview]……..We’re quite close knit at work, and she is very career minded and we all…. all of us tend to think she does a lot of unnecessary work to get out of the house….because it is so hard at home.….and we all tend to think that as well, basically because she can go out the house, and leave all the stresses.….. I’ve never asked her in so many terms [if she has difficulty coping with her daughter] but…. I would imagine………Leanne
The contradictory nature of Leanne’s account, explaining her relationship with her
colleague as ‘close’ while persistently evading, and making unsubstantiated
presumptions about the daily difficulties her friend encountered served to entrench
Leanne’s predetermined schema which equated life with a disability to unrelenting
hardship. Leanne’s determined unwillingness or inability to question her firmly held,
pre-existing belief that Down syndrome would never be acceptable in her family
was stubbornly disquieting, and it also contradicts claims made by some disability
rights advocates (Biesecker & Hamby, 2000; Ferguson, Gartner, & Lipsky, 2000;
Parens & Asch, 2000) who have noted that personal contact and knowledge of a
person with a disability often dispels many misunderstandings and has been
associated with decreased acceptance of termination following prenatal diagnosis.
As a visible and recognisable disability, Down syndrome was often singled out for
specific attention by mothers and practitioners, as evidenced in the following
reflections, I guess there’s a focus on Downs because it’s because it’s a survivable chromosomal condition, the others usually result in miscarriage or still birth, or a baby that survives a few hours or a few weeks, but no longer. So back in the days when they instituted screening, the other abnormalities weren’t considered a significant group to look for because they are going to die anyway and they wont cost us anything......people don’t talk about that as much either. Children with Down syndrome are present in our communities, they are visible and it’s got this kind of focus that people have because it is a baby with a visible problem that is incurable and has a definite feature about it…that’s recognisable…. I think that’s why....but if you look at the eugenics of it all, the reason it was actually created and why anyone even screens from a medical perspective it was because we were trying to reduce the live birth rate of Down syndrome because Down syndrome children costs us money. So there is the public perception of Down syndrome being one of the few recognisable, versus the medical profession which is actually all about money…..not everyone in the medical profession saw it like that …many saw it as allowing people to have the opportunity to make pregnancy choices and providing information, but really it started out as a money thing….Obstetrician.
Relaying the story of watching a young man with Down syndrome on the bus going
to work each morning, one genetic counsellor struggled to reconcile the apparently
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unthreatening normalcy of this young man’s life, to the starkly contrasting anxiety
and perceptions of danger, risk and undesirability held by many pregnant women
she counselled through the day. She explained: …it’s concerning that they’re all anxious about Down syndrome but they don’t actually know what it is……I think for a lot of people... it’s almost like anyone with a disability is under that label of Down syndrome…..any intellectual impairment…. it falls under that umbrella…….but the fear…………I don’t know………where that comes from………[later in the interview] .……..there are times when I sit back and think, this focus on Down syndrome just kills me…………I guess because when you put it in perspective its just one thing and there’s a whole spectrum of other things that could be wrong with a baby that may not be known until the baby develops. Maybe it’s autism, maybe it’s cerebral palsy, goodness knows what….. So that focus on Down syndrome is challenging for me……….there’s no doubt about that and I’ve talked about it with my supervisors and things……………particularly when I come to work on the bus and I see this 20 yr old guy with Down syndrome looking like he’s going off to work you know and I look at him and I think ………oh……what are we doing?............It feels really harsh and it’s so pointed….. that it’s at Down syndrome, and I don’t know how I reconcile that in my head………..Somehow I’ve done it …….up until now………. But I do find that really challenging…Genetic Counsellor 2.
She continued noting: Sometimes people really just shock me with their reaction …..usually you get the “oh no…..we couldn’t have a child with Down syndrome” lots of phrases you get used to hearing I guess, like “I don’t want to sound cruel but…….”, or “I just couldn’t bring someone like that into the world” …..Things that make you wonder where they come from …..And they’re not specific, for the vast majority, it’s not a specific experience that makes people think that way….. It’s just society…….. That makes people think that way……what’s in their family……….you know…. Genetic Counsellor 2
Fear of disability and abnormality lie at the core of the attitudes expressed.
Understanding how such schemata of normality emerge, Lindemann- Nelson (2001,
p.111) extrapolates from Marion Iris Young’s (1990, p.59) account of ‘cultural
imperialism’ to suggest how the dominant discourses of ‘normal’ have come to be
perpetuated and entrenched in our collective understandings. She explains,
‘The dominant group takes its own experiences, achievements and values to
be representative of human nature per se. To the extent that other groups
differ from it, then those groups must consist of defective human beings. It’s
often habitual and unconscious fears and aversions that drive people in the
dominant culture to identify subgroups as deviant rather than merely
different, but an element of moral censoriousness regarding people who do
not conform to the norms of the dominant group can also be present in the
identities that are constructed through cultural imperialism. In identifying
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those outside the dominant group as deficient or defective, the group affirms
its own sense of who it is’.
Thus deviance, not difference, demarcates and defines the social discourse of
disability, and the quest for normalcy in reproduction promotes the intense
surveillance of pregnancy even when the methods used are incomplete and
potentially harmful. The quest for normalcy was identified by several practitioners
as a significant factor shaping the behaviours adopted by physicians and parents
alike:
I guess….. We don’t really handle abnormality very well……our society is very geared towards normality…and I think that those things matter most. From a medical point of view we are trying to pick up the serious things first…..to make sure everything is OK……I don’t think there is any education in terms of what Down syndrome is though………I think we offer screening…… but when you in fact ask people do you know anything about Down syndrome, that’s actually the thing they are not well educated about ….. They don’t have much knowledge about what it is they think we’re screening for…..Obstetrician Normality is very important to us when we talk about reproducing a human being…. In birthing a baby, normality is very important…they need to have the correct numbers of toes and fingers and ears in the right position although that’s not as noticeable as the digits…. And yet…normality of the process of the event of birth is not hugely important. It’s the normality of the product and I think that has a huge meaning because it reflects on the genetic normality of the parents involved and their parents and the whole family really, so abnormality is to be avoided at all cost and abnormality is almost something to be ashamed of so technology is one way that we can, to use business terms ‘insure’ ourselves against that a little bit. Midwife 4
One GP felt that by offering more and more testing the medical profession had
colluded in generating and perpetuating the false expectations prenatal screening
potentially generated, expectations which ultimately could skew parental outlooks. I’d rather we changed the mindset of the couple, the medical profession are going along with this idea of the ‘perfect baby’ ….there are no perfect babies……I mean your child may be diagnosed with autism at 2 years old, that can be far more devastating than Down syndrome, I think…. far more devastating, certainly as devastating. One of the fears with Downs, apart from its prevalence, is the intellectual impairment, I think people fear that….if it’s something like Cystic Fibrosis, people deal with that better because there’s no intellectual impairment, although ultimately the child will die, but yes….. I think we’ve planted the idea that the more we offer screening and options for women not to have an imperfect baby, the more we reinforce the idea that they should expect a perfect baby………….and there’s no doubt that that’s behind the litigation of obstetricians for every CP [cerebral palsy] child that’s born. We’re adding to this expectation of a perfect baby and a perfect child and people are confronted with this all the way along. Then they get a child with autism or bad asthma, who’s in hospital three times a year, or ADHD, or just has a really difficult personality….I mean we’re all imperfect, there’s just different types of disability. I just think as a profession, doctors are buying into that, not only buying in but really pushing it…women may go through this process and have a baby that doesn’t have Down syndrome at the end ………have the normal baby…..well that’s great, but what if they strike other things done
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the track…… I think if someone had every test and everything was fine, then they went and found what a [comparatively] small problem is really; I think it can unhinge some people…..because they expected a perfect baby. General Practitioner 2
Yet negative assumptions of what it means to be disabled or abnormal are strongly
entrenched within the discursive language of screening (Clapton, 2004). Use of
potentially prejudiced language such as burden76F
77, risk, prevention, coping, or
adjusting to disability, all imbue a message of unremitting hardship (Clapton, 2003;
Reinders, 2000). Similarly, adopting the language of ‘medically’ indicated
intervention may further perpetuate the non-acceptance of disability while
positioning the ensuing discussion as one of technical or biological importance
while simultaneously silencing the social, personal, and ethical. Language, therefore,
has the potential to narrow and perhaps even trivialise the terms of deliberation, as
this GP suggested:
I guess that’s one of my dilemmas with the whole way it is presented, even when I read the medical stuff , I have seen it written, and I don’t recall if it was a journal article or letter to the editor, it is described as “preventing” Down syndrome………….. And it’s clearly not ‘preventing’ [exasperated laugh]… it’s clearly not ‘prevention’ at all. Its preventing a live birth of a baby with Down syndrome. It’s not prevention of Down syndrome at all and I think that’s strong terminology in medical circles, but if that term gets out into society at large, I guess inevitably it will do….you know, ‘I want a test to prevent Down syndrome’,…………I think their would be many doctors who would never correct that terminology…I think that’s shocking…….everybody that is ultimately faced with that decision after amnio……I don’t think any of them take it lightly, so it’s not as if it’s a flippant thing, ‘oh we’ll just get rid of the baby’…..it’s heart wrenching for all of them, so use of the word ‘prevention’ trivialises the child, it also trivialises the decision for them to and it’s just not true……it’s just not true. General Practitioner 2
Given that much of the pain, anxiety, and stress experienced by people with
disabilities and their carers stems directly from lack of social and governmental
support, not from the disability per se (Ferguson et al., 2000; Shakespeare, 2001),
many parents of children with disabilities feel it is unreasonable to judge quality of
life based on a social norm in which the disabled are under-resourced and
misrepresented. As this obstetrician predicted, if adequate societal support was
forthcoming, medicine could function very differently in regards to what practices
were endorsed with respect to disability.
77 The word ‘burden’ is defined as ‘something emotionally difficult to bear, a responsibility or duty, to weigh down or oppress’ (Microsoft, 1999).
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In an ideal world if everyone was guaranteed adequate respite, adequate care, free medical care, free support and a community that always stood by them, so that when they died they knew that their child would be looked after, we would have a very different way of approaching this. I think it is very much an example of a community that is fractured compared to how it used to be….we don’t have extended families; we cannot guarantee that a child’s brothers or sisters when they get older would not look after that person. There are no extended families to offer support and frankly, Australia’s support systems aren’t too bad but they’re not fantastic when it comes to respite care for people looking after kids with special needs, they are really pathetic so I think that aspect is the main reason why older women choose to have termination….They are frightened of being 80 and still looking after a 40 year old with Down syndrome and then worrying about what will happen when they die ….and they don’t want to put the burden onto their other children…..Obstetrician
However, as this genetic counsellor realised with some resignation, There are people who have the blinkers on and no matter what we say they just have that construct that was in their head…… a lot of people say…oh society is so cruel ….to people who are different……..and……….they tend to have, I think a lot of generalisations on how people with disabilities are and what type of life they might have, or lead, whether that’s far, far from the truth or not?...............Sometimes it probably is….and some may have views from a few decades ago in terms of the type of living environment for a person with a disability…I guess……..so I see my role as giving them a ‘now’ perspective I guess, on people with disabilities……..about education and living and work opportunities and that there is really good support from the government and private sector and…………… I try to do that to give some balance………… but it’s just me talking against their values…..wherever they’ve pulled that from …I’d be surprised if it ever really helped……but I feel it’s my place to at least try to make that comment. Genetic Counsellor 2
Further compounding negative social attitudes to disability is the increasing
discourse towards self-reliance (Reinders, 2000), entrenching feelings of failure and
fear experienced by some women on the birth of an imperfect child. Social policy
shift in recent years now lays the ‘burden of care’ squarely in the hands of
individuals and out of the hands of institutions. The option to access institutional
care, or respite care, for a severely impaired child is therefore becoming more
difficult to achieve. This stark reality confronting parents confirms the difficulties of
accommodating disability in a society that seems measured in its support. However,
the need to construct a meaningful role and place for people living with impairments
is crucial in changing the social prejudices observed, as James Lindemann- Nelson
suggests ‘the proper response to this concern may have little directly to do with
reproductive decision making and a great deal to do with how people with
disabilities are incorporated into social life’ (Lindemann-Nelson, 2001, p.12), a
view echoed by the clinical geneticist who observed,
I still think generally there is a lot of sympathy for people whose children do have health problems……..and there’s not yet anyone who’s making those decisions because they had no other options available to them. It’s a complex area because …….I always remember a couple whose child had Down syndrome……. Their view was that………as a community
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….they saw fewer and fewer opportunities for this person to have economic employment, because there aren’t as many unskilled jobs in the workforce as there was once. They just didn’t see that there was a way for an economic future for that individual, who was intellectually handicapped, so that’s a big challenge for the community…… to have productive and meaningful roles for people particularly the intellectually handicapped. Clinical Geneticist
The ‘Preventable’ Cost of Disability – Cost//Benefit Analysis
An additional form of social pressure to screen with a view to terminate is the
recurrent message that the health care costs incurred in caring for the disabled may
be prevented by utilising prenatal screening (Biggio, Morris, Owen, & Stringer,
2004; Caughey, 2005; Cuckle, 1995, 2001; Harris, 2004). Based on utilitarian
justifications of the moral imperative to conserve public funds, such discourse may
exert further pressure on pregnant women to view termination as a socially
responsible act. Indeed Williams et al. (2002, p.749) revealed that some respondents
in their 2002 study uncritically viewed screening as an ‘economic solution to the
problem of disability’. That government and health care institutions should embrace
policies that overtly sanctioned termination of foetuses with disabilities through the
provision of generous medical rebates seemed plausible to Leanne who explained,
When, I got the invoice for the amnio and the consultation, it was almost $500, Medicare gave me back almost all, except about $20, there was hardly any gap at all, so they gave back half the consultation and nearly all of the amnio, and I thought Medicare doesn’t normally give out that much, maybe you should find out the exact figures77F
78, because obviously the government doesn’t want a Down syndrome child in society, because they are expensive …..So of course they are going to give you most of the money back, because they don’t want them in society because they’re expensive. [E: Research shows that around 90% of babies with Down syndrome are aborted, do you have any thoughts about that?] Well, I’d say……. well on that 10% for not, but …… If I asked my colleague if she knew in advance would she terminate, I’m sure she would say of course not, because she wouldn’t give up the love of her child that she’s known for 7 years, but I’m sure she would have liked to have known…… but I was very surprised to get all that money back, and I thought, well the reason must be because they’re an expense to society, and that’s a message that the health care is sending…… but for me I would have had it anyway regardless of the cost. Leanne
While Leanne was fully in agreement with this perceived (though false) explanation
of government collusion, Danielle remained more circumspect,
78 The Medicare rebate for amniocentesis (Item number 16600) is 75% of the scheduled fee, which is no higher than the rebate for most other medical services. See http://www.health.gov.au/mbs/search.cfm?q=amniocentesis (Accessed 12th July,2006)
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I imagine it’s probably a push from the government, I mean we don’t have the funds that we need to support these children and adults……..and all the other mental health and other issues……if we could just weed a few of these out it would be helpful...…part of me thinks that it wouldn’t surprise me in the slightest to find the government had been strongly advising women to terminate………..I’m a bit sceptical really……I don’t have a lot of faith in those systems generally………Danielle
Shakespeare (1999, p.31) strongly cautions against the insidious validation of
prenatal screening regimes on the basis of an overall positive cost/benefit analysis78F
79 ,
claiming that such justifications overstate the true ‘cost’ of being disabled, while
understating the fundamental reality that the human condition is ultimately one of
frailty in which disability may become a feature of any person’s life. He explains,
‘Equally, there is a pernicious tendency to develop screening policies on the
grounds of cost-benefit models. These arguments balance the cost of
detecting and terminating affected pregnancies with the cost of supporting a
disabled person throughout their life. Particular policies are defended in
terms of a reduction to the welfare or medical bills of a nation. This rests on
highly dubious assumptions about the cost of being disabled. It replaces
human rights with economic rationality. It ignores the fact that anybody
could become impaired at any time due to accidents or disease, not just the
very small number of people who are born with impairment’.
Shakespeare’s concerns flag the potentially sinister and destructive consequences of
equating human life to reductionist economic argument and were also shared by the
Clinical Geneticist of this cohort of practitioners who noted:
Well [cost benefit calculation] - that’s the economic rationalist argument for prenatal diagnosis….. I mean there’s no doubt that to avoid the birth of a child with an intellectual or physical handicap, or long term condition would save the community and Medicare lots of dollars…. but it’s a very poor basis on which to value the worth of human life and reproductive choices. Clinical Geneticist
Despite the obvious reservations and flaws, cost-benefit analyses are regularly
invoked as a fiscal justification for extending screening programs. Indeed, a recent
79 Also referred to in the literature as cost effectiveness analysis (CEA) (Caughey, 2005), and cost utility (Harris, Washington, Nease, & Kuppermann, 2004).
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US study, which estimated the success of prenatal screening against the unsettling
criterion of ‘live births averted’ 79F
80 (Biggio et al., 2004, p.726) from a hypothetical
cohort concluded that,
‘in terms of overall cost to the medical care system, the most expensive
course of action was to offer no screening and incur the expense of caring
for infants born with trisomy 21. The majority of the cost benefit attained
with the sequential screen is derived from the reduction in the number of
trisomy 21 live births.’
Similarly, Harris (2004) and Kupperman (2005) conclude that testing is cost
effective at all ages, advocating that screening be routinely extended beyond the
traditionally ‘high risk’ over 35 year olds to include all asymptomatic women, as
clearly anyone may be ‘at risk’80F
81. In their theoretical model, Biggio et al (2004),
uncritically present the loss of 1.4 ‘euploid’81F
82, or normal chromosome foetuses, per
single Down syndrome child detected as the most ‘successful’ strategy, making no
comment on the collateral damage of the 1.4 normal foetuses lost. As the financial
‘benefit’ portion of cost/benefit equation is solely realised by not providing medical
treatment to a disabled person for the term of their life (Baird, 1999, Biggio, Morris,
Owen, & Stringer, 2004; Caughey, 2005; Cuckle, 1995, 2001; Harris, 2004), such
analyses only measure up when termination rates remain high. Cost benefit analyses,
therefore, perpetuate the institutionalisation of disability prejudice. The ethically
contentious and potentially eugenic nature of the presumption to terminate is not
explicitly confronted by any of these authors, while the unwanted fiscal
responsibility of caring for the disabled within the community further permeates the
discourse of pregnancy, bleeds into institutional policy and practice, and contributes
to hostile attitudes to people with disabilities (Parens & Asch, 2000). Furthermore,
the presumptions of cost-benefit analyses may position the social responsibility to
prevent the financial burden of caring for the disabled unfairly onto the shoulders of
individual pregnant women.
80 Note the language of risk – avert: to avoid something harmful. 81 Understandings of risk perception will be discussed more fully in Chapter 7. 82 Euploid: The normal number of chromosomes for a species. In humans, the euploid number of chromosomes is 46 with the notable exception of the unfertilized egg and sperm in which it is 23. http://www.medterms.com (Accessed 10th December, 2007)
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While Cuckle (2001) and Biggio et al (2004, p.726) acknowledge that economic
grounds may be eclipsed by social, ethical and political considerations, noting that
‘individual patient desires and values also merit consideration’, they maintain that
the fundamental decision ‘should be evaluated from the payer’s perspective’, the
‘payer’ being the health care provider. Against the cultural backdrop of economic
rationalism in health care, cited costs of $1220 per detection of Down syndrome
compared with an incremental lifetime cost of $228 400 to care for a child with a
trisomy (Harris, 2004, p.280) illustrates a stark mathematical reality, one which
fiscal logic dictates we endorse if economic rationalism is our ‘hypergood’. While
most cost-benefit analyses focus on the direct medical costs, ‘for ease of
measurement’, Macones and Odibo (2005, para 5) note that ‘it is widely accepted
that indirect and intangible medical costs often overwhelm direct medical costs’.
Indeed the ‘intangible’ costs of pain, suffering and grief (Macones & Odibo, 2005),
and the potential cost to women’s ongoing physical and psychological health and
wellbeing seem poorly factored into reductionist cost-benefit calculations (Tankard -
Reist, 2005, p.19). As a result, the reduced form of data deemed worthy of
consideration in such calculations presents an impoverished, distorted, and
incomplete measure.
Reflections on why certain procedures come to be funded at the expense of others
remain masked in the cost-benefit framework which essentially shapes the choices
on offer. As this obstetrician explained:
We will always focus on things we can test for, and the things we can’t test for or that aren’t realistic to test for, because they wont pick up enough to justify the cost, obviously those things will just be put down to the bottom, because you cant warn or make people anxious about something you can’t exclude……So obviously from my point of view a child with Cerebral Palsy that is severe, who needs 24 hour care is a lot more to embark upon than a child with Down syndrome,…… but we have no way of predicting that. I suppose the kind of things we try and avoid are poor outcomes from normal delivery, we’re trying to reduce prematurity, we’re trying to reduce adverse outcomes in late pregnancy anyway, we just can’t test for it though…and we can never really get rid of everything, so that’s why that’s been focussed from a different point of view. The things we can test for will always have a more visible impact on people. Obstetrician.
However, the question preceding such communal health care decisions, and one
raised by Alfirevic and Neilson (2004) is:
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‘What is the importance of establishing top quality Down syndrome
screening programs relative to other priorities in the maternity services-
notably tackling inequalities and ensuring that all women in labour have
enough midwives to meet their needs?’ (Alfirevic & Neilson, 2004, p.812)
The unease of acknowledging the concealed value judgments about persons with
disabilities that such practices imply and imbue was voiced by the Obstetrician who
noted: As soon as you start educating, you’re going to come up against groups of people, disabled rights groups or right to life groups who will say you are educating people to make judgement values about the worth of a life…and I think that is actually a problem. It’s why people don’t talk about it as openly…..some of it reflects individual judgement values about pregnancy choices and the value of a life. I think of it in a much wider scale than just education, it’s the fundamental issues that face society about once you start to talk about it you are admitting that you are placing values on certain levels of normality….and what is a variance of normal versus a true abnormality that kind of thing, people don’t want to face it so they avoid talking about it. Obstetrician
Whenever the subject of terminating disabled foetuses is raised, accusations of
eugenic intent inevitably follow. While many commentators invoke coercion as the
key differential in the ‘imposition’ of a eugenic agenda, as previously mentioned,
coercion of the more subtle, social forms addressed throughout this thesis may still
constitute coercion. Other social commentators such as Abby Lippmann (1991,
pp.24-25) remain unconvinced by what she sees as the insincere denial of the
eugenic intentions within saying,
‘though the word “eugenics” is scrupulously avoided in most biomedical
reports about prenatal diagnosis, except where it is strongly disclaimed as a
motive for intervention, this is disingenuous. Prenatal diagnosis presupposes
that certain fetal conditions are intrinsically not bearable’.
The current focus on cost/benefit analysis as a justification for detecting foetal
anomalies from a largely asymptomatic population may indeed represent an
emerging form of ‘fiscal eugenics’, discriminatory and eugenic outcomes driven by
the privileging of budgetary considerations above care provision within the
healthcare system. A 1926 quote from the American Eugenics Society states:
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‘Does eugenics mean less sympathy for the unfortunate? ... Eugenics does
not; it does mean fewer unfortunates with which to divide sympathy. This is
true kindness to both the victims and to society’ (American Eugenics Society
cited by Nelkin & Lindee, 1995, p. 31).
Rather than dividing sympathy, as the 1926 eugenicists did, we may be embarking
on a path to limit the number of disabled members entering our communities by
withholding or dividing financial resources. The social context and tacit
expectations may therefore act to exert a social pressure on women undergoing such
tests by creating a moral space where individuals ‘choose’ to implement society’s
prejudices (Hubbard, 1988).
Chapter Summary
Social constraints identified through the voices of participants and established
research show that the rhetoric of choice and the expectation that engaging in
prenatal screening will automatically enhance choice has significantly infiltrated our
collective psyche and seems generally and unproblematically accepted. However,
within the rhetoric, the reality appears to be that choice is deeply constrained and
funnelled towards the socially and institutionally endorsed ‘choices made available’.
Entrenched negative attitudes towards disability and the poor understanding and
under resourcing of people with disabilities create an atmosphere of fear, culpability,
and blame; an atmosphere in which choice is further delimited. When coupled with
faith that science can provide the much hoped for control over the unpredictability of
the human condition, a stance which Art Frank (1995, p.135) claims perpetuates the
myth of invulnerability, embracing technological intervention to ‘prevent’ disability
seems an obvious route to follow. In addition to the socially sanctioned and
scientifically revered aims of prenatal screening, the economic rationalist values that
increasingly permeate institutional health care dictate that the cost-benefit
justifications for pursuing and expanding screening regimes mutually reinforce the
scientific and social schema.
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The factors discussed in this chapter are by no means exhaustive. However,
collectively, they illuminate a dynamic of fear and blame overlaid with the promise
of control and power, a dynamic which entrenches prenatal intervention as the
morally, medically, and financially responsible course of action. While prenatal
screening potentially can facilitate enhanced choice for some, when presented
routinely and unproblematically in an institutional context which may systematically
undermines and impedes women’s opportunities to gain ethically adequate levels of
understanding, the underlying socially prejudiced beliefs that drive such intervention
remain unspoken.
The next chapter will consider the personal constraints that impact upon the
delivery, interpretations and acceptance of prenatal screening.
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CHAPTER 8
VOICES IN CONTEXT:
PERSONAL CONSTRAINTS
Introduction
In addition to the philosophical, institutional and social constraints previously
considered, many personal constraints also exist. The perceived need for
reassurance, individual perceptions of risk and the belief that the targeted type of
information revealed by screening may inject a degree of certainty or confidence
into the vulnerability and uncertainty of pregnancy, are commonly cited personal
factors which mould women’s behavioural choices. In combination with varying
personal capacitates for understanding the often unfamiliar medical routines and
terminologies, including risk interpretation, these personal constraints further delimit
how ‘choice’ and ‘consent’ may be interpreted and negotiated. It is to these personal
factors that we will now turn.
Reassurance and the ‘Desire to Know’
‘If knowledge is power, then ignorance is powerlessness’ (May, 1994, p.77)
‘Knowledge does not always empower; instead it may confuse and paralyze.
Parents may have to contend with perhaps the most unforeseen consequence
of it all; too much information, that is information they never realised the
testing might yield, and information they are not equipped to handle’
(Kolker & Burke, 1994, p.165).
The quest for ‘reassurance’ coupled with the ‘desire to know’ features significantly
in explanations women give of why they participate in prenatal screening
programmes (Harris et al., 2004; Lippman, 1991; Press & Browner, 1993, 1997;
Santhalahti, 1999; Santhalahti et al., 1998). As only 1% - 3% of pregnancies carry
some form of abnormality, not unexpectedly, many women experience the
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reassurance sought. Several studies claim that the virtues of prenatal screening
extend beyond that of mere reassurance claiming that screening is psychologically
rewarding, an experience that acts as a catalyst for positive behavioural changes
such as improving diet or stopping smoking, and one which facilitates increased
maternal attachment and foetal bonding (Ji et al., 2005; Lumley, 1990). However,
these positive outcomes are not universally accepted, with others, for example van
den Berg (2005), noting only 8% of respondents felt reassured. Scanholzer,
Gatzmann, Zimmerman and Buddeberg (2000) further argue that there is no
concrete evidence of any long term or lasting benefit to maternal attachment,
suggesting instead that the reassurance gleaned is simply a temporary artefact of
relieving the anxiety induced by the screen itself. Scanholzer et al (ibid) therefore
conclude that screening may not enhance the ability to cope with a negative
outcome, but may simply prolong the period of anxiety and stress following an
unwelcome result.
In the absence of any obvious or immediate harm, with no apparent reason to
decline, accepting screening with its promise of reassurance and presumption of
increased control may appear ‘self evident’(Santhalahti et al., 1998). This was the
case for most of the mothers in this cohort who seemed to believe that, as noted by
Whynes (2002), if a test is offered by a trusted practitioner, it must be safe.
Reinforcing observations by Marteau and Slack (1992), Calman (2002), and
Edwards (2003) have observed that positive health professionals’ attitudes are
pivotal in shaping and framing perceptions about screening. The following
practitioner comments similarly reflect positive personal and professional attitudes
towards screening:
I think it can become a very useful test to give early re-assurance, or otherwise for women……it’s the best screening tool that we’ve got. It doesn’t harm the baby; it harms the mother at times [laughs]………..it’s easy to do, its relatively cheap…………..if we can reduce the number of women going straight to amnio then that’s another benefit. Genetic Counsellor 2 I think the main thing if you’re looking at the patient’s point of view for requesting a prenatal screen is probably reassurance because there is a degree of fear and anxiety. Obstetrician
Women want to be reassured that their child doesn’t have that…….more than they actually think about what they’ll do if the test shows they do. General Practitioner 2
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I guess they do it for peace of mind to know the baby is OK and not to worry about it for the rest of the pregnancy, or getting prior knowledge of a problem to prepare themselves mentally. Midwife 1
The issue of reassurance for ‘certainty’ was raised by one Genetic Counsellor,
[E: Why do women accept prenatal screening?] Because they want certainty and desirability…in their offspring [E: Does prenatal screening give them certainty?] Some, but not full certainty……… [E: Do you think people understand what the uncertainties are?] No……………because they don’t understand that having a baby is a risky business………they don’t understand that 2-3% of the population will have a problem with their baby………..whether it be a learning disability or a turned foot……..some people are more concerned with intellectual disability and some with physical…..so, no I don’t think that people understand that they don’t start off with 100% chance of a healthy baby. I think people want a healthy baby………………..because I personally would. Genetic Counsellor 1
Another GP questioned the worth of exposing a mother and foetus to the potential
risks of screening if a woman did not intend to ‘act’82F
83 on the result saying,
I mean if someone says they are going to go ahead and have the baby anyway, it doesn’t necessarily abrogate the test, but………..it then raises the question that if you’re going to do an amnio and turn up a Downs, …given the fact that the amnio has a risk ……not only to the foetus, but also to the mother, why do the test?....... but if the person for social , religious or you know…..emotional reasons has already predetermined what they want to do with their body and their pregnancy, then ultimately you work around that constraint. General Practitioner 1.
While being prepared to accommodate the ‘constraint’ of individual patient’s moral
or emotional frameworks, this GP felt a valuable reason to pursue widespread
screening was to assist the practitioner. Prenatal screening may be relevant even if a woman is determined to continue with the pregnancy…..just purely to make the job of the obstetrician a bit less stressful…and indeed hopefully maximise the opportunity for a good outcome…even if the foetal outcome is not particularly good you don’t actually want to compromise the maternal outcomes as well……General Practitioner 1.
83 In most of the literature, the only acknowledged proactive action is termination, the decision to ‘not act’, i.e. to keep the child, is commonly presented in passive terms, although this too is an intentional action. See Coory (2007) for example.
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Positive endorsements from practitioners with their inherent suggestion that there
was something definitive and valuable to know were influential for Mary, who
explained, They sort of said ….well unless you want to go through this whole pregnancy not knowing, you’ve been given this test result this will put your mind at ease …if you want to not worry about it that’s fine but……Mary
Yet the selective list of anomalies routinely screened for includes only a small
fraction of the multitude of potential possibilities. Even then, conditions for which
treatment can be offered, other than selective termination, are relatively few (Baird,
1999; Press & Browner, 1997; West & Bramwell, 2006). Indeed, as previously
flagged, most neonatal disabilities result from ‘low birth weight, prematurity, viral
or bacterial infection, birth trauma or accident’ (Baird, 1999, p.9), none of which
can be predicted by prenatal screening. A welcome test result in reality offers
limited guarantees, and may even create an unrealistic or false sense of reassurance
when the result is negative (Marteau, Slack, Kidd, & Shaw, 1992). As observed by
this GP, the negative psychological sequelae that can flow from poor understanding
of the limited scope of screening may be equally distressing or harmful. I do think it’s very important [to make clear what these tests can’t tell you], people still think you can have a blood test for everything…………..people sometimes come in and say, ‘I want a check up, just test everything’ [laughs]……and they really think you can ‘test everything’….I shouldn’t laugh because we’re obviously not getting the message across……and there are people who think that antenatal screening tests everything. I think you really have to point that out because people will think when they have a baby at the end who may have a club foot…they get really upset…. because the ultrasound hasn’t picked it up……they have a lot of faith that the 18 week ultrasound will pick everything up…..I think that increases their risk of postnatal depression and just general emotional ability around having the baby……..it can effect their enjoyment of the baby, just because they’re not prepared…General Practitioner 2
Several midwives also verified that the common perception among the women was
one of over optimistic trust, captured in this comment:
A lot of women come with the expectation that if the nuchal is OK then everything will be perfect… Midwife 1
Amidst the mothers’ cohort there was a degree of confusion, some cynicism, and
even a sense of betrayal about the fragile worth of the much hoped for reassurance.
Danielle remarked:
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……….I mean I went through that complete stress for nothing and [my mother] still says to me look at that baby, look at that child and you went through all of that …..and it was all for nothing..............I tend to agree with her………I mean technology has a place…….its a reassurance for things so far…..but it’s limited reassurance…Danielle
Illustrating the observations made elsewhere that the sensation of reassurance may
simply be relief from the anxiety generated by the tests themselves (Harris et al.,
2004; Kowalcek et al., 2002; Liamputtong & Watson, 2002; Schanholzer,
Gatzmann, Zimmermann, & Buddeberg, 2000; van den Berg et al., 2005), Mary
explained: Before the test we had never even discussed it hadn’t even entered our minds……………it didn’t occur to us that we could be in this group where something could be wrong……..and hadn’t even crossed my mind……(after the amniocentesis)….I guess it’s mind easing to get a good result but I wouldn’t say it was iron caste, it meant to me that I didn’t have to worry about the next few weeks if there was something really wrong………….with my obstetrician he just did a scan on me every time I went to see him to make sure that everything was OK, with the baby’s size and so on. Mary
Undoubtedly Mary sensed some reassurance from the ‘good’ amniocentesis result,
however, the anxiety raised by the prior ‘bad’, false positive result clearly lingered
resulting in 12 anxiety reducing ultrasounds, to ‘make sure everything was [still?]
OK’ 83F
84. The attitude that false positives were ‘good mistakes’ was raised by Danielle, Their attitude (to the false positive) was like ‘well that’s good news isn’t it! That’s all worked out alright then” and I was like, well yes it’s great news, but it’s a shame I had to go through it! I don’t tend to question that sort of thing…..I mean perhaps it would have been even better news if we hadn’t done the ultrasound in the first place and not gone through that horrific time………….yeah………….my GP ………….the doctors at the hospital, once they suspected it was a false positive, they just went………..they didn’t want to talk about it ……it had nothing to do with their current thing for that week. Danielle
While Mary’s response to her heightened anxiety was to embrace extensive
surveillance of her pregnancy, like some of the women in Heyman et al’s 2006 study
Terri’s ‘high risk’ status spurred her to ‘disengage’ from her health care providers,
to seek her own reassurances through self-directed education.
I definitely wasn’t prepared for other problems being flagged, and I really wasn’t interested in finding that out. I had just come to the realisation that none of these tests, and this was never pointed out to me, that none of these tests could help me with the thing I was concerned about (Noonan’s Syndrome). That was never pointed out to me. They told me the tests would tell us about the Down syndrome, neural tube defects would be covered, none of which was what my cousin’s child had, but they didn’t point that out to me – I did my own research, I found that out. I just got on the internet; it took 15 minutes, it’s amazing what
84 The potential harms of excessive ultrasound use in pregnancy are not yet clear, and research continues. However, professional bodies advocate caution and counsel against excessive use. See Section B Introduction.
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you can find there……... I thought I've done this for nothing……. I was quite anxious about the whole thing. Terri.
Notably, Leanne articulated a strong sense of reassurance and control, while
acknowledging that other potential unforseen negative outcomes were possible.
Given her consistent focus and fears directed towards Down syndrome, perhaps this
one specific piece of information, that her child definitely did not have Down
syndrome, was sufficient reassurance. I felt reassured in that… [amnio was negative for Down syndrome], but of course there’s loads of other things that can go wrong as well, besides Down syndrome, at least I knew that was one thing that I could tick off, I was reassured in that , but of course you still worry about loads of other things that you have no control over. At least this I had control over, everything else had no control over, but that I had control and I’m a bit of a control freak so……..Leanne
Although Leanne could indeed exhibit control and agency in choosing to diagnose
or terminate a pregnancy if her child had Down syndrome, in the face of the
multitude of uncertainties that exist, her sense of control was perhaps overstated.
Lippmann (1991, p.25) claims that the selective nature of the reassurance gleaned
from screening is too restricted, simplistic and reductionist to be of any tangible
consequence, continuing, ‘at best, reassurance is an acquired, not inherent,
characteristic of prenatal diagnosis. Even if testing provides “reassurance”, it is of
a particular and limited kind’. Far from delivering clarity, most forms of prenatal
screening offer ‘an opportunity to move from complete uncertainty to quantified
uncertainty (West & Bramwell, 2006, p.66). While this may seem a more attractive
prospect than ‘unquantified uncertainty’, the paradox of this testing dynamic is that
asymptomatic women, like the mothers in this cohort, must first have their attention
selectively drawn to a particular, though incomplete, list of undesired outcomes,
increasing anxiety levels, which engaging in testing may then selectively relieve
(Harris et al., 2004; Kowalcek et al., 2002; Liamputtong & Watson, 2002; van den
Berg et al., 2005). In a scenario reminiscent of Lindemann-Nelson’s (2001, p. 126)
earlier description of the ‘clinically correct story’, screening protocols
simultaneously create anxiety in women by decreeing them to be ‘at risk’, then offer
a technologically mediated, culturally sanctioned and socially visible way to gain
reassurance and lower their ‘risk’.
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The frequently cited script of providing reassurance through giving ‘time to prepare’
for a child with special needs is often floated as a further positive outcome of
screening as this midwife explained:
I guess they do it for peace of mind to know the baby is OK and not to worry about it for the rest of the pregnancy, or getting prior knowledge of a problem to prepare themselves mentally. Midwife 1
Yet in light of the elective termination rates, commonly above 90%84F
85, the
presentation of screening as a preparatory tool seems exaggerated, while the
expectation that anyone could possibly ever be prepared enough was gently rejected
by the Down syndrome support volunteer, who explained:
People think they can gather knowledge and be prepared, but I don’t think you can ever really be prepared for everything in life. Not knowing myself gave me the chance to enjoy the pregnancy, look forward to meeting my baby, and when the baby was born we were instantly suspicious that something wasn’t right, but there she was and we were offered appropriate support and we moved through the reactions that parents go through, grieving, but I think for women to be put through that when they are most vulnerable and pregnant is just so unfair. Down Syndrome Support Group Volunteer
The particular type of reassurance sought or provided however is rarely specific.
Rather, women seek a broad, general sense of comfort that the pregnancy is
progressing normally (Lippman, 1991; Santhalahti, 1999). The reassurance that a
disabled person will be supported in the community is rarely offered, rather, the
reassurance offered is that a defective child will be identified and the frightening
outcome of parenting a disabled child will be averted (Bridle, 2004).
In spite of these critiques, the perceived ‘need’ for reassurance persists; a need
which Lippmann (1991) argues is constructed and perpetuated by technology use
itself. When coupled with the widely expressed conviction that knowledge is benign
and not harmful of itself, a powerful motivation to engage in screening is formed
(G. Anderson, 1999; Press & Browner, 1993; Santhalahti, 1999). Yet the
commonplace belief that all knowledge is valuable or empowering rather than
potentially paralysing or confusing is clearly challenged by Kolker & Burke (1994)
as already quoted above. Similarly, Regina Kenen challenges, ‘if a “gift” of
knowledge offers no cure, is it valuable?’ (Kenen, 1999, p.1545). Indeed,
85 Carothers et al., 1999; Egan & Borgida, 2002; Erikson, 2001; Ford, 1999; Garne, 2001; Santhalahti, 1999.
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knowledge does not always empower. For Terri , Mary, and Danielle their, perhaps
naïve, expectation that the knowledge gleaned from their initial scan might be
meaningful, instead invoked intense anxiety as they entered the unforseen ‘grey
area’ of imperfect, incomplete, and unable to be completed knowledge which
created intense distress and bewilderment. While one GP felt women were acutely
aware of the medical reason for screening, which is to find abnormality, the common
approach of framing an offer to screen in terms of “making sure things are ‘OK’”
instantly raises a suspicion in women that ‘things’ may not be ‘OK’. Thus women
are conditioned to accept the limited reassurance on offer.
I think women are aware that the reason the test is being done is to make sure that everything is alright. Now, that’s one way of looking at it, you’ve described it as a more positive search for abnormalities. I don’t think they are diametrically opposed; they are two sides of the same coin, but I don’t think women regard it as just an opportunity to see the baby, they know there is a medical purpose. General Practitioner 3.
The primary purpose of prenatal screening is undoubtedly to detect and to ‘prevent’
disability. Hence, any subsidiary benefits such as gaining reassurance, promoting
bonding, or reducing anxiety are all ancillary and surplus to the fundamental task.
They are not guaranteed outcomes of testing; hence, to suggest that screening is for
these purposes is misleading.
Efforts to determine whether prenatal screening predictions have been correct
through foetal autopsy are limited. Data gathered in the UK observed that despite
increasing termination rates, foetal autopsies rates which could verify prenatal
diagnosis and thus provide valuable reassurance and professional verification are
falling (Boyd, 2004). Boyd (ibid) further claims that only 30 – 60 % of terminated
foetuses undergo autopsy to confirm diagnosis, while a recent French study of 300
foetal autopsies, found autopsy examination changed the prenatal hypothesis in 20%
of cases and confirmed the original hypothesis in 39% of cases85F
86 (Laussel-Riera et
al., 2000). Other studies correlating prenatal diagnosis with autopsy findings report
a healthier, though still variable 60% - 90% confirmation (Ramalho, Matias,
Brandao, & Montenegro, 2006, p.1087; Johns, Al-Salti, Cox and Kilby, 2004;
Brodlie, Laing, Keeling & McKenzie,2002; Tennstedt, Chaoui, Bollman, Korner, &
Dietel, 1998). 86 The remaining 41% required minor changes in diagnosis that were not medically significant.
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As flagged earlier, Queensland has unique and particular problems in establishing
such an evidence base such as the fragmented health care delivery and the legal
constraints that diminish transparency. With termination remaining under the
Criminal Code, collection of foetal autopsy data as a result of termination is
disjointed, sparse, and very limited prior to 20 weeks when most terminations for
foetal anomalies occur. This data, which may provide some communal reassurance
that the outcomes of prenatal screening are indeed based on accurate predictions,
would be of significant value in assessing and shaping future practice and ought to
be more vigorously pursued.
While most studies considering the psychological impacts of prenatal screening
focus on the outcomes for women (Harris et al., 2004; Kowalcek et al., 2002;
Leithner et al., 2004; Watson et al., 2003; Zamerowski, 1999), practitioners too have
a vested interest in reassuring themselves. As flagged earlier, fear of potential
litigation against medical staff rather than genuine patient need may be contributing
to strong recommendations to participate given by many doctors (Anderson, 1999;
Press & Browner, 1997; Stapleton et al., 2002; Williams et al., 2002b), representing
a different form of reassurance, one sought by medical staff, mindful of avoiding
possible lawsuits (Williams et al., 2002c) . Indeed, as mentioned previously, the
‘legal grey area of malpractice for not offering tests’ (italics added) has been
identified as a factor in the increasing numbers of women being offered the MSAFP
blood test in one province of Canada (Press & Browner, 1997, p.980). Hence, a
mutually reinforcing bond of anxiety and trust between specialist and patient is
formed which entrenches the normative and routinised pathway of the offer and the
acceptance of prenatal screening for reassurance.
Finally, if women and practitioners perceive the need for reassurance, the question
of why women feel ‘at risk’ must be asked. As one genetic counsellor remarked
earlier, pregnancy is a “risky business”, but who is at risk, can we know the extent to
which they at risk and can risk status change? The next section of this chapter will
examine the discourse of risk that has infiltrated our daily language and perceptions,
and significantly altered our views of pregnancy and antenatal care.
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‘Risk’ in the Context of Antenatal Care
Risk assessments increasingly permeate various aspects of our daily lives, choices,
and perceptions, including those choices relating to health care generally and
antenatal care specifically (Helen, 2002; Olin Lauritzen & Sachs, 2001). Indeed, on
reviewing the incidence of the term ‘risk’ over a 24 year period in medical journals,
Skolbekken (1995) concluded that we are indeed in the midst of a ‘risk epidemic’
which is both prevalent and contagious. Drawing on the work of Armstrong (1995)
and de Swann (1990), Olin-Lauritzen and Sachs (2001, p.499) track the 20th century
emergence of ‘surveillance medicine’, from which the ‘not yet patient’ category of
illness emerged. In positioning the previously healthy person as a ‘patient in
waiting’, attention has increasingly turned to identifying and quantifying the various
risk factors that may forecast the likelihood of illness occurring. These forecasts
inherently promise prediction and thus control. Consequently, the previously distinct
categories of ‘healthy’ or ‘unhealthy’ have become blurred and we are increasingly
invited to regard ourselves and others, not as ‘well’, but rather ‘potentially unwell’
and thus in need of scrutiny and surveillance86F
87,87F
88. The ‘dragnet’ effect, which pre-
emptively regards everyone as potentially under threat, has significantly seeped into
the discourse and protocols of antenatal care as described below,
‘Intended to benefit everyone equally, the dragnet treats all pregnancies as
potentially pathological and needy, drawing pregnant women into anxious
dependence on expert medical risk management’ (Alderson, Williams, &
Farsides, 2004, p.75).
Not surprisingly, the negative language of risk, anomaly and defect that now
intrudes into pregnancy care has created considerable anxiety in women (Anderson,
1999; Lippman, 1991). Even use of the word ‘risk’, which means ‘the possibility of
suffering, harm or loss’ 88F
89, conveys a strong message of impending crisis. Thus
‘risk’ is not a neutral concept, but one that contains ideological messages which
87 Abby Lippmann (1991, 1999) further argues that surging interest in genetics will simply exacerbate this established trend, leading to what she describes as ‘geneticisation’. 88 This view is also claimed to be instrumental in the rise of ‘worried well’. See for example Bates, (2007) and McCredie, (2007). 89 Microsoft, 1999.
223
have become ingrained into the contextual and narrative features of the information
given to women, features which immediately raise concern and doubt.
When the negative language of risk is contrasted against the positive expectations
of improved prognosis, promises of better medical management, and maximised
outcomes for mother and child, involvement in screening appears an obvious route
to follow (Lippman, 1991). Conventionally, mothers over 35 years old89F
90 have been
targeted automatically as ‘high risk’, an arbitrary cut off point determined as the
point at which the numerical risk of miscarriage through amniocentesis is equivalent
to the population based statistical chance of having a child with Down syndrome.
However, with the more recent advent and routinisation of the non-invasive nuchal
translucency scan, coupled with the knowledge that most children with disabilities
are born to ‘low’ risk mothers’ younger than 35 years of age, there is a rising chorus
amidst practitioners to lower the bar and encourage all women to undergo predictive
screening, as all are theoretically at some risk (Harris et al., 2004; Kuppermann,
Goldberg, Nease, & Washington, 1999; Kuppermann & Norton, 2005). The
motivation to intensify and expand screening protocols has been embraced in some
quarters of Queensland Health, with all women attending the major tertiary
maternity hospital in Brisbane now being offered nuchal translucency. Increasingly
younger women are being routinely invited to consider their risk status, an invitation
which encourages compliance with ‘risk lowering behaviours’, such as accepting
more testing (Lippmann, 1991, 1999).
Heightened risk awareness with its attendant promise of control is simultaneously
threatening and relieving. Skolbekken (1995) argues that a troubling consequence of
increased surveillance and quantification of risk in health care is that our collective
expectations about the where the locus of control in managing these risks lies has
been fundamentally distorted. He explains:
90 Anecdotally, there seems to be a downward pressure on the age at which a woman is categorised ‘high risk’. Classified by RANZCOG as above 38 years old, accepted clinical practice now defines women over 35 years old as high risk, although some women report younger categorisation, such as Danielle. This potential trend was also recorded by Tankard-Reist, (2005).
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‘The risk acceptance that is internalised in a fatalistic attitude to these
matters is being replaced by an ideology whose primary goal is to gain
control over life and death, where the identification of, and the struggle to
reduce/eliminate risk factors have become activities of considerable
importance and prestige within the health profession.’ (Skolbekken, 1995,
p297).
The misplaced trust in our capacity to control nature referred to above by
Skolbekken (ibid) was picked up by one midwife and a general practitioner who
explained:
People don’t accept that it’s just nature……………the fact that nature does some amazing things is all well and good ………… but nature should not make anything wrong with a baby…but…. not only do we want perfect babies, we want perfect birth, and therefore, we want a perfect child. Midwife 2 I think we’ve planted the idea that the more we offer screening and options for women not to have an imperfect baby, the more we reinforce the idea that they should expect a perfect baby………….and there’s no doubt that that’s behind the litigation of obstetricians for every CP child that’s born . We’re adding to this expectation of a perfect baby and a perfect child and people are confronted with this all the way along. Then they get a child with autism or bad asthma, who’s in hospital three times a year, or ADHD, or just has a really difficult personality….I mean we’re all imperfect, there’s just different types of disability. I just think as a profession, doctors are buying into that, not only buying in but really pushing it…women may go through this process and have a baby that doesn’t have Down syndrome at the end ………have the normal baby…..well that’s great, but what if they strike other things done the track………… but I think if someone had every test and everything was fine, then they went and found, what is really a [comparatively] small problem, I think it can unhinge some people…..because they expected a perfect baby……………so that’s one of my concerns about presenting it as routine, of course you’ll have these tests because they’ll produce a perfect baby. General Practitioner 2
Leanne shared the belief that doing ‘all the right things’ within her control afforded
her some power over the health outcomes of her baby,
I think in the back of my mind I knew it was alright. I was going to classes, yoga and stuff…. I knew the baby didn’t have Downs, I knew I wouldn’t have a natural childbirth, I knew I’d have an emergency Caesar, I knew I’d be drugged up, I had a sixth sense, I knew the baby was fine, but then again it was just a control thing. I just wanted to be as reassured because someone has to be the one. And I didn’t want to be. I did all the right things in my pregnancy. Eating properly, going to classes, yoga, aqua stuff and all that. Leanne
Realistically, as expressed by the two practitioners above, much of health care lies
beyond our control. Certainly there are instances where the ability to control risk
factors may contribute to preventative medicine with its protective benefits in some
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realms, such as coronary care, for example, where ‘high risk’ individual behaviours
such as smoking or diet are identified as impacting on the likelihood of disease. In
that case a person has some influence or choice over whether they continue to smoke
or to adopt a healthy diet, to proactively lower their risk in light of the clearly
documented health risks. However, even that well established population based
probabilistic link will not tell a particular individual what their personal risk is in the
multifactorial matrix of chance.
Additionally, in prenatal screening, the ‘risk’ of abnormality in a foetus is assessed
through prenatal screening after conception, when the genetic mould, and thus health
trajectory, of the child is largely established and unchangeable. While there are other
statistical risk factors in pregnancy associated with the mother such as increased age
(though evidence on paternal age90F
91 is scant and conspicuously absent from such
calculations), diet, substance abuse, folic acid intake, or exposure to teratogenic
substances, for women, the most commonly cited risk of having a child with a
disability is that of age, something over which a woman has no control by the time
they are pregnant. Hence, for these women, the only way to moderate or quantify
their individual risk status, for what it is worth, is by engaging in the pre-approved
screening provided. Age was cited as a factor by several mothers. Terri, who
described herself as ‘over the hill’ at 38 years old explained,
I guess because I was a bit older, there were questions asked and it was almost assumed that there were certain things I should do. I was asked quite a few times whether I wanted these tests done. I guess being older, I was 38, because I had gone over the 35 ‘hill’, over the hill [laughs], a lot of the doctors and nurses who saw me were saying ‘what sort of tests would you like - we need to be careful.’ Terri
Danielle whose ‘advanced maternal age’ of 31 was given as a risk factor described:
He started saying things like because of my age…..I was over 30 [Danielle was 31], that was another indicator of high risk...…I just didn’t expect that there would be anything wrong…..I had two previous uneventful pregnancies and it wasn’t as though I was 38 or 39………….I was relatively young……..to be having my third child……….I never felt that I should feel at risk……………..Danielle
91 Yang et al, (2007, p.696) conclude that ‘advanced paternal age was associated with increased risks of heart defects, tracheo-oesophageal fistulaoesophageal atresia, other musculoskeletal/integumental anomalies, Down's syndrome and other chromosomal anomalies.’
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Finally Mary, who at 29 had not considered the possibility of finding herself in the
‘high risk’ category recalled: Before the test we had never even discussed it hadn’t even entered our minds……………it didn’t occur to us that we could be in this group where something could be wrong……..and hadn’t even crossed my mind………Mary
One General Practitioner, who was also an ‘older’ mother, discussed her feelings of
being subject to the heightened presumptions of risk for the over 35 year olds. Even
armed with her considerable medical knowledge, she made the telling remark,
There’s so much more press about it out there now, and particularly, I can tell you as a mother who had gone through two pregnancies as a mother over 37 for one of them, there’s a lot said about it and it almost………………It almost feels like it’s inevitable if your older. I was 38, almost 39 with [daughter]; it almost feels inevitable that you’ll have a baby with Down syndrome from all the stuff you hear. General Practitioner 2
However, these risk factors referred to throughout these conversations, presented
unproblematically as numbers and ratios are determined on abstracted, population
based statistical analysis which have little predictive impact or relevance for the
individual person per se, a point articulated by West and Bramwell (2006, p.62):
‘If we accept the premise that identification of these foetal anomalies is
desirable, then screening can be seen to have benefits at a population level.
However, this is not the same as having benefit for individual mothers and
families’.
Yet, there is an abundance of research suggesting that this preferred mode of
communicating risk in health care is not well understood by either patients or
practitioners (Heyman et al., 2006), and its presumed relevance to the individual
may be grossly overvalued. It is to the problematics of ‘probabilisation’ in the risk
discourse of health care that we will now turn.
Probability and Risk Perception
Prenatal screening results are typically communicated in terms of population based
statistical probabilities and ratios, presented as ‘risk factors’ using a statistical
language which presumes an ‘abstract mathematical universe’ (West & Bramwell,
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2006, p.65). However, the quantification of risk factors requires first that we define
‘normal’ in advance, as Olin-Lauritzen and Sachs (2001, p.513) explain:
‘A system of figures and values forms a pattern of normality for the body. If
you can decide in advance what is normal and expected then you can
normalise, and through that, also exert power’.
In defining normality, the boundaries and limits of abnormality are also defined.
Hence, population-based norms are set against which individuals may be similarly
measured and compared in a self perpetuating system which flows logically from the
premise of surveillance medicine (Heyman et al., 2006; Olin Lauritzen & Sachs,
2001, p.513). The social construction of risk is intimately bound to the preferred and
available tools of mathematical and statistical modelling, the same tools which then
probabilise and pathologise individual patients. Consequently, risks that cannot be
quantified in the culturally sanctioned way remain unspoken (West & Bramwell,
2006), resulting in selective exposure only to those risks that can be measured
(Liamputtong, Halliday, Warren, Watson, & Bell, 2003). Hence, the risk concerns
raised apply to a limited smorgasbord of potentialities.
As risk factors are based on broad population data, their significance when
extrapolated to the individual is unclear as Olin Lauritzen and Sachs (2001, p.498)
explain:
‘as risk is calculated on an aggregate level and belongs to the world of
probability, transformation of risk appraisals to the level of the individual
and the understanding of one’s own health is, of necessity, difficult’.
While clinicians routinely and unproblematically present the concept of risk as a
population-based number, Getz (2003, p. 2052) points out, ‘to the individual
pregnant woman, the population base is one, and a risk of one in one hundred
means she can be the one’. The crucial piece of information that no risk factor can
ever determine, and a theme that reverberated strongly through the accounts offered
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by this cohort of mothers, is whether ‘I’ am, indeed, that one. As Shelford candidly
notes in reflecting on her own experience with cancer:
‘The information that I want is not that 1 in 10 patients will benefit, but
whether I am that one. As that information is unavailable, the evidence
seems to be meaningless to me as an individual, while obviously being
helpful on a population basis to determine best practice’ (Shelford, 2003,
p.757).
Within the mothers’ cohort Leanne’s narrative strongly centred on the theme of
being ‘the one’. Although her age adjusted risk from nuchal translucency was a low
1:1500, the prospect that she could be ‘the one’ extensively shaped her attitudes and
choices with respect to the screening she pursued. Highlighting the individual focus
of such risk factors, the problematic number for Leanne was not the 1500, but rather
the 1. Shelford (2003, p.757) continues her challenge of risk directed medicine
suggesting that statistical modelling has eroded the quality of the particular patient
care, further musing ‘whether we haven’t all been bamboozled in to believing that
statistics and evidence are really relevant in our care of the individual
patient’(ibid). Perhaps, as West and Bramwell (2006, p.64) suggest, people more
realistically approach such decisions on a 50-50 basis, in that they either do, or do
not, have the condition in question, challenging the presumption that people act
rationally upon the mathematical constructs before them. Calman (2002, p.161) also
questions the role of probability in decision making, noting that if rationality based,
quantified, probabilistic risk factors played any role in shaping behaviour, 25% of
the United Kingdom’s population would not continue to smoke. Clearly, rationality,
ratios, and statistics alone do not fully dictate individual risk perception.
The probabilistic language of screening is largely foreign to patients, and there is
strong evidence to suggest that practitioners, too, struggle with the clinical meaning
of these abstract statistical concepts as applied to individual patient care, often
displaying poor understanding of probability and commonly overestimating risk
(Ghosh, 2004). Furthermore, the inherently ‘elastic’ quality and language of risk
makes the task of communication complex and fraught as individuals may interpret
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identical numbers in different ways (Edwards, Elwyn, Unigwe, & Hood, 2003).
Confusion about risk and varying perceptions were certainly evident amongst this
group of mothers:
When they said the risk was what it was, we weren’t particularly perturbed….we went, oh well, 1:74 that’s not so bad…… and then they told us what the ‘normal’ risk was, and we thought OK, it is a little bit of a concern……..Penny
Similarly Terri explained, I had a 1:500 chance of having a baby with Down syndrome….It was presented as high risk; definitely, they said “it’s a high risk”. I had 3 separate doctors ring me from XX hospital, I believe they were registrars, I had never spoken to any of them before, and they all said that to me………Terri
Although the population-based statistical risk of having a child with Down
syndrome at Terri’s age of 38 years old is 1:190 91F
92, and Terri’s relative risk had
significantly decreased to 1:500, she was still categorised as high risk, and felt a
sense of urgency, pressure, anxiety and pending doom. Surprised to find herself in a
high risk category, Terri continued:
In the past I had never considered it. I think because all the medical professional people were saying you need to this and that, it was really brought to the fore…… I would never even have thought of that……Terri
The complexities of conveying these statistical nuances, which are selectively
interpreted, make the task of risk communication fraught with difficulty. Yet as
Helen (2002, p.126) suggest, the risk discourse in pregnancy may invite practitioners
to distance themselves to the ‘technical’ realm only, unfairly placing the whole
ethical burden on the mother. The following practitioner comments convey the
difficulties of risk communication,
[E: Do you think women have a good understanding of risk?] No, no… no…..Not at all. …………..particularly if we find a risk that we consider to be high……………Midwife 2
An objective view of risk is difficult for any person to perceive and it is in fact the subjective view that matters and guides patient choice – is it high risk for them? ….. Obviously with any scan, any variance of normal will make a person anxious, absolutely and I certainly think that it’s the variants of normal that are actually normal that create the greatest anxiety. ….I think it depends on the degree of the abnormality as to the amount of anxiety that gets created…but it is certainly I think, it is almost certainly a shock to a person to find any abnormality, instead of the other way around which would be more realistic. Obstetrician
92 http://www.wolfson.qmul.ac.uk/epm/screening/calcrisk.shtml. Accessed 14th Feb, 2006.
230
Probably what the risk means is a bit confusing, because what they know, why they’re having the scan, the risk 1:60 or 1:900 can mean different things to different people….we’ve had women who have had a risk of 1:600 who say, oh my goodness that’s very high I want to have an amniocentesis……….and others with a risk of 1:12 saying, well I have an 11:12 chance of being OK……..so, it vastly depends on how that woman perceives that risk. Midwife 1
While the following genetic counsellor adopted sound educational strategies in
conveying risk, her observation that shock may affect capacity to understand, and
her acknowledgement that this unfamiliar, and, for some, difficult information may
take several visits and considerable time to sink in, further reinforces that routine
and immediate screening is ethically and educationally inappropriate.
Risk is the perspective of what someone perceives as high risk or low risk …. We use numbers and words……..such as there’s a 1:200 chance that this pregnancy will discontinue because of CVS or amnio, the miscarriage risk – how do you perceive that, is it high or low?......so there’s 199 chances in 200 that there won’t be a problem…we look at both sides of it…….so we put it as a population risk, this risk, how do they feel, etc, we use numbers and words and ask them to express how they perceive the risk….is it a high number or low number for them……[but]….they are usually so anxious and frightened, shocked so their understanding is probably pretty low….. I think they need to have graphics or visual imagery as well as words and I think they need to think about it over a few days and they need to have their partner with them and they may need to hear it a couple of times…. Genetic Counsellor 1
The other genetic counsellor remarked:
I think it’s really hard to prepare people because that grey area will be different for different people….a lot of the time…….there’s no doubt it creates a lot of anxiety ….there are a few examples in my head where someone got a result of 1:250 which isn’t low officially, it’s just within the high risk category….it may actually not be a terrible risk when you break down the nitty gritty of the figures……….and it depends what risk they’ve had before…there are some people who will look at that and feel massive anxiety…………but because the risk of the next option is roughly equivalent, that’s a very difficult decision and for some people they can hardly make that decision…it’s so hard ….its too hard …………..and I don’t know if you can ever really prepare people for that……Genetic Counsellor 2.
Liamputtong et al’s (2003) study exploring why women rejected screening revealed
that the subjective perceptions of risk held by women often differed from those held
by health care professionals. Women weighted the risk of anxiety more heavily than
their practitioners did (ibid, p.101). Conflicting representations of what constitutes a
‘risk’ further complicated interpretation of risk for mothers and practitioners. For
example, the risk for a woman over thirty five years old of having a child with
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Down syndrome is 1 in 38092F
93 , presented by practitioners as ‘high risk’. However,
the risk of miscarriage while undergoing amniocentesis to diagnose this condition is
1 in 200 (Alfirevic, 2003), a numerically higher risk, but one that is presented as a
‘low risk’ procedure. For women trying to grapple with these concepts, the
malleable and selective interpretations of ‘risk’, often coupled with poor scientific or
health literacy in general (Kendig, 2006), may present a barrier to forming secure
understandings.
Risk interpretation is further influenced by how undesirable the particular outcome
is perceived, with expectations of future burden varying widely (Edwards et al.,
2003). Thus, perceptions of what life with a disability entails lie at the heart of risk
perception. Some women on receiving a diagnosis of Down syndrome in their child
felt relieved that this was a condition compatible with life, in which their child could
lead a relatively meaningful, though supported life (Bridle, 2004). Others, such as
the couple described earlier by one midwife, on receiving a diagnosis of cleft palate
which may be viewed as a more minor disability, and one of the few ‘fixable’
conditions detected with no intellectual impairment, elect termination. Clearly
differing interpretations of social desirability influence how such risk factors are
constructed.
Lack of scientific or mathematical literacy was raised by several practitioners as a
contributory factor in the low levels of risk understandings displayed. In addition to
the poor knowledge of the critical clinical difference between ‘screening’ and
‘diagnosing’, a lack of familiarity with medical terminologies, and a fragile grasp of
the statistical concept and language of risk, also came into play as the following
practitioners explain:
Even those words….. ‘nuchal translucency’ is not something that’s been around for a long time, there’s not a lot of knowledge, and it’s not something their mothers can tell them about, because they didn’t have it. Amongst their peers, if they know anyone who’s recently been pregnant, they might find information about what is involved. Clinical Geneticist Often the information comes as a shock so they can’t really deal with it - they don’t understand too much unless it’s a lethal condition and the baby, it’s just a matter of time
93 http://www.wolfson.qmul.ac.uk/epm/screening/calcrisk.shtml
232
before the baby will die, they tend to understand, like black and white. The subtleties are often lost. Genetic Counsellor 1 [Risk] ….it’s certainly not something that everyone understands …not at all……without really sitting down with them , I think it may get brushed over and assumed that a person had …….but it is hard, ….if it’s high you might throw in the risk of miscarriage and there’s just figures flying at them…it’s not easy. Genetic Counsellor 2
While the vocabulary used by the following GP in explaining risk was perhaps
intentionally chosen to convey an expert level of clinical competency to an
interested researcher, if such language was used in a clinical consultation, this too
could become a potentially alienating and isolating barrier for the uninitiated. I would, in broad terms, discuss the validity matrices that are used, the combination of both imaging and serology being used to form a matrix. I would discuss the fact that these are predictive in nature but not conclusive… General Practitioner 1
Confusion about risk was apparent in Leanne’s account, although, perhaps, she paid
scant attention to the details knowing she would pursue all available testing
regardless: After the 12 week scan the odds came back at 1:1200 or 1:1500. The obstetrician was like well, why do you want to have it done and I said it’s because of my colleague; she was ‘that one’. Then she said OK if that’s what you want we’ll have it done. I think it was 1:1500; the odds went up [after amniocentesis] to 1:3000. [E: So before amniocentesis they were lower?] Yes [E: What were they before?] 1:1500….. Then they went up to 1:3000 [E: So they were 1:1500, then they went to 1:3000] Yes [E: So that is actually a lower risk, the risk went down?] Yes [surprised]… I suppose it is …..But then….. I knew that someone has to be ‘the one’ ……and I didn’t want to be. Leanne
Later in the interview Leanne described herself as ‘a statistics person’, I’m more a statistics person so once I had the numbers, once I knew the averages ….yeah………I’m a statistics person….. Which when you think about that now you could ask why wasn’t I happy with the 1:3000? But the argument is…… I know ‘the one’.
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In conclusion, presenting risk as a reductionist, probabilistic, and purely numerical
decision is ultimately inappropriate, because as Olin-Lauritzen and Sachs (2001)
note, while the concept of risk is linear, bodies are complex and multifactorial, never
linear. Linear concepts, such as statistical risk, are therefore an inappropriate
platform from which to assess individual health threat as they fail to capture the
subjective notions of desirability that frame risk perception. As population based
measures, the relevance of retrospectively calculated, statistical risk ratios to the
individual is challenged by West and Bramwell (2006, p.61) who conclude that:
‘The implications may be that probabilistic screening information does not
provide useable information and, therefore, does not promote informed
choice. Tests may also fail to offer reassurance, or offer false reassurance’.
While the relevance of such data at a population level is clearly important in terms
of resource planning and predicting community health trends, their significance to
the individual seems overstated, although currently the presumed social benefits
have eclipsed and taken precedence over the individual (Heyman et al., 2006,
p.2370). Additionally, probability is such a poorly understood, poorly conveyed, and
reductionist concept that its persistent incorporation into health communication is
puzzling (ibid). Yet, the commonly proffered concept of risk as a function of logic
and mathematics continues to dominate medical conversation, rather than being one
part of multiple relevant considerations. The strong intuitive and emotional
components that play a substantial guiding role in risk assessment are frequently
overlooked (Slovic, Finucane, Peters, & MacGregor, 2004). However, if we desire
to manage risk effectively, the rationalist view needs to be tempered and softened
(ibid). Runciman (2002, p.113) explains:
‘This is the problem that faces anyone who tries to rationalise and re-order
our responses to risk: the quality of the danger always counts for more than
the quantity. We can know all the figures in the world, have them neatly set
out for us on easy–to–read labels, but everything will still depend on the
ways in which we choose to imagine disaster to strike’.
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Thus there is a need to inject some ‘proportionality’ into the risk messages conveyed
which ‘underscore[s] the ethical importance to balance the level of fear against the
level of risk’ (Solomon, 2005, p.44).
Anxiety and the Psychological Impact of Risk
‘Risk’ has become a central and inescapable concept in prenatal screening, and once
the spectre of risk is raised, anxiety almost inevitably follows. The personalisation of
risk (‘am I the one?’), superimposed onto the tension between security, insecurity,
reassurance, distress, and the opposing possibilities of vulnerability and control that
screening invokes may create a heightened perception of looming crisis. For many
women it is claimed this tension triggers compliance with testing regimes (Getz &
Kirkengen, 2003; Lippman, 1999a, 1999b). However, as an unquantifiable
emotional response, the anxiety experienced by women is rarely considered
admissible in the logical risk calculations favoured. The consenting process
predominantly focuses on procedural or technical information relating to potential
physical harms (Bernhardt et al., 1998), while the equally ethically relevant
psychological harms of unwarranted anxiety, increased vulnerability, and emotional
wounding, seem commonly overlooked.
That prenatal screening could potentially prompt anxiety in women seems a
predictable outcome, yet, the prospective immediate or ongoing psychological
consequences have received relatively little attention (Kowalcek et al., 2002) and the
limited research that does exist paints a contradictory picture. A number of studies
report generally positive effects ranging from little, no, or reduced anxiety (Kaiser
et al., 2002; Kleinveld et al., 2006; Whynes, 2002), while others note depressive
reactions ranging from short term and mild, to ongoing and extensive anxiety (Goel
et al., 1998; Kowalcek et al., 2002; Watson et al., 2003). Leithner et al (2006,
p.244) make the further observation that the level of anxiety experienced by women
is frequently underestimated by clinical staff.
Of those citing positive effects or no ‘significant’ lasting distress, Kleinveld et al
(2006, p.360) suggests that anxiety is not inevitably a bad thing, but rather an
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appropriate and necessary psychological response to an actual threat, and thus
anxiety illustrates an appropriate level of engagement in the process. Whynes (2002)
further reports uncritical and unproblematic acceptance of screening regimes,
restating the potential soothing effect that the reassurance of ‘good’ results from
prenatal screening provides and defending screening as a positive bonding
opportunity for mother and child. As background levels of anxiety may be
heightened during pregnancy, some of the authors above present screening primarily
as a positive opportunity to reduce existing anxiety. However, as previously
discussed, any reassurance gleaned may be simply an artefact of screening. It is
certainly not a guaranteed outcome; hence, justification on these grounds alone is
misleading.
Conversely, others have observed that the psychological responses of different
women to the various forms of prenatal screening commonly include ‘considerable
short term anxiety’ (Watson et al., 2003) , acute distress akin to a ‘major depressive
episode’ (Leithner et al., 2006), ‘a depressive reaction’ (Kowalcek et al., 2002), and
‘serious psychological harm’ (Goel et al., 1998). While West and Bramwell (2006,
p.62) were referring specifically to maternal serum screening when they concluded
that ‘information generated by the serum screening test is not information most
people can understand, use to make decisions, or that can alleviate their anxiety’, as
discussed earlier, the commitment to convey risk of all kinds in narrow probabilistic
terms pervades the discourse of all screening, thus, this comment may equally apply
more widely than just the serum screen. While short term anxiety passes for some
(Watson et al., 2003), other studies note a consequential anxiety that may last well
beyond the immediate period of testing with Hall et al (2000) observing negative
psychological effects from a false negative result continuing for up to six years.
Of the mothers in this cohort, a broad spectrum of anxiety levels and responses
were represented. Some, like Penny, disengaged from the risk discourse to alleviate
their anxiety: I think we just fobbed it off to be honest, I don’t remember wondering or pondering if this would be a child with some abnormality…for the rest of the pregnancy…in saying that though [daughter] didn’t move much, so at night I would sit and poke my stomach and say “are you OK in there”, just to get her to wriggle…I don’t think I was thinking about the result…. that had passed……….Penny
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Elizabeth proactively rejected screening from the outset and never personalised the
risk predictions. She explained, I had said, no I didn’t want it because I didn’t want a pregnancy that for the next 20 or so weeks where I was told I could be high risk and it turns out to be nothing. She [the physician] was supportive of that, she said, OK, you’ve done your reading. Elizabeth
However, for others, the stress and worry described was still evident and raw up to
two years after the event as Mary describes,
After the high risk result from nuchal translucency was given]…I was a basket case…I didn’t know what to do….who to talk to ….. It had only just been developed, it was only just out there…..and there was really no-one to talk to. [E: Did those doubts still linger after the amnio result was clear?] Yes….they still lingered, but not as heavily…..the doubt didn’t go until he was born. Mary
Contrasting this experience with her first pregnancy four years earlier, Mary
explained how her perceptions of doubt and risk had irrevocably changed,
With [my eldest] it was just, I was pregnant, it was great…………I had the usual scan at 18 weeks, but with the second, it was harder because I had miscarried at 10 weeks with the previous pregnancy, those first 10 weeks were the hardest, and then 2 weeks later they said……..It could be a Downs baby……..we’ll just wait another 5 weeks to find out………..so that was one of the worst pregnancies that I could have endured, in my mind………….The first 12 weeks with my third were sort of “Holy Crap” I’m pregnant again and I’m an idiot……..for me it was “Oh no …I have to go through all this again….all the stress”……I loved that first pregnancy a hell of a lot more……….because there was no stress and no worry……………everything was good………..you’d have an appointment every few weeks, everything was fine and we moved on………there was no doubt…Mary.
Terri became caught in limbo between rejecting further testing on the grounds that it
was ‘too risky’, while still harbouring grave reservations and concerns about the
health and future of her child, describing herself as ‘almost depressed’,
It was very hard for a while, I couldn’t put it out of my mind, but once I got to the end, I was at a stage, like most women , I just wanted it to be over, so there was a period of months where, almost 3 months where I think I was almost depressed….. After I did have him, I was looking at him through the crib, I was in a wheelchair, I was looking from an unusual angle and the crib had distorted his face, and I just thought, “Has no-one else noticed that?” It wasn’t until an hour later when they brought him round that I could see he wasn’t Down syndrome, but yes…………..for an hour I thought …yes…………..in the past I had never considered it. I think because all the medical professional people were saying you need to this and that, it was really brought to the fore……Terri
Similarly, Danielle rejected the risk of further testing, and spent the remainder of her
pregnancy in emotional turmoil, I spent the next 6 months basically not entirely sure………..and even when she was born ….I had seen a lot of babies with syndromes………….I knew when she came out she didn’t look like a syndrome baby………but I still had to check with the paediatrician………it
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wasn’t until then that I realised how much it had been worrying me for the last 6 months………………..even although we told ourselves it was probably fine, I was still quite worried………….that was pretty hard…..Danielle
While not all women experience anxiety, and of the seven mothers in this cohort,
Leanne’s proactive pursuit of screening left her positively reassured, Danielle’s
description of the impact of this experience warrants inclusion as it captures her
deep emotional wounding and fracturing experienced after being told of the soft
markers on her child’s ultrasound scan. Danielle further revealed that ‘even now’,
two years after her daughter’s birth, the doubt lingers.
Because ………..the complete sadness of it………..it was like mourning………having a grieving period for a baby that was inside you …….growing…… but you didn’t ………….[sighs]…………I guess just that loss of control and loss of hope that you have……………..for 18 weeks it had been a joyful period………and then suddenly it’s put to a screeching halt it was just……………it was just horrendous………….I wouldn’t wish it on anybody…………….no sleep……….I couldn’t concentrate, couldn’t focus…on anything……it was really terrible…………I was just………just ………yeah……………it completely shuts you down…………you have no control over it………………..for us ….we were facing the completely hideous decision of aborting this baby or even worse…………………or having a baby with Down syndrome and looking at the ramifications for that child and for our existing children………….for the rest of our lives……………….or just wait till she was born and deal with it then…………Even now I look at her sometimes and I think I wonder if there’s a lag over problem………not that she’s developmentally delayed in any way………but that’s still in the back of your mind…………….I don’t worry about it, its just a niggle that’s there…………it was just hideous………….horrible, horrible , horrible………..[sighs]…
[E: Can you talk about the joyfulness of your pregnancy?] [pause]……...it…….disappeared,……..just…….disappeared,…………completely disappeared…………………………….I wouldn’t say it never returned……but from then on it was certainly tinged with …………..not sadness…………but fear and uncertainty…………that in my mind……………..my husband says that when we left that surgery, the impression was that the obstetrician had said it was 100% sure everything was fine, but in my mind, I left that surgery with him saying unless you do amnio I can’t be 100%, but I’m pretty sure……….like 98%....................and for me that 2 % was like………phew……….should I do the amnio………but I wasn’t going to do it……..yeah……………………it was still a joy to be having the baby……….it was an event that we had joyful anticipation for…………but certainly it was from then on it was tinged with worry and fear………that something was wrong. I was a lot less blasé, any differences I would be very concerned about….Danielle
Perhaps surprisingly, Kowalcek et al (2002) concluded that the depth of stress
experienced was not related to the invasiveness of the procedure, and that indeed,
those undergoing a non-invasive ultrasound had higher depression levels than those
undergoing invasive amniocentesis or CVS. Leithner et al (2006, p.245) similarly
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noted that regardless of the invasiveness of the test, or the confirmed presence of a
fetal anomaly, all women suffered ‘acute distress’,
‘we found that all women in our sample experienced acute distress, not only
those with proven fetal malformations, genetic disorders or intrauterine fetal
death, but also those referred with the diagnosis of a sonographic sign.
Given the fact that ultrasound is not associated with a painful experience or
the possibility of fetal damage, we assume that the perceived stress derives
from the fear of an adverse diagnosis and its consequences’.
As the tacit and unconscious possibility of anomaly becomes an intrusive and
stressful probability, the unspoken fears come to the foreground creating the
depressive moods observed in women prior to undergoing prenatal testing
(Kowalcek et al., 2002).
Given the multitude of factors that determine risk interpretation, prediction of how
different women respond to ‘risk’ is highly fluid and thus notoriously difficult to pin
down. Risk perception, and the subsequent anxiety that flows from it, is contingent
upon each individual’s unique life experience, and thus varies with time, culture,
history and the contextual realities of each woman’s life (Rapp, 2000). Perceptions
are subjective, moulded by the particular context at a particular point in time, and
particular previous experience as Anne remarked:
I think another part of that was that in my experience, I had had a child with an abnormality, so realising how real that can be, if you have never experienced that, you may think well that’s a world away, that doesn’t touch me, but when you’ve experienced it you realise that It can touch you, it can touch anyone, nobody is buffeted from that ……it’s a real part of life, a real part of having children. Anne
As noted previously by Liamputtong (2003, p.101), women’s perception of risk may
vary from their practitioners. Additionally, the risk perceptions of practitioners may
be significantly skewed working in a tertiary care hospital specialising in birth
anomalies in which the prevalence, immediacy, and likelihood of such an outcome
may become exaggerated. However, physicians must balance their professional and
legal obligation to inform about remote but potentially serious outcomes, while not
unduly causing needless anxiety or giving false reassurance. Perhaps, the final word
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on risk, anxiety, and harm belongs to Terri who recognised the vulnerability of her
situation, and implored that more gentle and considered approaches be taken with
women in this potentially susceptible place. Pregnancy, well it’s a vulnerable time, and this pregnancy was vulnerable for me, I’m sure there are lots of women in the same boat…. We really need to tread more lightly. Terri
Yet as Hoffmaster (2006, p.41) laments, ‘vulnerability doesn’t mean much to
morality because, in part it is missing from moral philosophy, yet it is our very
vulnerability that creates the need for morality’. Attending to the moral and ethical
dimensions of prenatal screening within a vulnerable population thus demands more
than calculating and dispensing numerical risk information (Helen, 2002; Olin
Lauritzen & Sachs, 2001).
Chapter Summary
The personal constraints impacting upon personal behaviour and capacity to exercise
informed choice include the need to be reassured, often articulated as the ‘desire to
know’. Such motivations reveal a presumption that there is something valuable to
know, that all knowledge is valuable, and that such knowledge can be readily
accessed through the culturally sanctioned practice of prenatal screening. Most of
the women and many of the practitioners of this cohort cited the desire for
reassurance as the most common motivating factor driving the increasing use of
prenatal screening. However, need to be reassured is prefigured by an existing
anxiety; a heightened level of risk awareness that Lippman (1991) argued was
largely created by the prospect of testing itself. The negative language of risk and
presumptions of anomaly that frame the offer to test may create, therefore, a self-
perpetuating dynamic of intervention.
Further evidence exists in the literature that statistical measures of probability and
individual risk in which such offers are framed are generally poorly understood by
patients, while the presumed relevance of population based figures to the individual
are overstated. While such statistical representations may be meaningful for
population-based health management, they do not assist the individual woman in
answering the critical question to her of whether she is that ‘one’. The inability to
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make meaning of these ratios and probabilities thus represents a personal constraint
to the giving of informed consent. The increased levels of anxiety expressed by
several members of the mothers’ cohort illustrate the harmful and ongoing
psychological impact of risk. These (largely avoidable) harms, many of which flow
from lack of understanding as a consequence of ill-informedness, or under-
informedness represent ethical harms, harms which may be minimised through
reflecting upon the shortcomings of currently accepted protocols and transforming
practice to support women’s ethical decision making.
The three chapters of the following section will explore potential areas of
transformation and highlight future areas of research.
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SECTION C
TRANSFORMING PRACTICE: FACILITATING WOMEN’S ETHICAL
CHOICES
The fourth, and final, stage of this research explores the critical role of educational
experiences and the conditions of learning necessary in promoting the ethical
standard of informed consent, above the minimal legal requirement of information
disclosure. These will be considered in Chapter Nine. The development of context
appropriate, andragogically and ontologically sound responses to the learning
process emerge from an awareness of educational philosophy and practice. It is these
critical educational precursors which support the necessary knowledge development
required to give ‘informed’ consent where transformational possibilities lie.
Recognising the intertwined nature of individual agency within institutional
frameworks and norms, Chapter Ten continues the theme of transformation,
considering the joint transformation of institutions and the individuals who function
within them. Chapter Eleven provides a summary of the outcomes of this research
and makes some suggestions for future areas of inquiry.
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CHAPTER 9
PATIENT EDUCATION IN CLINICAL CARE
Introduction
The preceding Section highlighted that the poor levels of informed consent observed
in studies overseas were likewise apparent in the accounts of at least five, and
possibly six, of the seven mothers interviewed for this study. Additionally, the
observations made by practitioners further suggests that low levels of understanding
and informed consent are a common scenario for women undergoing prenatal
screening in their clinical care. Numerous philosophical, institutional, social, and
personal constraints were identified in this research in line with the research
outcomes noted elsewhere. Additional factors revealed which are specific to the
local context included the segmented service delivery models of care which create
blurred accountability for ‘informing’ amongst practitioners coupled with the
particular legal ramifications of termination in Queensland which hinder
transparency in practice and infiltrate policy. Ineffective data collection and analysis
further inhibit evidence-based reflections on protocols of care. Collectively, these
factors may exert a significant impact upon practitioner and patient capacity to
jointly achieve the necessary levels of reflective understanding prior to screening
required by ethically robust informed consent.
If the experiences of this cohort are typical, and this may be determined by further
research, there is potential scope for local improvement in how women and their
carers are supported in achieving the ethical standard and safeguard of informed
consent. While many of these factors are firmly embedded in the wider social,
technical, and cultural context of prenatal screening as explored in Section B,
collectively, the experiences of this cohort suggest a failure of educational processes
prior to testing. The lack of prior education expressed by the participants of this
study was also prevalent in the existing literature. Therefore, an area of potential
transformation may be that of strengthening clinical approaches to patient and
practitioner education.
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As previously suggested, the crucial ethical difference between consent and
‘informed’ consent is the incorporation of some form of education or learning
opportunity, with the transfer and construction of the appropriate knowledge and
understanding prior to accepting any medical intervention. ‘Informed consent’ is
thus ideally given from a position of understanding after careful reflection and
deliberation of the central facts relevant to each individual. Thus, the moral integrity
of informed consent in clinical care is inextricably linked to patient education.
Accordingly, a vital ethical requirement of the patient-health carer relationship is
one of a mutual teaching and learning partnership, in addition to the obvious
therapeutic partnership. However, current patient education protocols show little
awareness, and incorporation, of established learning theory or practice, and do not
explicitly acknowledge the ethical importance of patient education.
An important way to support informed consent would be, therefore, to incorporate
the critical insights and understandings offered by educational theory and
philosophy into the informed consent process in clinical care. With this fundamental
link between ethical practice and patient education in mind, it is helpful to explore
some foundational insights offered by educational theory, research, and practice
before discussing how these insights may be incorporated into clinical care. While
these insights will be applied in the context of prenatal screening, the ethical
importance of patient education is relevant across all forms of medical intervention.
Hence, the educational insights offered in this chapter may apply widely beyond the
narrow context considered here.
From Information to Understanding: the Bridge of Learning
‘Where is the wisdom we have lost in knowledge?
Where is the knowledge we have lost in information?’
(Elliot, 1962, p.107)
As the gaining of knowledge is crucial to becoming ‘informed’, a change in strategy
that acknowledges the ethical importance of patient education and incorporates a
transformative learning experience into current clinical practice regimes may
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provide a successful vector for change. The insightful observation by T.S. Elliot
(ibid) above suggests the need to move beyond the mere delivery of ‘information’,
to foster the ethically required knowledge, understanding and, perhaps, wisdom. In
recent decades educationalists have moved beyond stimulus-response, transmissive
or ‘mechanistic’ models of learning towards a more holistic, interactive, and
responsive model of ‘learner centred’ education. Knowles, Holton and Swanson
(1998, p.35) contend that this shift is not new, rather it reflects an approach to
learning as a ‘process of mental inquiry, not passive reception of transmitted
content’, anchored to a pre-modern view of education as practised by revered
teachers of ancient times such as Confucius, Jesus, Aristotle, Socrates and Plato
(ibid).
When applied to the human condition, Reese and Overton (1970) further claim that
the more appropriate holistic view recognises the interactive, interconnected,
evolving and ongoing nature of learning, a process which may not necessarily
progress in a sequential or ‘logical’ manner. This view is further echoed by Bruner
(1991, p.2), who notes,
‘Knowledge growth is not uni-linear or derivational in a logical sense;
mastery of one task does not assure mastery of other tasks that in a formal
sense are governed by the same principles. Knowledge and skill, rather, are
domain specific and, consequently, uneven in their accretion. Principles and
procedures acquired in one domain do not automatically transfer to other
domains’ (Bruner, 1991, p.2) .
Along such a circular, or spiralling, pathway learners revisit prior beliefs,
incorporate past presumptions, and intentionally filter in or out specific information,
often in conflict with the presumed rational importance that such information
represents to others (Bruner, 1991; Reese & Overton, 1970). In the context of
prenatal screening, the presumption that the presence of disability in a foetus is
critical information to be tenaciously pursued, or that the quantification and
disclosure of risk factors is universally meaningful, are clearly not shared by all
parents, as illustrated earlier. Some of the women in this study experienced intense
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pressure, incredulity, or disbelief from practitioners and peers when they expressed
an unwillingness to conform to the expected logical norm, or to accept the presumed
values of their practitioners. The consequence for them was often one of deep
alienation, anger and distress93F
94. A holistic educational orientation embraces the
reality of multiple interpretive and possibly contradictory, layers of embeddedness,
and therefore sits comfortably beside the phenomenological and feminist accounts of
ontology as articulated in Chapter Two. This more responsive educational
framework further resonates with the philosophical orientation of this work.
Furthermore, the holistic and embedded stance recognises that learning, like ethics,
is significantly a social rather than technical process, one which is socially,
culturally, and historically situated (Biggs & Telfer, 1987; Gage & Berliner, 1991;
Knowles, Holton, & Swanson, 2005; Mezirow, 1996).
In the educational literature, learning is widely accepted as a fluid, interconnected,
and multi-step process embedded in time and inextricably linked to previous
learning experiences and existing interpretive filters (Bruner, 1991; Gage &
Berliner, 1991; Knowles, 1990; Knowles et al., 2005; Mezirow, 1991, 1996). The
information-processing model (Figure.2) of learning provides a useful framework
for understanding the key components of learning. These are:-
• paying attention to stimulus or events
• filtering through existing interpretive perception filters
• committing to memory (deep learning), and finally ,
• retrieval of stored knowledge from long term memory
94 See Chapter seven for a fuller exploration of this point.
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Fig.2. Information Processing Model (Adapted from Gage & Berliner, 1991, p.281).
As illustrated in the Information Processing Model, learning is an ongoing process
of refinement and feedback, rather than an episodic event. The administrative event
approach to ‘consenting’ patients has been stridently criticised by Wear (1998), who
argues that the treatment of consent as a minimalist, administrative event rather than
an ongoing and dynamic relational process, has created a major obstacle to realising
the ethical intentions of informed consent. As Wear (1998, p.96) remarks,
‘No one-shot event can be expected to have much success in pursuing such
goals [of actual understanding]……. A process model can verify and
strengthen what an event model cannot’.
When the role of knowledge building or learning is recognised as intrinsic to
‘informed’ consent, it becomes apparent that informed consent must inevitably be
recognised as ongoing since the very nature of knowledge construction upon which
its ethical credentials rest are inseparably bound to an ongoing and dynamic
educational process linking past, present, and future knowledge. Furthermore, within
the context of prenatal screening ethical decisions are made over time as a person
undergoes changes in their emotional, physical, and knowledge status (Press &
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Browner, 1995; Woods & Barrow, 1975). Hence, there is a strong need to open
educationally reflective spaces within institutional frameworks that support ongoing
meaningful dialogue. Significantly, these educational spaces may also be regarded
as open moral spaces (Walker, 1993) where the values, beliefs, and judgements that
guide patient and practitioner behaviour may be subject to critical reflection.
Exploring Adult Learning
The acceptance of education as an embedded and holistic process linked to prior
learning has significantly replaced the outmoded transmissive, episodic, or
compartmentalised view of learning (Daloz, 1986; Gage & Berliner, 1991; Knowles
et al., 2005; Mezirow, 1996). Thus incorporating these critical educational insights
into clinical care could significantly support the realisation of informed consent. A
vital characteristic of patient learning in the context of antenatal care is that all the
participants (patients and practitioners) are adult learners. Much has been written in
the past few decades about the unique features of adult learning. While some
controversy remains as to whether adult learning is significantly different from child
learning, and many commonalities on the continuum of ‘learner centred’ education
are apparent, it is generally accepted that developmental differences, capacities, and
expectations between adults and children do exist (Knowles et al., 2005; O'Brien,
2004; Russell, 2006; Taylor, 1996). These differences would seem to call for
tailored educational strategies.
Perhaps the three most influential scholars writing in the field of adult education are
Malcolm Knowles (1970, 1984, 1989, 1990, 2005) who developed the Adult
Learning Theory drawing on the critical differentiation between andragogy (adult
education) and pedagogy (child education); Jack Mezirow (1991, 1996, 1997, 2000)
who developed the Transformational Learning Theory; and finally Paulo Freire
(1985, 1990, 1993) who proposed the Critical Social Theory which explores the
central role of education and critical reflection in social transformation.
Considering each of these in turn, for Paolo Freire, education is the key to
awakening the critical consciousness to effect social transformation through
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promoting equity and redressing the oppressive elements in society (Freire, 1985).
Thus the focus of Freire’s writing in adult education is informed by the desire to
effect broad societal reform within dominating hierarchical social structures. Such a
framework for understanding adult education thus lies beyond the immediate focus
of this research which is concerned with the clinical education of patients for the
purpose of giving informed consent. While Freire’s work is influential and
insightful, more fitting frameworks exist to respond to the immediate questions of
this project.
The Transformational Learning Theory of Mezirow (1991, 1996, 1997) rejects the
objectivist (detached) paradigm of learning (Mezirow, 1996, p.159) and proposes a
interpretist paradigm which recognises the embedded, social, cultural, and emotional
aspects of learning. Mezirow further differentiates between instrumental learning
(detached, rational) and communicative learning (looking for meaning),
acknowledging the importance of language and communication in providing an
explanation of how people make meaning of their experiences. The capacity to make
meaning, to reframe and successfully identify and challenge pre-existing
assumptions, lies at the heart of Mezirow’s (1991, 1996, 1997) transformational
framework. Within this framework it is claimed that appropriate education may
encourage each individual to become ‘a more autonomous thinker by learning to
negotiate his or her own values, meanings, and purposes rather than to uncritically
act on those of others’ (Mezirow, 1997, p.11), a goal in line with the aims of this
project. Mezirow further endorses a learner-centred model of education in which
teachers are seen as facilitators rather than authorities.
While Mezirow (1991) claims to have advanced the adult education debate beyond
the distinction of Knowles’s (1970) andragogy vs. pedagogy divide through
strengthening the place of critical reflection in the process of making meaning, the
foundational doctrines and ontological premises of both models are not markedly
different. Both acknowledge the embedded nature of meaning and interpretive
frameworks, both are based on building trust and relationship in a learning
partnership, both promote the establishment of common learning goals, both
acknowledge the influence of prior experiences on new learning, both accommodate
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the unique contextual features that shape each encounter, and both advocate the
creation of an environment that nurtures joint collaboration and mutual respect in the
learning process. However, the twelve key propositions Mezirow’s (1996, p.62)
‘emancipatory paradigm’ are not easily transferred into an accessible, practical
educational model within clinical care.
The features which Knowles (1990) claims are specifically characteristics of adult
learning, or andragogy, were substantially defined and developed in the 1970
publication, The Modern Practice of Adult Education (Knowles, 1970). In this work,
clear distinctions between the dominant, child focused ‘pedagogical’ frameworks of
learning and the adult oriented ‘andragogical’ stance were drawn, centred around six
key characteristics of adult learning, characteristics which capture the ontological
coherency and moral significance of education.
For the purposes of this research, we must acknowledge that clinicians in the context
of antenatal care are not seeking to promote Freire’s (1985) broad social reform, nor
are they seeking to transform inherent societal prejudices and inequities. While they
may be seeking to promote informed participation in health care decisions that are in
line with a patient’s individual values and moral frameworks – it is beyond their
brief to transform existing individual interpretive frameworks as proposed by
Mezirow (1996, 1997). Thus, considering the context of this research, Knowles’
Adult Learning model provides the most appropriate and accessible practical
framework for strengthening patient education and understanding in the clinic. For
these reasons, the framework proposed by Knowles will be adopted as a broad
template for educational reform throughout the remainder of this work.
Knowles (1970, 1990) and Knowles et al (2005) argue that pedagogical approaches
to teaching that emerge from consideration of how children learn, promote overly
didactic and transmissive strategies, condemning the learner to a position of
inferiority and submission. As the permissible sources of learning are those which
emanate from the ‘teacher’, pedagogical models limit the knowledge worthy of
pursuit to that which the ‘teacher’ deems as a relevant inclusion. The learning
experiences of the mothers of this cohort certainly reflected an authoritatively
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centred, didactic approach in which the ‘expert’ professional often selectively
transmitted the information which they judged to be important. This view was also
evident in several of the practitioners’ comments shared earlier. As noted previously,
exploration of what knowledge is privileged for discussion or inclusion within
clinical conversations remains largely unchallenged, and such a tacit and accepted
part of the background asymmetrical power dynamics that it often escapes
consideration (Sherwin, 1998). Knowles et al (2005) argue that this authoritative and
instructive approach has been alienating to most adult learners as it fails to resonate
with the developmental capacities and the expectations of equality that independent
adults have come to anticipate in other areas of their lives.
Knowles (1990) claims that a further source of alienation for adults under the
pedagogical model is that full responsibility for what is learned, how it is learned,
when it is learned, and on what criteria it will be judged as successful, are placed
firmly in the hands of the teacher. While this locus of control may be more tolerable
in childhood education - although increasingly child centred educational paradigms
are becoming the norm - the developmental stage of independent adulthood makes
these presumptions potentially isolating for adult learners. As the pedagogical model
potentially relegates the learner to a passive and submissive role, Knowles (ibid)
suggests that the inevitable power imbalance created is grossly inappropriate in
fostering the educational partnership sought between competent adults, a view also
proffered by Mezirow (1996). The key differences identified by Knowles et al
(2005, pp.64-69) between andragogy and pedagogy are defined across six
foundational areas that prefigure how learning is approached. They are:
• The need to know
• The learner’s self concept
• The role of experience
• Readiness to learn
• Orientation to learning
• Motivation to learn
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While Knowles’s work has been critiqued for its loose definition of ‘adulthood’ (a
poor definition that has hindered consistency in research), for the insistence on
describing andragogy as the intangible ‘art’ as well as the ‘science’ of helping adults
learn, and for the claimed lack of empirical evidence to support the assertion that
andragogy provides a superior approach to adult education (Brown, 2006; Rachal,
2002), similar criticisms may equally be levelled at the other dominant educational
frameworks. Meanwhile, the andragogical lens retains its appeal as Rachel (2002,
p.212) notes, ‘the significance of andragogy continues to engage us’, concluding
that ‘perhaps all adult educators would be sympathetic to the view that as much of
the spirit of andragogy should infuse adult learning situations’ (ibid, p.224). Hence
Knowles’s work may be seen as a ‘work in progress’, that is, an approach to adult
learning whose full parameters are still being defined. In its current form, however,
it provides a workable, though not canonical, framework for strengthening patient
education in the clinical context.
Characteristics of Adult Learning
Expanding upon these six criteria, ‘the need to know’ from a pedagogical stance is
determined by the teacher, the teacher decides when, what and how much the
student needs to know. However, from an andragogical perspective, adults must first
be convinced of the worth ‘to them’ of any proposed learning and feel personal
commitment and motivation to learn before they are willing to invest the required
mental energy. Hence, if adult learners are not convinced of the need of the
proposed learning, they are unlikely to engage in it. Several mothers in this cohort
disengaged from the process as their need to know was clearly out of step with what
their practitioners presumed they needed to know. These disagreements between
women and their practitioners about what knowledge was relevant was interpreted
by some practitioners as rejection, and by some mothers as alienating, resulting in
feelings of being misunderstood, as Anne remarked, I felt misunderstood; I felt that they couldn’t understand why I didn’t want screening especially if there was a potential problem, almost as though I was being irresponsible….. I felt that I wasn’t fitting in that, I was bucking the system………that I was almost, a tinge of being irresponsible in that, here we are, we can prevent these nasty things happening to you as a parent, not considering the child, and we can make your life easier and if you let us, we can take care of this and you can lead a happy life and not have to concern yourself with a child with special needs. I said I didn’t want an amniocentesis, and explained that I would have this child whether there was something wrong or not, ………….I felt like I wasn’t
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accepting their help, and they thought I needed their help and that I would want to make that decision based on knowledge of this unborn child, an yet I didn’t, and that I felt, they didn’t understand. Anne.
Thus the fundamental starting point for clinical education ought to be mutual
negotiation of what the learner needs to know.
The learner’s self concept may also differ between adults and children. Pedagogy
presumes dependency in the learner while andragogy acknowledges the
developmental stage of adulthood as one of self direction and independence in
which learners have matured to a point where they are significantly ‘self’ directed,
not ‘other’ directed. Thus, the motivation to learn must come from an intrinsic desire
or perceived need to become better informed. Consequently, the commonly adopted,
though educationally outmoded, transmissive, didactic educational teaching
strategies often adopted clinically fail to penetrate. Modes of adult education that
require dependency on ‘expert’ teachers may, therefore, cause disaffection, as adult
learners can ‘resent and resist situations in which they feel others are imposing
their wills’ (Knowles et al., 2005, p.65), as Anne’s experience demonstrated earlier.
The role of the learner’s experience in shaping attention levels, motivation to learn,
and knowledge development, are significant and central considerations in adult
learning. Adult learners have accumulated a vast reservoir of prior knowledge and
interpretive frameworks through their wide-ranging life experiences and such
experiences significantly shape their reading of the meaning and worth of current
and new information. The recognition in educational philosophy of prior experience
shaping current understanding strongly resonates with the hermeneutic dimension of
ethical engagement discussed in Chapter Two, acknowledging that our
interpretations are ‘always already’ constituted to some degree. The heightened
awareness and intentional inclusion of prior learning in andragogy contrasts with the
dominant pedagogical view in which prior experience in children is known to be
limited; a stance which legitimises and reinforces the privileging of teacher
experience above that of the learner.
Readiness to learn for the adult learner is triggered by the need to acquire some skill
or knowledge that is tied to real–life situations. An adult learner’s readiness to learn
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is thus linked to their social role and conditioning, thus the unique particularity and
context of an individual’s life has considerable effect on capacity to learn, further
resonating with and complementing the phenomenological framework adopted in
Chapter Two.
Finally, the differences in the orientation to learning and motivation to learn were
observed by Knowles (1990). Child learners, Knowles argued, are predominantly
motivated by external measures such as the desire for good grades, gaining teacher
approval, or avoiding disapproval, and equating learning to the logical mastery of
content or subject matter. Adult learners are more problem centred, embracing
learning as a means to solve actual and immediate problems in real life situations.
The adult orientation to learning is to seek new knowledge which will be practically
applied in the short term, with the most common motivating factors being to
increase one’s sense of coping and self esteem.
If differences exist, and it seems that there are psychological developmental reasons
why they would (Taylor, 1996), it follows that strategies and conditions for
successful learning will also differ between adults and children. Hence, certain
approaches to, and pre-conditions for, learning will be more successful for adults.
Therefore, if we hope to facilitate appropriate learning opportunities for patients in
the context of health care delivery as an ethical imperative integral to the giving of
informed consent, these further six conditions of learning defined again by Knowles
(2005, pp.93-94), ought be considered.
• Adult learners are motivated by the ‘need’ to learn, thus educational
opportunities must be responsive to the particular needs of each
individual.
• Learning builds upon and integrates existing experiences.
• The physical environment must be comfortable, free from distractions
and conducive to positive relational interaction between the
teacher/facilitator and learner. Additionally, the adult learner must
perceive a mutual trust and respect in a collaborative, cooperative
partnership.
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• The goals of learning are mutually defined and ultimately must be
perceived as the learner’s goals. Teachers can facilitate and support
learning but the core responsibility and motivation rests with the adult
learner.
• Adult learners must share active responsibility for what is learned.
Participation breeds a sense of commitment necessary to genuinely
pursue the goals of learning.
• Learning opportunities are designed in such a way that a sense of
progress and success is created. Additionally, adult learners retain some
control and negotiation over how progress and success are defined.
These principles and conditions have permeated adult education in many areas from
ongoing professional and industry skill development and training to university
course structures. However, their ethical importance in clinical care and relevance to
patient learning remain consistently overlooked. Explanations for the failure to
embrace adult learning principles in institutionalised medical care are exacerbated
by the proposition that as illness is a time of vulnerability and dependency, the
presumptions of independence or self direction a key doctrine in adult education,
may not apply (Goodwin-Johansson, 1988, p.12). Further explanations point to
inherent power dynamics within the social and institutional contexts of medical care
where a person in the ‘patient’ role is socially conditioned to submit to the
authoritative expertise of professional health carers and, thus, may not exert their
full autonomy. Some of these considerations are apparent in antenatal care, such as
increased background levels of anxiety and vulnerability (Goel et al., 1998;
Kowalcek et al., 2002; Watson et al., 2003) or the perceived power differentials that
may silence discussion (Bernhardt et al., 1998; Sherwin, 1992, 2001). A vital point
to stress, however, is that while pregnant women may experience heightened
anxiety, they are not ‘ill’ per se. They are generally well, competent, and physically
able. Furthermore, they are not subject to the type of long term institutional care and
control that Goodwin-Johansson (1988) suggests can undermine capacity to assert
an equal relationship with their physician, although a lack of ongoing or established
relationship may be equally disempowering. In the right environment, however, with
appropriate encouragement and acceptance from health professionals, the principles
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of adult learning are highly relevant and could be successfully applied in antenatal
care to support informed consent.
While the conditions presented above are presented as discrete, in reality they are
inseparably interwoven and interconnected. However, Knowles et al (2005) further
claim that the strength of the andragogical model is its flexibility to embrace one,
some, or all of these principles depending on the particular situation. They conclude
that ‘what this means in practice is that we educators now have the responsibility to
check out which assumptions are realistic in a given situation’ (Knowles, 1990,
p.64). In guiding the transformation of learning in the clinical context of antenatal
care many, if not all, of these principles are potentially relevant.
Conditions of Learning in the Clinical Context
‘… because real education as I had already discovered, meant things you
really wanted to know rather than things other people thought you should
know’ (Davies, 1994, p.140).
The quote above from Robert Davies captures the underlying ethos of adult learning
proposed and refined by Knowles (1980, 1989), which is that ‘real’ education for
adult learners focuses on the motivation and need in the ‘learner’ rather than on the
imposed goals of the ‘teacher’. In the clinical context of patient education, each of
these learning considerations above will now be explored more closely through the
voices and experiences of the participants of this study, in conjunction with the
insights offered from other researchers in the field. Their relevance to patient
learning in the context of preparing women to consider the social, ethical, and
medical implications of prenatal screening will also be incorporated in this
discussion.
• The ‘need’ to know
Adult learners are motivated by the ‘need’ to know. Thus educational opportunities
must be responsive to the particular needs of each individual. The need to know
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incorporates three distinct dimensions defined by Knowles et al (2005, p.184) as ‘the
need to know how learning will be conducted, what learning will occur, and why
learning is important’. When these three dimensions are incorporated into
formalised adult learning programs, higher levels of success are achieved (ibid).
Significantly, prior conversations negotiating these three areas provide a vital
opportunity to clarify joint expectations, to identify and address misconceptions, and
to reveal the objectives of the learner. Thus shared goals for learner and teacher, or
patient and practitioner, may be negotiated and progressed.
The accounts offered by several mothers in this cohort supported the view that the
particular types of information presumed to be ‘of value’ by society at large, or
privileged by routine screening protocols, were not universally shared by mothers,
many of whom did not see the ‘need’ for the specific information being offered. As
Terri remarked,
I definitely wasn’t prepared for other problems being flagged, and I really wasn’t interested in finding that out. Terri
Or Anne, It only occurred to me as I was undergoing the ultrasound that they were making measurements of different parts of the child’s anatomy and physique and then I realised, I was thinking , well why are they doing this?.... I thought they must be looking for things that were unusual or not right and only then it occurred to me that they were looking for abnormalities...... I thought to myself well what if they do find something that doesn’t measure up to their expectations? I felt they got the information they needed and off you go. Anne
Therefore, the need to clarify patient learning objectives is a critical preliminary
element of informed consent, as patient objectives often differ substantially from
those held by health care professionals. The potential clash of motivation, and the
subsequent misunderstandings experienced and acknowledged by participants in
this research, reinforce this point and are further supported in the literature,
particularly with respect to risk assessment and disclosure (Liamputtong et al., 2003;
Tankard - Reist, 2005). Bridson, Hammond, Leach, & Chester (2003, p.1159)
further note that the ‘focus on disclosure which has arisen from the need to tell
patients about risk has meant not enough attention is given to patients’ objectives’.
Consequently, they (ibid) argue, ‘taking the time to explore patients’ objectives not
only improves consent procedures but may avoid some interventions altogether’.
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The delivery of prenatal screening may indeed have been avoided by Terri, Anne,
Penny and Danielle had their objectives been more explicitly canvassed prior to
screening. As Danielle reflected after the birth of her daughter when it became clear
that the vague anomaly picked up during her prenatal screen result was a false
positive, ………..their attitude (to the false positive) was like ‘well that’s good news isn’t it! That’s all worked out alright then” and I was like, well yes it’s great news, but it’s a shame I had to go through it! I don’t tend to question that sort of thing…..I mean perhaps it would have been even better news if we hadn’t done the ultrasound in the first place and not gone through that horrific time………….yeah…. Danielle
Or Terri, who reflected,
They told me the tests would tell us about the Down syndrome, neural tube defects would be covered, none of which was what my cousin’s child had, but they didn’t point that out to me – I did my own research, I found that out. I just got on the internet; it took 15minutes, its amazing what you can find there. I thought I've done this for nothing. Terri
These four women were opposed to termination and were committed from the outset
not to ‘act’ upon an unwelcome result, further stating an unwillingness to place their
child at risk through amniocentesis. However, for some, their initial lack of insight
into the underlying clinical purpose of screening, which they interpreted as part of a
compulsory routine with the added bonus of ‘seeing the baby’, coupled with poor
prior understanding of the ambiguity of a ‘screening’ result versus a more rigorous
‘diagnostic’ result, was never revealed. The anxiety and trauma subsequently
experienced, particularly for those women with false positive results could have
been significantly ameliorated by a prior discussion to decide whether this
particular, incomplete knowledge was indeed genuinely valuable to them prior to
screening.
Once a need to know is jointly negotiated and established, patient willingness to pay
attention is heightened, creating one of the fundamental precursors to learning.
Learning is more effective when the learner pays attention to what is being
presented; hence, paying attention is the critical precondition to learning (Cowan,
1995; Gage & Berliner, 1991; Knowles et al., 2005). As our senses are constantly
exposed to various inputs and sensations, we subconsciously and perpetually filter
information to establish what is worthy of our attention. Thus a key factor in
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determining which stimuli catch our attention is the personal motivation to learn
which is significantly influenced by the perceived need to know. However, patient
and practitioner presumptions about what ought to be known may differ
significantly, and attention and foci may be overtly or covertly directed. The amount
of attention paid may reflect to a degree the way such new knowledge is presented
and by the significance clinical staff attach to it. For example, as previously flagged
(Bernhardt et al., 1998), in the busy clinical environment many health practitioners
fail to even mention the moral aspects of prenatal screening as worthy of discussion.
Such failure may imply a lack of importance and signal to the patient that attention
is not warranted. Conversely, when such effort and emphasis is placed on risk
assessment and disclosure, its importance may become unduly exaggerated. One
genetic counsellor described the common scenario where the shortage of time limits
pre-test discussion to the bare technicalities, leaving little space to address any social
or moral considerations.
Well…… in 15 minutes there’s not a lot of time …………….look it’s pretty much a technical discussion for good or bad………….it’s seen as very much an education of this is what it is…these are the type results it will give you… you can’t say yes or no, but if you want to know for sure, you’ll have to have this or this………..I can talk to you after the result and we’ll talk in more detail …is this something you want to have?......it very much is factual , yes, very rarely would it go off……..[to the ethical]. Genetic Counsellor 2
Similarly, when education preceding prenatal screening is glossed over or reduced to
the dispensing of a pamphlet or list of conditions, as was Mary’s experience, a subtle
cue about the value of such education as nonessential is sent. Consequently, in a
cultural norm where something is deemed unworthy of consideration, the amount of
attention paid may be lessened (Winch, 1998, p. 121), a situation that significantly
erodes patient learning and undermines informed consent.
Although the patients’ need to know is an important predictor of their engagement
in, and commitment to, the learning process, this does not suggest that clinicians
have no input or guidance in determining which clinically significant information
patients should be alerted to. Indeed, their professional knowledge and clinical
expertise provides a substantial and valuable contribution to the insights sought by
women. The critical determinant is that a patient-centred dialogue takes place in
which a mutual exchange of objectives is shared and jointly negotiated between
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practitioner and patient (Bridson, Hammond, Leach, & Chester, 2003). Sharing
power with patients in this way may be liberating for practitioners, as shared power
rightfully brings shared responsibility, lightening the perceived onus on practitioners
to present themselves as the authoritative source and arbiter of all relevant
knowledge (Elwyn, Edwards, & Kinnersley, 1999; Fisher, Dixon, & Honeyman,
2005).
• Integrating Existing Experience.
As acknowledged throughout this work, moral frameworks are complex, thus, when
individual women come to the process of learning they bring particular interpretive
paradigms, both morally and educationally about how decisions will be reached. In
the context of pregnancy the nature of learning and the nature of ethical decision
making will encapsulate a broad spectrum of values and prior experiences. As
previously illustrated Leanne’s prior knowledge and experience of her colleague’s
child with Down syndrome created a strong personalised sense of fear. Coupled with
her experience of conceiving very easily, she developed a firm commitment to
embrace all screening possibilities. Similarly, pre-existing faith-based convictions
shaped the attitudes and behaviour of some other mothers as Anne explained,
I believe that every child has intrinsic worth and I think that every child should be allowed to live. I said I didn’t want an amniocentesis, and explained that I would have this child whether there was something wrong or not. Anne
Or Terri,
I had the attitude that if God had intended me to have a child like that then... (so be it). Terri
Penny’s prior experience with a miscarriage and difficulties conceiving again
featured strongly in her decision to reject amniocentesis,
we had had a miscarriage three years earlier, and were told that our chances of falling pregnant again because of other issues between us were very low, so we said, even if there is a problem, we wouldn’t do anything about it. Penny.
Only one practitioner disclosed the influence of her personal faith in her assessments
of the normative routines of prenatal screening saying,
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I don’t mention that I’m a Christian, I don’t actually mention my ethical viewpoint and I find it very frustrating that any opinions that can be seen to be linked to religion are then discredited and I think that’s really frustrating. Even although people who approve of abortion also have an ethical stance, their ethical stance is that they’re OK with it…..they don’t see it as an issue…..but because it’s not based on a religious belief, it’s not presented as moralistic. I struggle with that, I really struggle. General Practitioner 2.
As flagged by the GP above, the stance to promote screening and termination as an
ethically unproblematic outcome equally reflects a pre-existing positional bias and
one which inevitably translates into presumptions of practice.
The above comments illuminate how the broad range of prior experiences of adult
learners such as faith convictions, previous reproductive history, or perceptions of
disability potentially impacts upon ethical decision making in numerous ways. They
further illuminate the uniqueness and unpredictable influence of individual
perspectives, a uniqueness that demands an individualised stance towards supporting
adult patients in their learning journey, but one which the often predetermined
educational habits within institutionalised health care do not accommodate
(Goodwin-Johansson, 1988). This inherited, traditional cultural toolkit of a
predetermined transmissive model of learning seems so entrenched and
unchallenged that perhaps as Bruner notes ‘its form is so ubiquitous that it is likely
to be overlooked, in much the same way as we suppose the fish will be the last to
discover water’(Bruner, 1991, p.4).
Knowles et al (2005, p.191) summarise the impact of previous understandings
noting that they
• are the source of a wide and divergent array of individual interpretations
and difference,
• may provide a diverse and rich learning resource,
• may bring inherent biases which may inhibit or support new learning,
• are inextricably linked to each person’s sense of self identity.
While such experiences may serve as a resource to draw upon, they also at times act
as a gatekeeper or obstacle to the learning experience (ibid, p.195). As ‘knowledge is
never point of view less’(Bruner, 1991, p.3), the very nature of both educational and
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ethical inquiry significantly rests upon incorporating pre-existing knowledge,
relationships, and values. As moral contexts are interpreted through a unique veil of
history, relationships, and commitments, consequently we are always interpreting;
always filtering and our interpretations are always linked to past experience and
understandings which lay the foundations for future interpretations. Hence, actively
seeking and interpreting prior knowledge is essential to making the necessary
connection to current considerations.
• The Importance of Prior Learning in Constructing New Knowledge From a technical cognitive perspective, educational philosophers and theorists have
long acknowledged that when new information is presented in a way that is
disconnected from prior understandings, the creation of meaning upon which
reflective understanding is built is severely stifled (Dewey, 1938; Knowles, 1990;
Woods & Barrow, 1975). Thus, the construction of meaning to unfamiliar ideas is
essentially mediated through the use of familiar terms (Woods & Barrow, 1975).
Eliciting existing beliefs is, therefore, a crucial first step in any educational process
as presenting content out of context from past experience, or in isolation from related
knowledge, hinders the necessary creation of links that create the reflective
understanding sought by the ethical standard of informed consent. Indeed, if these
links to existing knowledge are not made, shallow, surface understanding may result
(Gage & Berliner, 1991; Winch, 1998), compromising informed consent.
Educationalists acknowledge the clear need to establish current understanding before
expanding with new concepts, likening the process to giving directions to a person
who is lost. The fundamental question before giving directions would (and should)
be: ‘where are you now?’ Frequently, the answer to this question of where a
woman’s knowledge is now prior to embarking upon prenatal screening is neither
sought nor considered explicitly relevant by existing clinical education protocols.
This crucial ability to attach meaning to new information mediated through existing
knowledge was succinctly demonstrated by Petersen (1966 cited by Gage &
Berliner, 1991, p285). During his 1966 study into the mechanisms of short term and
working memory, respondents were asked to recite meaningless combinations of
three letters. When repeated immediately, 88% were successfully recalled. However,
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when rehearsal was prevented for a mere 18 seconds, the success rate dropped to
only 15%. Peterson hypothesised that, as the nonsensical letter combinations had no
meaning or familiar code, they were easily forgotten. Their lack of meaning
suggested that no associations to existing reference points could be formed to aid
retention. Likewise, for many women the terms associated with the prenatal
screening tests they are about to undergo are also unfamiliar, even nonsensical, a
reality acknowledged by the following practitioners who remarked,
I see that as my role in helping them interpret, what is essentially, a foreign language, that’s how I see it………and it is… really. Genetic Counsellor 2 Even those words….. ‘nuchal translucency’ is not something that’s been around for a long time, so measuring the thickness of the skin at the back of the neck between 10-12 weeks, there’s not a lot of knowledge, its not something their mothers can tell them about, because they didn’t have it. Clinical Geneticist
If no previous point of reference exists for terms such as nuchal translucency,
trisomies, and amniocentesis, the opportunity to learn is made harder as meaningful
links for new information to existing schema of understanding must be built. The
creation of these mental maps takes time to develop and in the current clinical
scenario time is frequently scarce. Indeed ‘lack of time’ is often invoked as an
explanation for poor patient/carer relationships, as inadequate communication
creates low levels of satisfaction (Belle-Brown, Stewart, & Ryan, 2003; Bub, 2004;
Duberstein, Meldrum, Fiscella, Shields, & Epstein, 2007).
In a recent recommendation that shows scarce understanding of the educational
process, as opposed to the regurgitation of information, researchers in the UK
(Dormandy et al., 2002a) have recently advocated for screening protocols in which
prenatal testing information is dispensed, an immediate response elicited, and testing
performed during the same hospital visit. This recommendation has been suggested
on the grounds of streamlining administrative processes and enhancing informed
consent by reducing practical barriers to testing. However, as highlighted above in
the simple research undertaken by Peterson, the depth of the knowledge and
reflective understanding on which this immediate stimulus/response type of
‘informed’ consent is elicited must be queried. While it may be administratively
appropriate to elicit an immediate response for simple interventions with low level
consequences, the complexity and gravity of the potential outcomes of prenatal
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screening demand a fuller educational commitment. Perhaps as Ken Bain (2004,
p.41) has described, the type of shallow learning created by the immediate
stimulus/response advocated above could be described as ‘bulimic’ in the sense that
a ‘learner’ is fed ‘facts’ which may be absorbed for a specific narrow task,
regurgitated in a limited context then purged to make way for the next onslaught of
data. The depth of reflective understanding such ‘education’ creates seems
questionable as an ethical foundation when preparing women embarking upon the
ethically complex practice of prenatal screening. While this mode of informing may
meet the legal obligation of the informer to give information, it fails in an ethical
sense to promote the critical understanding required for considered moral decision
making.
From a clinical education perspective, if we are to achieve the knowledge
development that is essential to empower women in making genuine and active
decisions that are coherent with their moral frameworks, we must build strategies
and opportunities that incorporate the selective filtering process to accommodate the
unique and highly individual positions held. As Goodwin–Johansson (1988) notes,
flexibility about the quantity and type of information sought is required. Time and
commitment to clarify and to explore the objectives of screening to the patient are
also critical. Responding to existing frameworks of interpretations is a further
critical precursor to successful learning; hence, individual negotiation of which
questions are to be answered must form an integral and foundational part of ethically
responsible patient education. It is acknowledged again, however, that the
requirement to ‘inform’ in the legal sense of informed consent, and the requirement
to ensure understanding in the ethical sense are two different standards of
engagement. Informing for legal purposes is judged upon the action of the informer,
while informing for understanding in the ethical sense focuses upon the needs and
comprehension of the learner. Any patient-centred care must hold the latter as its
benchmark.
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• The Physical Environment and Patient Practitioner Relationships
Knowles et al (2005) advocate that the physical learning environment should be
comfortable, free from noise and distractions, and conducive to positive relational
interaction between the teacher/facilitator and learner. Ideally, the adult learner
should perceive the educational relationship as one of mutual trust and respect in a
collaborative, cooperative partnership. However, in the clinical setting, the dominant
aim is primarily one of identifying medical problems and providing physical,
medical treatment. The fundamental purpose (rightly or wrongly) is not to promote
the learning required to become informed for the purpose of giving ethically robust
consent. Hence, a significant clash of purpose and culture may exist in this context.
As a place where the isolation and treatment of medical ‘problems’ is paramount, it
is perhaps understandable that the creation of a reflective learning space for patients
has taken on a lower priority. Furthermore, the practical ramifications of rejecting
the overly paternalistic models of the past, and of embracing patient-centred
collaborative partnerships are a comparatively recent shift in medical thinking.
Hence, the finer details of what this relatively new patient-centred dynamic looks
like clinically are still emerging and evolving (Cegala, Street, & Clinch, 2007;
Elwyn et al., 1999; Elwyn et al., 2003; Fisher et al., 2005).
‘Adult education is predicated upon creating free space for reflection and
discourse and a reduction of the power differential between educator and
learner……… Ideally (and this is characteristic of adult education), the
relationship of educator to learner is one of subject to subject, a peer
relationship, rather than one of subject to object, not uncommon in the
education of children’ (Mezirow, 1996, p.171).
When this clash of purpose between the moral obligation to educate and the need to
treat is combined with the urgent and often pressurised environment, tight
resourcing, time restrictions, and a perceived need for quick decisions, giving due
support to a learning process that nurtures the critical understanding necessary for
autonomous choices to be made becomes seriously compromised. However, with the
potential consequences of poor understanding and low levels of informed consent
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being ongoing psychological distress, anxiety and potential feelings of depression
(Stewart et al., 2000, p.804), a practical commitment to supporting the right
environment which facilitates and supports patients’ understanding seems overdue.
In terms of the physical barriers to learning, the context of busy clinics with their
inherent time pressures, stretched resources and overcommitted staff can present a
distracting environment, one in which attention is focused purely on the immediate
medical outcomes, while the educational and ethical outcomes take secondary
priority. Such time constraints, as Bruner (2004) further notes, have worrying
consequences inhibiting reflection and learning,
‘One of the great triumphs of learning is to get things organised in your
head in a way that permits you to know more than you ‘ought’ to. And this
takes reflection, brooding about what it is that you know. The enemy of
reflection is the breakneck pace…’ (Bruner, 2004, p.98).
For the participants of this study, several factors were raised as environmental
impediments to learning in the clinical environment, most notably that of limited
time as the following comments illustrate. From the mothers,
When I have to wait I get the impression that the staff are very busy, they have a lot of patients to see therefore it becomes a bit like a factory and unfortunately that’s just the nature of the situation…I think when you have been waiting to see a doctor and you finally have your chance, you often don’t ask questions because you know they are so busy. Anne. I do think the communication issues are a bit of a problem there. It’s hard to say, I think it comes down to the speed of service, they are seeing so many women, and they don’t have the time. Terri.
Terri further explained that the rushed process and physical environment denied her
‘time to think’, I think that each parent should get, on a piece of paper, so they can read, re-read, proof read, information about the tests, what are the risks, what could the outcomes be, what do they test for, what don’t they test for. People need to be able to go home with that, rather than be put on the spot to make an instant decision…. That’s what I felt was necessary. These people were saying to me, you need to make a decision, right now; they didn’t want to give me time to think. Terri
Or the Down syndrome support group volunteer who remarked,
Women often don’t even know there is support [after receiving a prenatal diagnosis]; maybe if women were shown the big picture and offered support they might choose to slow
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down, take their time and think about things. I think it’s done too quickly, women are very quickly rushed off to more tests, genetic counsellor, and usually termination, I think it’s done without enough time to sit and talk with partners and family, and I feel women suffer from the rush. Down syndrome Support Group Volunteer
From practitioners, the following revelations about the impact of time pressure
which may compromise the quality of clinical care were offered:
Inside this particular hospital, you know they don’t have an hour to talk with patients, in fact, they don’t even have 20 minutes to talk with a patient, they have 10 minutes. How do you develop a rapport in 10 minutes? How do you determine what this lady’s thoughts are and steer your thoughts in line with hers? You don’t………..I mean there are two opposing thoughts coming in and if your belief is we want this baby out of here in a timely manner in a way that’s convenient to us, let alone her…. then who cares?........Midwife 2. I think we get so busy and carried away with time, we just say “here, can you sign this” and yes, a lot of trust is put in us, and people hope we’ll do the right thing by them…. Midwife 4 If someone says at the end of [the initial appointment] ‘so tell me about screening’ I don’t want to give them a quick answer………..I will tend to have a set ‘spiel’ about that, so I wouldn’t rush that conversation …….so I might decide to just do it and run late………..or I may ask them to come back, it’s a big area and there’s a lot to consider….I wouldn’t just say ‘oh yes, there’s a few tests, here’s the form’ but I know there are GPs out there who would do that. General Practitioner 2 GP’s are a bit the same; they are running that day to day stuff – how much time do they really have to teach women everything – they really don’t………..they really rely on women to find out information and certainly a lot of it goes by word of mouth, absolutely and that’s where the myths perpetuate. Midwife 2
Lack of time and less than ideal relationships between patient and practitioner often
combine to create poor communication habits, which Braddock (2002, p.344)
describes as a ‘one way conversation, without meaningful participation by patients’.
Stewart et al (2003) further identify time and poor communication as contributors to
the souring of relationship that leads to the loss of important ‘teachable moments’.
Relationships between practitioners and patients and their influence on
communication were a further area of concern which drew comment from
participants, some positive, some negative. From the mothers:
Through the pregnancy…I wouldn’t say we were a team….but I felt that the obstetrician was on our side………..it was more of a partnership. [E: An equal partnership?] No……in that he was the doctor and we’re just the patient… I don’t think I would call that equal………….because he still gets to make the decisions….Penny Or Terri,
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[E: How would you describe your relationship with your doctors?]
What relationship? We’re talking about a public hospital here! Well, no, no definitely not open and communicative. He just told me what I needed to know, but, well, doctors are busy. Terri
Elizabeth relayed an example of what she considered to be poor communication
with an Obstetric Consultant at a large public hospital, describing the experience as
a ‘Farside moment’. The depths of the chasm of miscommunication lead Elizabeth
flippantly to dismiss this consultant’s professional ability.
The consultant at the hospital read through my notes and noticed I had seen a genetic counsellor, she asked why – and I explained that I had another child – in the pram beside me – who was born with trisomy 21. …“How do you know?” she asked me. You know it was like a ‘Farside’ moment, with an obstetric consultant who doesn’t believe me, how did I know my child had Down syndrome, and I just pointed to Grace, as if to say “hello!!”. I thought she’s obviously stupid. Elizabeth
Poor communication in the delivery of ‘bad’ news also drew comment from some
mothers, who noted
The way the paediatrician said, ‘I’ll give you a ring when the results come back” And he just rang one day, four months later and said ‘oh yes, that test result came back, yes it’s positive for XXX, if you want to speak to a geneticist, just ring me tomorrow and let me know”. And that was how he spoke to me…….and I was dumbfounded….standing there going uh!!. And because I was dumbfounded I couldn’t ask any questions… and ‘ring tomorrow’, what was that all about? That to me was a very inappropriate way. I thought it should have been, please come into the office; we’d like to discuss the results…. That should have been the minimum way of telling someone their child had a particular condition….Penny.
And Mary Well the way [the nuchal result] was presented to me was like being hit by a train………..there needs to be more discussion about what the options are……Mary
On the positive side, many mothers had strong pre-existing relationships,
predominantly with their GP’s, based on trust in their physician’s expertise.
Significantly though, this did not necessarily translate into the recommended
participation in a collaborative partnership or the mutual defining of goals with their
carers. Most communication problems encountered occurred between external
specialists with whom women had not developed a good therapeutic relationship.
Significant research efforts have been invested to assess and critique physician
obligations in clinical communication (Anderson, Tschann, Guillion, & Oppenberg,
1989; Hulsman, Ros, Winnburst, & Bensing, 1999; Hulsman, Visser, & Makoul,
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2005), however, comparatively little research has been directed towards the
influence of patient communication on the medical conversation (Cegala &
Lenzmeier Broz, 2003). While the communication experience is significantly guided
by the attitude and orientation of the physician, importantly the communication
dynamic is also appreciably co-created by the patient (Cegala et al., 2007). Hence,
patient behaviour, expectations, and level of participation can exert a positive
influence in directing how clinical conversations unfold. As Cegala, Street and
Clinch (ibid, p.177) observed:
‘when communicating with high participation patients, physicians provided
significantly more information overall, more information in response to
patients’ questions and volunteered more information than when interacting
with low participation patients’.
They further concluded that ‘high participation patients’ communication style
promotes better alignment of patients’ and physicians’ goals and agendas’, a critical
precondition of successful adult learning. The desire for increased patient
responsibility and participation was also voiced by several practitioners, illustrated
in the obstetrician’s comment:
I guess from the word go, and this applies to every aspect of medicine if people really understood what they were having the test for, why they’re getting things done , what we’re trying to really achieve, and understanding these are really optional things….if they questioned a bit more……and interacted. To some degree there has got to be some motivation to self educate by the patient, some recognition of the importance of their own health……but we can’t presume to be paternalistic about it either… Obstetrician
High participation may positively influence communication; however, barriers such
as feelings of intimidation when communicating with practitioners, perceived power
imbalances, or patient fears that being assertive may endanger the relationship have
been observed. These fears often translate into a difficulty with asking questions
(Godolphin, 2003; Godolphin, Towle, & McKendry, 2001; Towle & Godolphin,
1999; Towle, Godolphin, Manklow, & Wiesinger, 2003). However, as
communication patterns which encourage patient questions create stronger patient
involvement, lower levels of anxiety, fewer subsequent visits and referrals, and
strengthened educational outcomes, creating the right conditions to encourage active
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participation is highly desirable (Cegala, Gade, Lenzmeier Broz, & McClure, 2004;
Cegala & Lenzmeier Broz, 2003; Post et al., 2002; Stewart, 1995; Stewart et al.,
2000; Stewart et al., 2003; Weston, 2001). The alignment of goals and firm
commitment to supporting patient questioning and promoting participation is needed
as it is a vital predictor of successful adult learning and clinical education.
Finally, many of the practitioners interviewed displayed genuine commitments and
behaviours that would foster strong educational and therapeutic relationships, which
promoted participation and valued good communication. Although most stopped
short of advocating genuine sharing of the therapeutic goals, the following
comments provide encouragement that, amongst this cohort of practitioners, there is
an awareness of the importance of good learning outcomes for patients.
My personal opinion, and this is purely a personal opinion is that we have come a long way in understanding and communication with women and understanding how they are feeling, this pregnancy is the most important pregnancy ever because it’s their baby so …..In general I think there is a bit more understanding and respect. Midwife 3 Being able to spend some time with them, ask them appropriate open questions to ascertain their understandings of not only of the information that I’ve given verbally, but also the written information that I would have given too… You bring them back and talk to them again…..and that’s the luxury you have in general practice that hospital don’t have…the luxury in general practice in terms of prenatal screening is that if they walk out of the room and they are still not sure, you encourage them to come back and talk about it and make sure they know the door is open………General Practitioner 1 Although everyone is booked to a timeframe of half an hour…. some go over, but I think our doctors are very, very aware that they must ……….the woman can’t go home without a good understanding….there’s always that pressure, and sometimes it’s hard to know what the understandings are……you know……. Midwife 1 I try not to give too much information and expect them to take it all away and read it all and act upon it. It is routine, having said that, to do a post clinic letter, so that’s usually about 1-1 ½ pages of content, usually summarising the important content of what took place. [E: Is this so that they have something concrete to refer back to?] Yes, so that letter is primarily the way that that happens, its not there immediately from the consultation because there’s a time delay from dictation to transcription to sending it out, but….. it serves as a reminder. It’s not necessarily a bad thing that there is a delay before they get that letter because it helps to reinforce what was said at the time …. I really don’t know if people read those letters, certainly many do, many keep them, and many don’t…… So, once they’ve got it, it’s theirs to show other family members, give to other health professionals as they see fit…..the issue of privacy and consent is in their hands. Clinical Geneticist.
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• Mutually Defined Learning Goals and their Role in Fostering Shared
Responsibility and Commitment
Successful adult learning, Knowles et al (2005) claim, is enhanced when the goals of
learning are mutually defined by teacher and learner, and ultimately embraced as the
learner’s goals. Once a sense of ownership in the learner is established, an elevated
sense of responsibility and commitment to genuinely pursue these goals is formed.
Additional benefits are increased feelings of competence, further re-enforcing the
pursuit of learning as a positive experience. Again, the mutual clarification of goals
at this stage depends upon effective dialogue as supporting the ethical importance of
dialogue and narrative in collaboratively constructing a mutually respectful,
appreciative, and hermeneutically aware relationship.
Much attention has been focussed on poor patient knowledge as an obstacle to
informed consent and defining shared goals, and as mentioned above, several
programs have been devised to teach patients how to better interact with
practitioners and to improve their health literacy ( Marteau et al., 1992; Post et al.,
2002; Towle & Godolphin, 1999; Towle et al., 2003), all of which are important
predictors of effective learning. However, another major impediment to informed
consent and good educational outcomes for patients is that of poor practitioner
knowledge about the details and potential outcomes of screening. Several studies
have revealed that some medical staff may lack the presumed knowledge or skill
required (Sadler, 1997; Tyzack & Wallace, 2003), often omitting pertinent
information for patients about prenatal tests because they may lack it themselves.
Clinical staff have also been observed to misjudge how much information patients
need or want and are frequently driven by the fear that too much information will
create anxiety in their patients (Marteau et al., 1992, p.138), a view echoed by some
practitioners in this cohort:
A lot of information is not given because it feels extraneous at the time, like it’s an extra burden, and with a very low chance of it happening why would you talk about all the potential possibilities…unless you’re dealing with the reality of what’s there…I think its just time, economics and emotional burden… why would you worry someone about something that’s highly unlikely.… Genetic Counsellor 1
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People are worried about exacerbating this anxiety by mentioning the possibility of an abnormality, so we don’t actually tell people, well, your risk of miscarriage in the first 8 weeks is 15%, between 12-20 weeks it this much and so on… the chance of stillbirth after 20 weeks is 1 % and so on ….. You don’t tell women those things……..and likewise mentioning anything about abnormalities, you don’t particularly mention to people that well…..5% of all babies can be born with something because you don’t want them to worry. So, that’s one of the barriers, not to worry the pregnant woman so much and so that effects how much you actually talk about. Obstetrician
Poor practitioner knowledge may also contribute to an excessive enthusiasm to test
as lack of confidence may encourage the exercising of a disproportionate amount of
caution. Tyzack and Wallace (2003) observed that less than 10% of the practitioners
they surveyed about pre-test counselling for Down syndrome screening provided
accurate information on the characteristics of screening tests, concluding that the
majority were not sufficiently informed to provide optimum counselling to patients.
Noting the obvious link between practitioner knowledge and informed patients, they
made the recommendation that ‘ensuring that care providers are themselves well
informed is therefore fundamental to delivering a quality screening program’ (ibid,
p.220). Concerns about poor practitioner knowledge or proficiency, and the
inevitable impact upon the development of appropriate understanding in patients
was certainly raised as a factor by many practitioners in this cohort, as evidenced in
the following comments,
GP knowledge is often mediocre as to the specifics of the exam, so they will not usually explain things like false positives etc…..Obstetrician I think that one of the reasons why shared care is somewhat fraught is that many people are giving shared care that have no ability whatsoever to determine the lie of a foetus or presentation… I happen to know that there are not too many GP’s, in my opinion, well qualified and able in my opinion to comment about antenatal care…General Practitioner 1 Some of them [GP’s] didn’t know what [the 12 week scan] was, they really quite frankly didn’t know what they were looking at and therefore they were ordering the test, putting their name to it and not knowing really how to interpret results, what was going to come from it, even although the safety net of course was that anything abnormal detected here would be directly referred to tertiary care here and the GP was notified. Midwife 3 Some GP’s know this information really well, but it’s really variable in terms of that, and also how many doctors organise the blood tests as well……so….it’s very variable ….and it’s frustrating because it’s easy information for GP’s to give and I know that there have been many information sessions aimed at GPs on the whole screening issue, they should perhaps be passing on more knowledge that what sometimes we see. Genetic Counsellor 2
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The recent shift in Queensland Health to a ‘shared care’94F
95 model of antenatal care
may have contributed to under-equipped GP’s being given additional responsibility
for ordering specialised tests which they previously had no involvement with. One
hospital midwife explained:
I do see that GP’s are having a lot of assumptions made about their knowledge……..they are doctors, therefore they should know everything….without really, really giving them the good education they require…………this is something new that’s come in after a lot of these GP’s began practice ……and they have never ever had to deal with it…….I guess some skills wouldn’t be there in the same way as people who have been brought up , you know newer GP’s who have learned about this screening right from the beginning of medical school…… many GPs have never had to deal with it before, and even within nursing, you don’t put people into areas to do things that they don’t have the skills to do, I certainly wouldn’t want to be put in cardiology……..the assumption is made from the outset that they know it, they do it, they are GP’s, they just do it……………….the assumption is made I guess by the policy makers in the organisation…..[we] need to assess what sort of education is needed….how is it going….and pick up on any comments or complaints that come in. How do you reach the ones that you need to reach because there are a lot who do know? How do you find the ones who don’t know about it? There’s the cost factor too…..you can only send out so much stuff……and the time to prepare so much information…… it’s a difficult task…… Midwife 3
Hence, before mutually defined learning goals can be negotiated, practitioners must
also be supported and equipped to embrace their critical ethical role as facilitators of
patient education.
• Defining progress and success
The final consideration of adult learning suggested by Knowles et al (2005) is that
educational opportunities should be designed in such a way that a sense of progress
and success is created. While most of the insights offered by Knowles et al (ibid) in
this phase centre upon ‘evaluation’ measures of more formalised learning, in the
clinical context of preparing women to give informed consent to medical
interventions, the relevance of this final phase is not instantly obvious as, clearly,
there are no external assessments to ‘pass’ or skill criteria to fulfil. There are,
however, internal criteria of success to be met. If the purpose of the learning is to act
as an ethical safeguard, pre-arming and equipping women with the relevant
knowledge to make decisions in keeping with their individual moral frameworks,
some of the trauma and anxiety created by the common misunderstandings
recounted by the cohort of this study may have been averted. As high levels of
95 See footnote 55, p.159
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informed consent are associated with greater acceptance of both positive and
negative outcomes, success and progress in this context may be realised in better
coping mechanisms and psychological preparedness to step up to the events that
unfold.
The Shared Ethical Orientation of ‘Patient-Centred Medicine’ and Adult Learning
If we value informed consent as a safeguard to the ethical integrity of medical
interventions, we must seriously value the educational process through which
patients and practitioners become informed. The pre-conditions supporting adult
learning suggested by Knowles (1980) outlined above, raise the practical question of
how (or whether) this andragogical educational framework may be integrated into
clinical care. Many of the proposed conditions may appear antithetical to the
medical environment, such as genuine shared decision making, negotiating patient
objectives even when they stand in conflict to conventional medical wisdom, or
embracing a particularised, rather than generalised, view of unique individual
contexts and interpretive frameworks.
The emerging trend towards “Patient-Centred Medicine” may provide a fitting
platform for change. Patient-centred medicine positions the patient as an equal
partner in health care decisions and thus provides a workable foundation on which
to construct adult centred learning engagements. This approach is already gathering
considerable momentum and is increasingly associated with improved health
outcomes on many levels such as improved patient and practitioner satisfaction,
better health outcomes with fewer referrals, and a reduction in the number of
malpractice suits (Stewart et al., 2000; Stewart et al., 2003; Weston, 2001).
Closer examination reveals that the core values of patient-centred care of respect for
relationship and a firm commitment to incorporate the patient (learner) perspective
via genuine communication mirror the foundational elements of adult learner-
centred educational theory. The common feature of both is their shared ontological
orientation, which further resonates with the ontological insights of a
phenomenological approach to ethics as outlined in Chapter Two. Recognising the
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‘self’ as related, embedded, historicised, and dialogically and narratively
constructed, the patient-centred approach actively seeks to incorporate prior patient
knowledge, existing interpretive frameworks, and individual values and beliefs,
encouraging physicians to respond to the uniqueness of individual patients (Stewart
et al., 2000, p. 804). Hence, the growing influence of Patient-Centred Care in
medicine provides a cohesive framework that is ethically, educationally and
therapeutically appropriate in addressing the observed ethical shortcomings that
flow from the inadequate transmissive educational paradigm currently adopted. Like
the andragogical model, a core aspect of ‘patient-centred care’ is the need to find
‘common ground’, to establish shared goals, and to build secure relationships as a
basis for a constructive therapeutic partnership. While Stewart et al (2003) note that
establishing this relationship may be initially time consuming, once a working
relationship is formed the time spent on subsequent visits may be reduced as the
trust and confidence developed can expedite subsequent clinical decision making.
As the potential consequences of not developing secure clinical partnerships with
patients are insecurity, anxiety or depression that may lead to further intervention at
a later date (Stewart et al., 2000, p.804), the potential ethical, clinical, and financial
benefits that may flow are clear. Benefits of robust informed consent mentioned
earlier include higher levels of patient and physician satisfaction, fewer referrals,
and a decreased number of medical malpractice suits, suggesting that the potential
ethical benefits flowing from support and facilitation of patient learning as an
integral part of the informed consent process may produce very practical dividends.
Transforming Patient Learning in Clinical Care
A number of practical challenges flow from accepting the argument that ethical
practice, through informed consent, is inextricably linked to patient education. The
explanations offered by Knowles (1990) and Knowles et al (2005) into the
developmental requirements of adult learners provide valuable insights to support
the ethical imperative to educate patients in clinical care. Points for further
consideration include how such educational understandings may be incorporated
into practice given the existing time constraints. Given the identification from this
research of blurred accountability for informing, important consideration of who is
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accountable for patient education must be addressed; reflections on how
understanding can be assessed or whether patient learning should be routinely
assessed will also need to be answered. The importance of updating and supporting
practitioners’ technical knowledge in addition to raising their awareness of the
requirements of the frequently underestimated role of patient educator must also be
proactively addressed. Finding ways to encourage patients to improve their own
health literacy and become more participative in their clinical education forms
another critical part of the equation. All of these facets of developing more ethically
robust care warrant further attention once the link to patient education is accepted as
ethically crucial, rather than as an optional extra undertaken only by highly
motivated practitioners or patients.
Thus, the area of clinical practice is ripe with possibilities for further empirical
exploration of these issues. Protocols already exist for assessing levels of informed
consent (Braddock, 2002; Braddock et al., 1999; Braddock, Stephan, Levinson,
Jonsen, & Pearlman, 1997), for assessing communication styles, and for forging
more successful patient collaboration and participation (Cegala et al., 2004; Cegala
et al., 2007; Post et al., 2002). Therefore, the effects of adopting different
educational strategies into clinical regimes could be monitored and evaluated,
forming the foundation of evidence-based, time efficient, clinically effective
educational practice. Such ‘evidence-based’ research may then illuminate how
educationally sound frameworks may be implemented to support the ethical
outcomes of everyday practice.
We can predict that increased technological sophistication will require increasingly
complex understanding. We can also predict, based on past experience, that the
landscape of prenatal screening is moving inevitably and irrevocably towards more
medicalised, technology driven pregnancies. Given these predictions, it is clear that
existing protocols for educating and building understanding, which are already
inadequate, will become even more unsatisfactory. Therefore, actively embracing a
transformative educational response which elevates the importance of learning and
knowledge development in the context of prenatal screening is crucial to securing
robust ethical care within the institutional medical setting into the future.
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Chapter Summary
As previously flagged, the crucial ethical difference between consent and ‘informed’
consent is the incorporation of some form of education or learning opportunity, with
the transfer and construction of the appropriate knowledge and understanding prior
to accepting any medical intervention. “Informed consent” is, therefore, given from
a position of reflective understanding after careful consideration and deliberation of
the central facts relevant to each individual. Hence, the moral integrity of informed
consent in clinical care is inextricably linked to patient education.
The experiences of most mothers in this cohort illustrated that current institutional
approaches to patient education, when they exist at all, are often approached as an
episodic or finite event, considered for the express purpose of attaining a ‘one off’
agreement or consent. Practitioners presented a similar story, acknowledging the
problematic and often inadequate informed consent protocols. While many
practitioners illustrated sound educational strategies in their own practice, they
recognised that ethically appropriate levels of informing may not be the universal
norm.
In terms of strengthening education processes within clinical care, the work of
educationalist Malcolm Knowles (1970, 1990; Knowles et al 2005) may provide a
workable template for reform, through emphasising the different considerations and
requirements of successful adult education. Knowles (ibid) recognises that education
is an ongoing process firmly embedded in time, history, relationships, personal, and
institutional contexts and the prior understandings held by the learner. Approaching
informed consent as an administrative ‘event’ may create a fundamental tension in
how patient education is approached clinically, and may stifle the application of
appropriate educational strategies. Knowles’s educational model is founded on the
belief that the developmental capacities of adult learners demands developmentally
responsive educational strategies.
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While transmissive and compartmentalised ‘instrumentalist’ views of education
have significantly fallen from vogue among educators, being replaced by more
learner-centred strategies, the educational strategies in the health care setting as
described and experienced by many of participants of this cohort reflect
authoritative and transmissive modes of informing. For informed consent to be
supported clinically, these must be replaced with more adult learner centred
strategies that embrace and acknowledge the embedded, relational, dialogical, and
culturally and historically situated nature of learning, from an adult perspective for
patient and practitioner. The six pre-conditions that support effective adult learning
suggested by Knowles et al (2005) discussed earlier may provide a workable
template to increase awareness and foster such reform. While Knowles has been
critiqued for making the distinction between adult and other learners rather than
viewing all learners on a continuum, and many of Knowles (1970, 1984, 1898,
1990) observations equally apply to any learner centred mode of education, Knowles
et al’s (ibid) six key points provide a practical starting point and focus for reflection;
• Identify the need to learn.
• Integrate existing experiences.
• Mutually define learning goals.
• Build mutual trust and respect in a collaborative, cooperative partnership
with shared responsibility
• Allow the learner to control and negotiate how progress is defined.
• Provide a comfortable physical environment.
Learning for the purpose of consenting to clinical interventions must be recognised
as more complex than the habitual dispensing or disclosure of disconnected
information. Rather it should be viewed as an active and mutually enriching
partnership, nurtured in a supportive, relational environment that is anchored to prior
knowledge and existing moral frameworks. While some of the conditions above may
seem beyond our reach, in accepting the link of ethical practice to patient education,
we are obliged to challenge current models of resourcing and staffing and to contest
many of the overarching and unjust financial constraints imposed by the managerial
focus on business models of care delivery that limit our capacity to fulfil the
fundamental ethical obligation to educate. Although not explicitly recognised, the
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emerging clinical framework of ‘patient-centred medicine’ shares a strong
philosophical orientation both with the phenomenological account of ontology and
the andragogical educational framework proposed by Knowles. The shared
ontological basis of these three areas, the patient-centred model of care, the
phenomenological understanding of the ethical and the andragogical framework of
education collectively complement the ethical intentions of informed consent.
As the practice of prenatal screening is shaped by individual and organisational
factors, the ethical and educational transformation of practice will ultimately depend
upon the moral integrity and orientation of the institutions we construct, in addition
to the values, capacities and conduct of those individuals who function within them.
The following chapter will explore potential areas of transformation, premised on
the understanding that transformation must occur at both the individual and the
institutional levels simultaneously, as in reality, they are inseparably enmeshed with
each partially defining, enabling, and/or constraining the other.
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CHAPTER 10
TRANSFORMING PRACTICE
‘It's better to light a candle than to curse the darkness’
Eleanor Roosevelt.
‘We need to think less about doctrine and principles and the rules to govern
behaviour, more about education and institutions – and what sort of people
we produce’(Kass, 2002, p.73).
Introduction
The experiences of participants explored throughout this work illustrate that
voluntary, understood, and informed consent was not routinely achieved in practice
for this cohort of mothers. In line with observations made elsewhere, the commonly
experienced clinical conditions of prenatal screening created moral harm to some,
imposing avoidable distress, alienation, and anxiety. Furthermore, to mothers who
unconditionally valued their expected child, the negative attitudes towards children
with potential disabilities inherent within screening protocols caused deep affront.
As discussed in Chapter Eight some literature suggests that the potentially avoidable
anguish and suffering created were simultaneously generated and alleviated in the
self perpetuating dynamic of testing. While small increases in anxiety levels may be
beneficial, illustrating appropriate levels of engagement and attention (Kleinveld et
al., 2006; Stephenson, 2006), a deep and sometimes ongoing sense of distress was
articulated95F
96 by some women in this cohort. This distress has been observed and
described in other studies as akin to a ‘major depressive episode’ (Leithner et al.,
2004) or ‘serious psychological harm’(Goel et al., 1998). Cristofalo et al (2006)
have noted that the sense of loss and worry reported by some women can remain
long after testing ceases 96F
97. The long term impact of such psychological distress
96 Though not formally measured. 97 Almost 30% of women in Cristofalo et al’s 2006 study imagined future health implications for their child long after they had been ‘cleared’ following the revelation of benign CPC’s (Cristofalo, DiPietro, Costigan, Nelson, & Crino, 2006).
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remains under researched suggesting a need for additional research in this area (
Boyd et al., 1998, p.1581).
While practitioners in this cohort universally expressed that they valued informed
consent in their patients, most struggled with their sense that patients often remained
ill equipped or under informed about the purpose and potential outcomes of
screening. Blurred responsibility among practitioners for the provision of care and
education, mothers’ unquestioning compliance with misunderstood routines, and
poor basic knowledge of the tests and their value or relevance by practitioners and
mothers alike, were observed in this cohort. Additionally, the procedural pressures
of routine testing obfuscated ‘voluntariness’ and the promotion of the presumed
benefits of testing further collided to undermine some women’s capacity to give
their informed consent. For practitioners, these aspects similarly constrained their
capacity to adequately inform. Although this limited research makes no claim that
the experiences of individual participants are representative or generalisable to the
whole population, if the accounts offered and outlined throughout this work are
indeed typical, and this may be determined by extended research, the routine
everyday medical intervention of prenatal screening, as described and experienced
by the participants of this cohort, suggests a local practice in need of ethical
transformation.
Chapter Nine recognised the central role of education in transforming some of these
entrenched practices. It was suggested that, as the moral integrity of informed
consent rested upon the possession of reflective understanding prior to consenting,
patient education was ethically essential. It was also proposed that robust
andragogical approaches to adult learning (Knowles, 1970, 1990; Knowles et al.,
2005) provided a potentially workable template from which to facilitate such
education clinically. However, while appropriate education may be a critical factor
in the ethical deliberations of individuals, underlying systemic problems and
contextual biases of institutionalised medical practice tacitly remain. Therefore,
while supporting patient autonomy through education is a valuable and important
ethical aim that should be faithfully pursued, ultimately, all decisions are
contextually constrained, relationally embedded, and communally moderated in the
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framework of broader societal customs and structures of medical practice. Indeed, it
is often the tension between individual moral frameworks and communally endorsed
social and moral frameworks that ultimately contribute to the moral distress
experienced by individuals. These communal frameworks include the master
narratives of ‘good’ mothering (good mothers test), the discourse of tragedy
surrounding disability (to be avoided at all cost), the elevation of rationality as the
privileged ethical arbiter (it is irrational not to ‘prevent’ disability) and the socially
embraced perfectibility doctrine of technology (science both defines and delivers us
from the unacceptable).
We cannot compartmentalise and segregate educational strategies and outcomes
from the multiple layers of embeddedness in the social, philosophical, cultural,
personal, and institutional contexts of medical practice in which health care is
situated. As noted earlier, Toulmin (1990, p.201) remarks,
‘We may temporarily shelve the contexts of our problems, but, eventually,
their complete resolution obliges us to put these calculations back into their
larger human frame, with all its concrete features and complexities’.
Accordingly the ethical and educational transformation of practice will ultimately
depend jointly upon the moral integrity and orientation of the institutions we
construct, in addition to the values, capacities and conduct of those individuals who
function within them. These two potential areas of transformation, the institutional
and the individual, will be considered in more depth.
Transforming Institutions
The transformation of institutional structures within which prenatal care is situated
may be reformed in three key structural areas these being (1) the institutional
orientation and organisational infrastructure with respect to ethics; (2) the promotion
of institutional reform in areas of internal and external policy direction, including
overarching legal frameworks and production/business models of care; and finally
(3) by actively questioning the ideologically driven faith in science and technology
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that values and promotes technological intervention. Simultaneously addressing
these areas may lay the foundation for a responsive ethical environment in which
personal capacities of staff and patients may be built, and in which the practical
realisation and support of the ethical may be genuinely facilitated.
Transforming Institutional Approaches to Ethics
‘Medicine being simultaneously the scientific and humanistic study of man
(sic) cannot escape being based in an explicit or implicit philosophy of
human nature’(Pellegrino, 2003, p.10).
As Edmund Pellegrino notes above, an ‘explicit or implicit philosophy of human
nature’ inevitably prefigures how ethics is operationalised in medical care. The
transformative process thus necessarily begins with the ethical, as it is within the
framework of the philosophy of human nature that fundamental insights into the
nature of human being and becoming, which is the core of ethics, may be expressed
and understood. As any medical condition is firstly embedded within the human
condition, a robust and resonant framework of understanding this human condition
must ideally prefigure any ethical conversation in the applied clinical setting.
While the growing profile of bioethics in recent decades has arguably increased
awareness of ethical issues such as promoting patient autonomy, preserving
confidentiality, contesting paternalism and illuminating asymmetrical institutional
power dynamics, many practitioners appear to harbour a great unease about the
relevance of the dominant principlist or rationalist ethical frameworks commonly
encountered (Caplan, 1999; Hoffmaster, 1991; Kass, 2002; Komesaroff, 1995;
Pellegrino, 2003). In approaching ethics as a detached and theoretical discourse,
dominated by ‘assumptions, conventions and imperatives’ (Komesaroff, 1995, p.64),
the increasingly specialist bioethics discourse often seems removed from the
immediate, day to day concerns of medical care. The well catalogued response of
positioning ethical dialogue and deliberation within carefully demarcated
‘dilemmas’ has progressively limited ethical conversations within restricted and
increasingly predefined possibilities. Often, extreme examples of what May (1994)
describes as ‘headliner quandaries’ are elevated, while discussion about the ‘micro-
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ethical’ (Komesaroff, 1995) or underlying ‘moral sensibilities’ (Kass, 2002) of
everyday practice, injustices, and relationships becomes silenced. Consequently, the
critical questions of ethics have become largely epistemologically based, framed as
abstract intellectual puzzles to be solved in the rational and technical realm of
philosophical ‘experts’.
Perhaps, not surprisingly, the effectiveness of this popular approach in responding to
the particular, deeply contextualised and immediate concerns of practitioners and
patients alike is regarded by many clinicians as lacking, with the increasingly
specialist discourse of bioethics seeming disconnected from the immediate, day to
day concerns (Komesaroff, 1995). Thus the social, political, and cultural
determinants of which cases are deemed to be morally relevant for discussion under
this model remain tacitly unacknowledged. Instead of opening medical practice up
to ethical reflection and enquiry, the narrow frameworks prevalent in much
institutional bioethics have perhaps unwittingly been instrumental in closing down
the ethical analysis required.
Komesaroff (1995) further observes from his perspective as a physician that ethics
should not be regarded as a technical expert discussion, but rather ethics is ‘what
happens between every patient and every doctor everyday’ (ibid, p.68). Expanding
on this claim, clinical ethics may be equally regarded as what happens in every
human encounter in the health care setting everyday, be that nurse-patient, patient-
patient, physician-administrator, orderly-social worker, or family member-physician,
and so on. The philosophical orientation, language, and organisational structures to
support an accessible and embedded ethics of the everyday in the clinic must be
open to accommodate the unique experiences and context laden realities of all
stakeholders. Margaret Somerville further notes:
‘It’s not that reason, common sense, objective facts, and science are
unimportant to ethics – on the contrary. Rather the problem is that they are
assumed to be the only matter important to ethics’ (Somerville, 2006, p.2).
While overarching moral concepts or principles are not rejected, they are more
appropriately regarded as anchor points from which to direct and guide ethical
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conversations, conversations which rightfully begin and end with the deeply
contextualised relational encounters between staff, patients and the organisation
(Beauchamp, 1999; Pullman, 2005; Walker, 1993). This, inevitably, will consist of
more than the rational analysis of the ‘neutral’ facts97F
98.
Hoffmaster (2006, p.43) further contests the dominant philosophical account noting
that vulnerability and interdependence, rather than rationality and individuality, are
the defining characteristics of the human condition. Hence, any ethically relevant or
resonant foundation must embrace the ontological understandings inherent within
the hermeneutic phenomenological account of the self as embedded, relational,
dialogical, interpretive, historicised and, thus, unique. An orientation to ethics such
as that proposed in Chapter Two which embraces context, considers particularity,
and actively incorporates the role of prior experience into current interpretations thus
lays a more coherent and shared moral foundation of understanding, the ‘implicit
philosophy of human nature’ acknowledged earlier by Pellegrino (2003). The
foundational ontological understandings inherent within the hermeneutical
phenomenological gaze therefore offers a more resonant, robust, and consistent
ethical framework from which to sensitively negotiate patient and practitioner
vulnerability in medical care.
As discussed in Chapter Nine this ethical stance also forms a more realistic basis
from which to support andragogical approaches to education, while prefiguring a
more appropriate ethical base from which patient-centred medicine may be
practically supported. Affecting such a shift in ethical orientation, however,
demands changes to the organisational infrastructure which supports and signals
expectations of ethical behaviour to staff and patients. Critically, it also demands a
changed stance towards practitioner ethics education. These two potential areas of
transformation, organisational infrastructure and practitioner education will now be
more fully considered.
98 One such systematically inclusive ethical decision making tool is the ‘Ethical Matrix’, first outlined by Beauchamp and Childress in 1994. Kaiser and Forsberg (2001) provide a practical account of its use, as applied to a national project assessing future directions for the Norwegian fisheries.
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Transforming Practitioner Education
Chapter Two explored the dominant institutionally entrenched views of how ethics
‘ought’ to function in practice, suggesting that these views emanated from various
entrenched, tacitly accepted, and socially reinforced frameworks of medical practice.
For example, the accepted belief in the presence of an overarching moral order that
may be accessed through application of the right rules or laws, or the belief that all
knowledge is valuable, or that science is by definition neutral and objective, are
significantly, though for the most part unreflectively, incorporated into health
practitioner ethics education. Hence, an initial place to open these pre-existing
presumptions to challenge and possibly to transform is in undergraduate,
postgraduate and ongoing health care professional ethics education.
Much health care ethics education centres upon the reductionist, though popular
principlist98F
99 approach to ethical decision making in which the four principles of
Beauchamp and Childress (2001) are methodically applied to various problems or
dilemmas (Cowley, 2005; Liaschenko, Oguz, & Brunnquell, 2006). This approach
tends to promote a particular type of case for which a technical, principlist approach
provides a clear answer, affirming this prescriptive mode of decision making as
reliable and successful. While the ‘tragic case’ (Liaschenko et al., 2006) mode of
teaching ethics is culturally and institutionally appealing, fitting well with the
production of education en masse, it provides limited avenues to highlight the
underlying personal, institutional, social, and cultural determinants that shape the
everyday moral agenda for patients and practitioners alike and, perhaps unwittingly,
entrenches the view that ethical deliberation is best left to ‘experts’. Ultimately,
examination of why some cases rise to prominence while others linger silently
remains unexplored in these often superficial or sterile ethical debates (Caplan, 99 See Beauchamp and Childress (2001). While Beauchamp and Childress give a full and detailed account of each principle, they strongly caution against the use of principles as a canonical script and clearly claim there ought to be no hierarchy in their application. Rather they urge a comprehensive and holistic consideration of each principle within each context. Dilemmatic cases such as the 2005 Terry Schiavo, end of life case in America, the 2005 case of the Queensland woman who had two sets of premature quads within 2 years using Assisted Reproductive Technologies, and the 2006 case of ‘Ashley’, the ‘pillow angel’, a nine year old girl from Seattle, who suffers from static encephalopathy, whose parents requested and received growth inhibiting hormones and surgery to stunt her physical growth and enable them to care for her more easily are routinely framed as a competitive ethical dilemma between the autonomous right of the individual, positioned in conflict with another mutually exclusive principle, such as justice or non-maleficence.
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1999; Cowley, 2005; Hoffmaster, 1991; Walker, 1993). Liaschenko et al (2006,
p.672) further claim that taking the dilemmatic case approach to ethics education is
‘of limited value because it limits understandings of moral problems to dilemmas;
negates the moral agency of the student; encourages solutions that are merely
intellectual; and suggests that ethical encounters are a matter for experts’.
Another potential consequence of imparting reductionist models of ‘doing’ ethics
clinically is the increasing trend noted by van den Brink-Muinen et al. (2006.p.334)
for practitioners to regard their ethical obligations solely in terms of seeking consent
in minimalist legal terms from their patients, a trend accompanied by a decreasing
tendency to clarify the ethically critical levels of patient understanding. Indeed
Braddock et al (1997, p.343) reported that practitioners checked for patient
understanding in only 2% of consultations.
Komesaroff (1995, p.67) noted earlier that ‘the vast majority of clinical decisions
are taken in an ethical environment in the absence of any obvious dilemma’. Thus,
conditioning practitioners to understand the ethical within a limited dilemmatic
event framework ultimately impoverishes their human understandings and thus fails
to equip them for the ongoing process of guiding morally sensitive interactions with
possibly vulnerable ‘patient others’ that lies ahead. When ethical debate and
education focuses on extreme examples, an insidious consequence, Kass further
argues (2002, p.2), is that the morality of the commonplace – which is the heart of
the ethical - becomes marginalised,
‘The use of surrogate wombs or the definition of death or guidelines for
terminating life sustaining treatment captures most of the attention- not
surprisingly - but the morality of ordinary practice is largely ignored. Yet
every encounter is an ethical encounter, an occasion for the practice and
cultivation of virtue and respect, and between doctors and patients for the
exercise of responsibility and trust on both sides. How do physicians speak
to patients? Do they have reasonable expectations of their physicians? How
do we, individually and culturally, stand with respect to rearing children,
sharing intimacies, revering life, facing death? In the absence of attention to
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these more fundamental and pervasive moral postures and practices, is it
reasonable to expect that an ethics for the extreme cases will be sensibly
worked out even in theory, let alone be successful when ‘applied’ to
practice?’
Thus, there is a strong need for graduate, undergraduate and ongoing professional
ethics education to be ‘re-humanised’, and for ethics education to focus on preparing
practitioners with the necessary hermeneutical insights and sensitivities to enable
them to become responsive ethical interlocutors who might be attuned to the unique
everyday ‘moral sensibilities and affections or habits and customs of moral agents’
as Kass (2002, p.63) suggested earlier. Framing moral understanding in health care
practice as existing between embodied and embedded ‘doers’ in relationships that
are shaped by the dynamics and flow of power inherent in that setting, thus provides
a more meaningful and empowering ethical scaffolding. Ethical encounters are
rather understood and approached as deeply situated human encounters. While these
encounters are guided by the frameworks of values, principles and virtues
appropriate to the caring setting, attention to the contextual particularities and
recognition of the important role of identity and individual subjectivities become
permissible in seeking sensitive and practical outcomes. In essence, health care
ethics must be taught as a transformative, relational, and engaged endeavour. The
role of the practitioner is not one of ethical ‘expert’ or adjudicator; rather, the
practitioners’ moral obligation to themselves, their patients, their practice and their
organisation is to be and become an informed and sensitive interlocutor within the
multiple relationships that define the health care setting.
Instilling such an ethical stance begins with the key revelations that:
• The human condition is one of being and becoming.
• The human self is embedded in multiple contexts of history, culture,
language, relationships, biology, time and spiritual horizons. The unique
culmination of these layers shapes unique moral frameworks for patient and
practitioner alike and defines the multiple ‘goods’ we affirm.
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• The illness experience (or illness experience in one’s child flagged by
prenatal screening) can fracture these goods; hence illness, or the threat of
illness, is a time of multiple vulnerabilities.
• Vulnerability calls for a caring response from another, as Hoffmaster notes,
‘vulnerability marks the limits of individualism’ (Hoffmaster, 2006, p.43).
The burgeoning re-emergence of the ‘medical humanities’99F
100 within health care
ethics education provides some practical leadership in enhancing practitioners’
humanistic and ethical understandings of themselves and their patients. Similarly
grounded in a hermeneutical view of the ethical, the medical humanities invite
exploration of individual illness experiences through creative works such as
literature, poetry, music, biography and art. Thus, we are invited to consider the
unique experience of each person, as opposed to viewing the ethical response in
terms of ‘general principles and typical patients’ (Begley, 2003, p.127). Ultimately
however, the transformation of health practitioner education rests upon more than
the simple incorporation of humanities centred activities into the existing
frameworks (although this is a powerful strategy), but by also adopting the
principles of andragogical learning, encouraging practitioners to participate in and
define what they ‘need to know’, by incorporating their prior experiences as a
starting point for ongoing ethics education, and by enabling them to share
responsibility for their own learning as a personally transformative, dialogical and
reciprocal encounter.
The Ethical Role of Patient Educator
A fundamental, though perhaps under-acknowledged, ethical role that practitioners
play is one of patient educator. As illustrated in Chapter Nine, patient education is a
moral imperative; hence, practitioners must be equipped with a fuller appreciation of
the significance of this crucial role. In order to fulfil this role successfully, however,
practitioners must be prepared with firm understandings of educational philosophy
and learner-centred andragogical teaching strategies as these are most fitting in
100 See for example Begley, 2003; Biley & Champney- Smith, 2003; Collett & McLachan, 2006; Darbyshire, 1994; Grant, 2002; Gull, O'Flynn, & Hunter, 2002; Macduff & West, 2002; McKie & Gass, 2001; Milligan & Woodley, 2008; Pullman, Bethune, & Duke, 2005; Weisberg & Duffin, 1995.
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facilitating the levels of reflective understanding that patients require in order to give
their informed consent.
In addition to an ethical stance anchored in the lived and living human experience,
understandings of the ethical import of educational philosophy and a commitment to
patient-centred care, practitioners must also possess relevant technical skills and
medical knowledge. While limited research exists on practitioners’ knowledge base
in prenatal screening, the link between a practitioner’s knowledge and their
subsequent ability to appropriately educate, inform and prepare women for testing is
an obvious one. The research that does exist paints a disquieting picture of a practice
in need of attention, and of practitioners in need of support. Sadler’s 1997 survey
undertaken in the United Kingdom of health professionals’ knowledge of serum
screening for Down syndrome, for example, concluded that,
‘Women need accurate information to give informed consent to serum
screening. Most health professionals likely to be involved in antenatal care
in this district do not fully understand the test and are thus unlikely to
provide such information’ (Sadler, 1997, p.176).
Indeed only 14% of obstetricians in Sadler’s 1997 study (ibid) correctly answered
over half the survey questions. While General Practitioners were the most common
initial source of women’s information they scored ‘significantly less than other
groups’ (ibid, p.176). Similarly, Tyzack and Wallace (2003) noted that less than
15% of practitioners provided accurate information on the characteristics of
screening tests regarding Down syndrome, concluding that, ‘the majority of health
professionals in the present survey are not providing their patients with accurate
information about screening in an age-specific manner’(ibid, p.220). More recently
in the United Kingdom, Qureshi, Armstrong, & Modell’s 2006 survey of the GP’s
role in prenatal genetic counselling revealed that GPs displayed,
‘lack of confidence in providing basic prenatal genetic
advice………..indirectly demonstrating a lack of confidence in providing
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prenatal advice about the risk of Downs Syndrome’ (Qureshi, Armstrong, &
Modell, 2006, p.109).
Bramwell and Carter (2001, p.139) observed that, when understanding of genetic
anomalies or test accuracy was low, in lieu of providing accurate information on
which a patient could assess and give informed consent, some practitioners offered
information based purely on their own personal judgment of the value of the testing
under consideration. Such personal beliefs held by practitioners often reflected
overestimation of the efficacy and usefulness of screening (ibid).
Accounts offered by some practitioners, and previously discussed throughout this
research, identified similar knowledge gaps in GPs’, suggesting that GP’s may be ill
prepared for the specialised prenatal counselling role. This situation augurs poorly
for the future, as prenatal screening becomes progressively more focused on genetics
and becomes further embedded within an increasingly routinised framework of
antenatal care. As Qureshi et al (2006, p.109) reasonably predict, ‘in the near future,
[GP’s] will be exposed to increasing numbers of antenatal genetic screening tests’.
Given the apparent lack of preparedness or support that GP’s experience, coupled
with the growing complexity of specialised roles that they are expected to fulfil, the
ongoing education and support of practising GP’s remains an area of growing
concern, but also of potential reform. While educational outreach to practitioners is
vital, the problem of how to reach and support those most in need persists as it may
be difficult to engage practitioners in the ongoing education they need. One Midwife
explained, Many GPs have never had to deal with it before, and even within nursing, you don’t put people into areas to do things that they don’t have the skills to do. I certainly wouldn’t want to be put in cardiology……..The assumption is made from the outset that they know it, they do it, they are GP’s, they just do it……………….the assumption is made I guess by the policy makers in the organisation…..[we] need to assess what sort of education is needed….how is it going….and pick up on any comments or complaints that come in. How do you reach the ones that you need to reach because there are a lot who do know? How do you find the ones who don’t know about it? There’s the cost factor too…..you can only send out so much stuff……and the time to prepare so much information…… it’s a difficult task. Last year one of our education sessions was particularly focused on prenatal screening and we had experts from here and a lot of excellent information and that was great and it was well attended, for an education session, they get their continuing education points for it. It was well attended, so….. we had around 50 GP’s………..and there are in excess of 700 in the Brisbane North area alone [7%]. Those are the numbers that turn up to these things, and to a large extent, the ones who turn up are probably the ones who have the interest and have a lot of the knowledge anyway………so….. I do feel that there probably are gaps……….big gaps. Midwife 3
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Exploration of what such practitioner education would consist of, or how it could be
most effectively delivered, is not within the scope of this research. However, this
research certainly flags practitioners’ ethical and technical education as potential
areas of ongoing transformation that is likely to have significant impact upon ethical
outcomes for women who engage in prenatal screening.
Open Moral Spaces in Institutional Care
While ethical awareness and sensitivity in practitioners and institutions are sought
and valued by patients, practical considerations of how to nurture the qualities
desired, or how to implement the organisational infrastructure required to support
meaningful and accessible ways of approaching clinical ethics, are less apparent.
However, as individual moral behaviour and agency is significantly shaped by the
normative structures, policies, and organisational procedures, the organisational
ethics infrastructure created (or omitted) significantly influences all stakeholders in
achieving the ethically coherent outcomes desired (Barnett & Vaicys, 2000;
Silverman, 2000).
As positive ethical outcomes for patients have been shown to be significantly
influenced by organisational factors rather than by the professionalism of individual
practitioners alone (Renz & Eddy, 1996; Wildes, 1997 cited by Silverman, 2000),
the healthcare organisation , public or private, must be recognised as having an
active role in shaping the wider ethical climate in which its employees and patients
interact (Silverman, 2000). Suggesting that the hospital organisation is not simply a
neutral location in which independent actors fulfil their various individual roles and
responsibilities, Silverman (ibid, p.205) further claims that
‘ethical issues of the clinic are well beyond the control of the individuals
involved, as the delivery of patient care is situated in a web of organisational
patterns, relationships, structures and processes. Hence, rather than
individual professionalism, the moral dimensions of patient care need to be
conceptualised as being largely influenced by organisational dynamics’.
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Hence, institutions need to respond ethically at an organisational level as they have
the capacity to mediate and share ‘the same range of moral responsibilities and
obligations that have traditionally been implicit in the relationships between
physicians and patients’ (ibid, p.204). The type of institutionalised, normative
structures, policies, and procedures endorsed informs employees and patients about
the priorities and intentions of the organisation with respect to the resolution of
ethical issues (Barnett & Vaicys, 2000; Silverman, 2000). The ongoing
transformation of the ethical in health care, therefore, jointly depends upon the
moral integrity and orientation of institutions in conjunction with the values,
capacities, and conduct of those individuals who function within them100F
101.
Philosophically, the understandings of ontology inherent within the
phenomenological paradigm previously indicated in Chapter Two recognise all
stakeholders as embodied, embedded, interpretive, relational, and dialogical.
Margaret Urban Walker’s (2003, pp.59-70) ‘expressive-collaborative’ approach to
clinical ethics, as explored earlier in Chapter Two, suggests that forging a genuinely
collaborative ethical response in institutional care requires the creation of inclusive
and ‘open moral spaces’ where ‘actual dialogue replaces hypothetical methods and
fixed prior constraints on admissible concerns’ (Walker 2003, p.75). In other
words, Walker compels us to commit to entering each other’s narratives as a means
of enhancing our shared ethical understandings, having earlier described the process
of building an ethical response as ‘not a solution to a puzzle, but rather an outcome
of a negotiation’ (1993, p. 36). Again, the promotion of an expressive-collaborative
stance recognises that the ethical, like the educational, is an ongoing and evolving
process of negotiation towards an end point, rather than an isolated event.
While rational deliberation may form a critical part of how we ascribe order and
meaning, moral understanding is primarily realised within the possibilities and
limitations of the multiple layers of our embedded, embodied reality. As the ethical
is characterised in individual lives by a plurality of ‘goods’, located within the
101 A practical organisational framework to support the nurturing of ethical cultures in institutional health care based on educational support, practical consultation advice and policy reform is proposed by Milligan and Winch (2007).
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complex interweaving and overlapping of uniquely constructed (and sometimes
professionally moulded) moral frameworks, there is a need to open shared moral
spaces institutionally. The creation of a shared moral space of interlocution is an
ethical imperative as it is within these spaces that the pluralities of understandings of
what is ethically ‘good’ may be built and the best moral outcomes maybe negotiated
as part of a continuing and evolving moral conversation. Adopting this expressive-
collaborative view of institutionally embedded ethics facilitates the creation of
inclusive and open moral spaces, in which ethical conversations rightfully begin and
end with individual subjectivity rather than objectivity, in which particular
contextual and situated knowledge, rather than generalised and abstract meanings,
forms the basis of the organisational ethical discourse. Indeed, it is precisely these
shared moral spaces that invite individuals to open themselves to the ethical plight
and perspective of ‘the other’, thus widening the scope of ethically permissible
conversations and laying the foundations of a more inclusive framework for
operationalising ethics in the clinic.
The provision of such a space institutionally requires leadership, commitment, and
financial support. It further requires that the dominating production models of care
delivery, which have encouraged the adoption of reductionist understandings of
ethics, be challenged as when staff remain overcommitted and under resourced the
time or the place for critical ethical and educational conversations become incurably
undermined. Finally, however, Meyers (2007, p.35) cautions, ‘merely creating a
venue for everyone to speak cannot equalise the balance of power and produce
genuine consensus’. Rosemary Tong similarly counsels that where ‘all voices are
not heard, … the moral truth does not emerge’ (Tong, 2002, p. 420). Any physical
space must, therefore, be accompanied by the appropriate intellectual or
philosophical space in which the attitudinal stance advocated throughout this work
of embracing ethics as incorporating the appreciative, the hermeneutic the appraisive
and the transformative. Finally, it will be a space where ethics is explicitly
recognised as an ongoing conversation between informed, ethically sensitive and
hermeneutically aware interlocutors embedded in a web of dynamic relationships, an
expressive-collaborative space (Walker, 1993, 2003).
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Transforming Policy
Health care policy, whether imposed externally from government directives or
generated internally within particular institutions, significantly shapes the available
options, expectations, and resources with respect to how (or even if) the ethical is
supported in practice. As previously indicated the organisational policies governing
the internal resourcing of procedures, of setting acceptable standards of care, or of
signalling expectations about which outcomes are clinically or morally relevant,
significantly contribute to the ethical landscape inhabited by staff and patients
(Barnett & Vaicys, 2000; Silverman, 2000).
In Australia, for example, access to government funded Medicare rebates for a
particular procedure signals communal endorsement, politically sanctioning and
legitimising the worth of such intervention. As the clinical geneticist noted,
Legitimising it in many ways means giving it a Medicare item number and that really makes the difference in terms of availability or access and uptake because part of that is consideration of how much these things cost……if you’ve got to put some dollars on the table, you have to show some level of commitment to wanting that test, but if it’s free or bulk billed under a Medicare item number, then it can happen without really…..your direct assent, in a sense. So cost is an important factor in terms of what is routinely offered. Clinical Geneticist.
Similarly, the levels of resourcing, staffing and time allotted to particular
consultations further delimit clinicians’ scope of practice by forcing them to reduce
and prioritise which aspects of screening will be given preference within the limited
time fixed. As one genetic counsellor noted,
Well…… in 15 minutes there’s not a lot of time …………….look it’s pretty much a technical discussion for good or bad………….it’s seen as very much an education of this is what it is…these are the type results it will give you. Genetic Counsellor 2
Lack of time was cited by several practitioners as negatively influencing their
capacity to engage in meaningful moral dialogue with women, as illustrated in the
following comments. Particularly inside this particular hospital, you know they don’t have an hour to talk with patients, in fact, they don’t even have 20 minutes to talk with a patient, and they have 10 minutes. How do you develop a rapport in 10 minutes? How do you determine what this lady’s thoughts are and steer your thoughts in line with hers? You don’t. Midwife 1
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There’s not the time or effort to put into women who need instant information, even although they have known they are pregnant for some months and have quietly ignored it. Really, GP’s are a bit the same; they are running that day to day stuff – how much time do they really have to teach women everything – they really don’t. Midwife 2
However, not taking the time may ultimately be counterproductive as the
constructive therapeutic and educational partnership that supports the ethical aims of
practice is undermined and patient outcomes suffer (Say & Thomson, 2003).
Empirical research is clearly showing that time spent establishing good
communicative partnerships often results in lower patient anxiety, increased trust
and confidence, higher physician and patient satisfaction, decreased referrals, and
decreased number of medical malpractice suits (Bekker, Hewison, & Thornton,
2003; Levinson, Roter, Mullooly, & Frankel, 1997; Stewart, 1995; Stewart et al.,
2000). However, Braddock (2002, p.351) challenges the assumption that patient-
centred consultations take longer, making the point that ‘the key issue may not be the
amount, but rather, the quality of the dialogue’. Similarly Bub (2004) advocates for
the ‘need to listen better not longer’ (Bub, 2004, p.64) and Waitskin and Stoeckle
(1976, cited by Wear, 1998, p.54) observed that clinicians overestimated the time
required to achieve informed consent from their patients by a factor of nine times.
Most of the authors cited above acknowledge that initial consultations to establish a
rapport and strong therapeutic relationship may take longer; however, the ongoing
benefits recorded suggest efforts to educate practitioners promote better
communication patterns and pay very practical dividends.
Additional policy considerations include the discourse of cost–benefit models of
analyses which often accompany the introduction of prenatal screening programmes
and policies. These may be interpreted as legitimising or lending communal
endorsement to the underlying eugenic presumptions inherent within such
procedures and are therefore ethically contentious. Some professional codes of
practice, notably the Australian Society of Genetic Counsellors (ASGC, 2000,
p.4) 101F
102 reject financially focused justifications for widespread screening stating,
102 See www.hgsa.com.au/images/UserFiles/Attachments/ASGCCodeofEthics.pdf (Accessed 8th August 2007)
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‘when aiming to reduce the burden of genetic disease in the community,
genetics services should strive to ensure that economic and other
considerations are of secondary importance to the physical and
psychological needs of the individual’.
While this statement suggests that financial implications should be given secondary
consideration, as Lippman (1991) noted earlier, the very telos of the practice of
genetic counselling is directive, premised on the belief that certain conditions
(although which particular ones is open to debate and individual interpretation) are
inherently too burdensome to bear. The promotion of screening protocols emerges
from a professional practice significantly defined by a discourse of risk which
presupposes an ideal of perfection that can be aspired to.
While production models of care significantly undermine the relationship building
and rapport required to foster an appropriate therapeutic partnership and to enhance
patient learning, perhaps the most influential policy shaping institutional and
individual practitioner behaviour with respect to prenatal screening protocols (and
hence, indirectly shape women’s experience and access to such screening) is the law
governing termination of pregnancy. In Queensland, termination of pregnancy falls
under the Queensland Criminal Code 102F
103, although lawful ‘therapeutic’ termination
can be procured on the grounds of threats to the physical health of the mother103F
104. A
direct consequence of this position as discussed in Chapter Six is an erosion of
transparency which stifles the collection of important public health information
relating to the numbers and reasons for termination as a consequence of prenatal
screening. Adequately informed reflection and ownership of this widely accepted
intervention is subsequently severely inhibited.
The widely accepted (or perhaps even expected by some) practice of termination
following an unwelcome prenatal diagnosis is therefore arguably out of step with the
103 See Section 224, 225 and 226 of the Queensland Criminal Code which states, ‘Any person who, with intent to procure the miscarriage of a woman , whether she is or is not with child, unlawfully administers to her or caused her to take any poison or other noxious thing, or uses force of any kind, or uses other means whatever is guilty of a crime , and is liable to imprisonment for 14 years’ (Shanahan, Smith, Ryan, & Carter, 2005, p.438) 104 Under Section 282 of the Queensland Criminal Code. Many practitioners cite psychological health as a mitigating circumstance; however, this is not specifically articulated in the law.
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law in Queensland as it currently stands. The placement of termination under the
Criminal Code places the emphasis on cementing a defensive legal justification as
opposed to one of exploring the human consequences, without fear of prosecution.
Often, the privatisation and individuation that flows from such a defensive legal
stance inhibits open reflection as many of these decisions become concealed from
the public discourse. Practitioners, too, find themselves occupying contestable legal
ground with respect to such terminations under what are predominantly ‘unclear and
complex state abortion laws’ (de Crispegny & Savulescu, 2004, para 5; MacFarlane
& Reid, 2006, p. 155). With the Criminal Code in Queensland clearly stating that
any procedure is to be a ‘surgical operation’, its purpose reserved ‘for the
preservation of the mother’s life’ (Shanahan et al., 2005, p.506), the grounds of
termination to preserve the psychological wellbeing of the mother due to fetal
abnormality remain contestable in Queensland law. Additionally, the presumption
that a disability in one’s child may cause inevitable, unresolvable psychological
harm of the magnitude that would endanger the mother’s life seems yet another tacit
endorsement and reinforcement of the master narrative defining disability as
tragedy. This lack of clarity potentially places practitioners in a grey legal area, one
which promotes fear and encourages the concealment and silencing observed.
Figures collated from the 1998 law reform in Western Australia and termination
rates recorded in South Australia where termination has been more readily
accessible since 1970 reveal that decriminalisation of termination appears not to
have opened the floodgates on abortion in those states. As previously mentioned,
both of these states retain similar, or even slightly reduced, per capita rates of
terminations compared to the Australian average104F
105 (Chan & Sage, 2005; Grayson et
al., 2005; Straton et al., 2006, p.3). While the intention of current laws in
Queensland may be to acknowledge and enshrine the value of human life, the
figures of state based comparisons suggest that the law as it stands does not appear
to be curtailing the practice of termination in Queensland105F
106. In spite of the legal
obstacles, abortion is available, in effect, on demand for any reason in Queensland.
The ethical consequence of this is that women are denied open and transparent
105 See footnote 69, p.180. 106 Although, there are numerous geographical and demographic factors that contribute to these figures that are not analysed in the documents quoted.
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access to relevant counselling services while overall community understanding of
the reasons and drivers of termination cannot be meaningfully addressed in a public
health sense as the appropriate data which would significantly inform such public
debate is not collected. Perhaps, and paradoxically, law reform with respect to
termination in Queensland may form a critical plank in creating a more ethically
transparent culture in which the links between prenatal diagnosis and termination
may be openly considered and assessed.
Injecting consistency into data collection and analysis.
The need to collect ‘evidence’ about particular medical interventions is increasingly
regarded as essential to reflecting upon and refining ‘best practice’ in clinical care.
Such an evidence base is broadly claimed to enable doctors and patients to make the
best possible clinical decisions (Kerridge, Lowe, & Henry, 1998) and is generally
regarded as a superior approach to refining and assessing practice than the more
subjective methods of the past (Bastian, 1994; Hope, 1995). Indeed, Solomon
(2005) argues that collecting and analysing appropriate data can ‘stimulate
individual and institutional moral accountability’ (Solomon, 2005, p.43) by creating
an essential feedback loop which simultaneously motivates individual reflection
while ensuring institutional accountability. Solomon (ibid) further notes, ‘without
data to prove that the problem is local - ‘here in our own institution’- it is too easy
to dismiss the problems as not relevant to us’. Thus, there is a strong need for local
institutions to commit to the collection, analysis, and incorporation of local
‘evidence’ on outcomes into policy direction and evaluation. Comments from the
practitioners of this cohort suggest that a significant, and negative, consequence of
the legal framework of termination in Queensland has been that the collection of the
data necessary to assess current policy and inform future policy direction lacks
transparency and is not coherently tracked in practice.
In terms of prenatal screening, Dr Kypros Nicolaides, who is credited with
developing and validating nuchal translucency as a robust screening instrument, has
commented that, when making any new screening test routine, it is critical that the
results and accumulated data are subjected to ‘rigorous audit’ (Nicolaides, Heath, &
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Cicero, 2002, p.308). Currently in Queensland, although nuchal translucency is
becoming increasingly routinised, the recommended ‘rigorous audit’ appears not to
be methodically occurring. While the efficacy of nuchal translucency screening is
known to be highly operator dependent requiring significant specialised training
(Braithwaite et al., 1996; Nicolaides, Snijders, & Cuckle, 1998), critical
comparisons between the numerous public and private providers in Queensland on
false positives, false negatives, predictive values, and consequential terminations
across facilities are not routinely collected or assessed. Hence, the critical evidence
base for reflecting upon whether such outcomes sit comfortably with the expected
medical goals and communal moral values is lost, as is the ability to assess the
extent of avoidable psychological harm being experienced by women.
However, it is not only data on nuchal translucency that is missing. Collation of data
on the number of terminations carried out due to suspected birth anomalies
identified prenatally is also missing from the Queensland equation as these incidents
are not recorded prior to 20 weeks when most terminations occur. As the
obstetrician explained: The lack of data collection on products of conception, from both miscarriage and termination, results in the loss of valuable demographic information about actual incidences of birth defects. These are not compiled at all if a pregnancy ends before 20 weeks in Queensland. Confidentiality means that these stats can’t be gathered and there is no legal requirement. Obstetrician.
National Medicare data tracking such outcomes is also incomplete as there is no
mandatory requirement to report terminations (Pratt et al., 2004). Similarly, post
mortem results to corroborate suspected diagnoses appear not to be routinely
pursued in practice and, thus, are not assessed in any meaningful way that could
inform practice. Previously published research elsewhere has shown that prenatal
diagnosis is fully supported by autopsy findings in 60-80% of cases (Laussel-Riera
et al., 2000; Ramalho et al., 2006, p.1087; Tennstedt et al., 1998), leaving 20-40% in
doubt. Hence, this information, which could provide a critical check and balance on
practice and be incorporated into informed decision making, remains lost to women,
practitioners, and policy makers. As Ramalho et al (2006, pp.1087-8) conclude, the
systematic evaluation of all cases of elective termination is imperative in assessing
the adequacy and worth of prenatal diagnosis. The following comments illustrate the
extent and consequences of the problem locally.
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We have no record….because what happens for example is a woman with a soft marker picked up in a private scanning clinic goes down to the Royal, and they may offer a CVS or amnio, they go back to their region because the Royal is a tertiary centre and they never know whether that woman decided to continue with the pregnancy or not… That’s the problem across Australia I think…you can’t get reliable data, Queensland I think doesn’t [collect data on terminations]… there is a maternal morbidity and mortality registry and also, I don’t know whether all labs have to send in products of conception or abnormal chromosome results…I don’t think they do..… I think there should be… so we could for example… when we give figures like there’s a 1:85 chance that a woman of 40 yrs old will have a baby with Down syndrome, is it really that? We haven’t included in our population the terminations and products of conception lost so we can’t include those figures….. I think it’s definitely a necessity. Genetic Counsellor 1
There’s no collection of information about the area of prenatal testing, and so if in Queensland for example, termination of pregnancy. …I think if we’re not collecting this information, then you can’t inform the community about what’s actually happening, so we can’t make decisions about whether that is good or not so good if we’re not aware of the data. I do think we should have better collection of things like prenatal tests. For example, in Victoria, uptake and outcome and it’s a quality assurance in many ways…is … much better developed and I think it’s a mistake of Queensland not to have some way of collecting information on numbers of amnio’s, what happens as a consequence because then the community doesn’t know and can’t meaningfully influence whether that’s a good thing or not. Clinical Geneticist
These comments illustrate that valuable data in determining what aspects of prenatal
screening practice are indeed ‘relevant to us’, are not methodically collected in
Queensland. However, as the clinical geneticist noted, while the lack of government
commitment to provide the structural and financial resources to pursue such data
analysis and incorporate it into policy development remains, the barriers to securing
an evidence based practice will continue. However, developing such a register
would require financial commitment, a commitment that is currently not a funding
priority as the clinical geneticist noted,
It would have to happen like a registry, like a cervical registry, Pap smear registry that data gather…….. You could for instance have the data from the pathology laboratories that receive amniocentesis samples or CVS samples because they are specialised tests done in relatively few labs that could be a point of contact, they could be de-identified. The other problem is that we don’t really have a way of following up in the fragmented health care system, as to what happens after ………so, in other words, if many of these tests are performed in the private sector, the follow up imposes costs on private doctors who would have to be paid to extract the data…so, it’s probably a resources issue as much as anything else. How would that be useful well…. informing the community about these issues would be of benefit…at least people would know what was happening ……I think it would be enormously useful …. I guess one of the problems is the quality of obstetrics services in general, with a lack of doctors employed to develop policies etc, so, there’s not been the infrastructure to systematically implement a program of that sort. So that’s a resources issue….Clinical Geneticist.
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Importantly, however, the presence of reliable evidence does not automatically
ensure that better decisions will be made (Goldenberg, 2005; Kerridge et al., 1998;
Stewart, 2001b), and the claim that evidence based medicine inevitably offers an
improved method of decision making may be difficult to discern, particularly in the
local context where current practice is so inconsistent. Additionally, medical
decision making inevitably draws upon a broad range of ‘knowledges’, filtered
through various interpretative frameworks such as the values of science, personal
experience and biases, or economic and political considerations. Not surprisingly,
like all human beings, practitioners, too, adopt definitions of evidence that
‘reflects their own interests and bias’ (Stewart, 2001, p.287). Kerridge et al (1998,
p. 1151) further note:
‘It is not always clear how practitioners integrate these factors into a final
decision, but it seems unlikely that medicine can ever be entirely free of
value judgments’.
Hence, while the word ‘evidence’ may suggest an unfaltering and steadfast reality,
there can be no objective standard in terms of how such evidence is collected or
interpreted and the consequentialist view implied by the term ‘evidence’ ultimately
may not accommodate the ethical and medical realities of clinical decision making
(Stewart, 2001). Many important outcomes may never be sufficiently calculated or
defined, and crucially, without evidence is not without value. Accordingly, the types
of evidence privileged in seeking an evidence based approach inevitably stem from
sources of ‘authoritative knowledge’, entrenching a hierarchy in which quantitative
measurable outcomes are elevated at the expense of qualitative or subjective
knowledge (ibid). Goldenberg (2005, p.284) concludes:
‘Popular thinking holds, however, that if it is neutrality that is desired,
numbers are the pinnacle. In this age of the ascendancy of health outcomes
research, where statistical analysis dominates health policy decision making,
“evidence” is tantamount to measure not meaning’.
In the final analysis, however, ‘evidence’, complete with its limitations and selective
interpretations, can still contribute valuable insights to the wider considerations of
the outcomes of testing by clarifying which questions ought to be raised by
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providing relevant supporting information to identify the gaps in knowledge that
might incorporate ethical reflection into the evolving policy debate.
In practical terms in Queensland, in conjunction with law reform, important steps to
address the procedural gaps with respect to data management and analysis could
begin with the mandatory reporting of terminations, and the adopting of a central
database modelled on that operating in South Australia (Pratt et al., 2004).
However, termination constitutes only one aspect and there are many areas of
practice in need of more careful deliberation and reflection. Additional areas which
would yield meaningful data with direct impact on the practice and protocols of
routine prenatal screening include,
• Differential collection of data relating to the numbers of terminations as a
consequence of prenatal screening.
• Collection of data tracking the outcomes of amniocentesis and miscarriage
rates and comparison between particular practitioners/institutions with
clinically expected rates.106F
107
• Injecting some consistency into following the outcomes of particular patients
who move between facilities or between the public and private sectors.
• Instigating some longitudinal studies correlating nuchal translucency results
to the long term health outcomes of children. These are needed to refine the
ongoing validity and interpretation of nuchal results and will also contribute
to updating of professional standards and accreditation.
• Instigating a central register collecting data on genetic make-up of products
of conception from terminations and miscarriages for verification of prenatal
diagnosis.
This list is by no means comprehensive, and while comment on the reporting,
analysis, and efficacy of health statistics is not within the scope of this research, the
role of managing this data more effectively has been flagged by several practitioners
in this cohort as having the potential to positively contribute to a more robust,
107 While assessing individual practitioners remains a controversial and widely debated topic, and there may be clinical reasons why certain practitioners appear to have less favourable patient outcomes, this may be a way of identifying those professionals in need of support, and may provide an additional safeguard for patients.
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evidence based practice and policy formation. While much of this data is potentially
‘available’, it is not currently being extracted or analysed in ways that have a
meaningful impact on developing understanding of the underlying social
determinants of practice or being incorporated into refining more ethically
responsive and coherent medical protocols.
Transforming Faith in Technology: Challenging the Sacred Narratives of Science
‘Man (sic) is gifted with pity and other kindly feelings: he has also the power
of preventing many kinds of suffering. I conceive it well within his province
to replace Natural Selection by other processes that are more merciful and
not less effective’ (Sir Frances Galton, 1908, from The Galton Institute107F
108,
formerly the Eugenics Education Society).
The development, funding and access to prenatal screening and other reproductive
technologies occur in a political space shaped by existing societal values, beliefs and
prejudices. In our Western, (mostly) educated, individualistic society, the political
space is one in which the pursuit of science has come to hold a kind of powerful
cultural imperialism (Lindemann-Nelson,2001). Where the biotechnology revolution
is presented as progressive, scientific, and rational, to stand in question is to be cast
automatically, and appositionally, as backward, prejudiced, and illogical. Hence, the
culturally revered pursuit of science and our belief in the perfectibility doctrine it
promotes reinforces our ongoing commitment to scientific progress.
Cultural images of biotechnology as trustworthy and ‘self correcting’ (Nelkin, 1996)
further deflect any critique of the practices of science, while the agenda of the wider
public discourse, according to Duster (2003, p.xiii), is shaped by experts such as
geneticists, medical specialists, lawyers, and researchers on one hand and critics on
the other, portrayed as ‘nannies, naysayers, know-nothings and luddites who put
their heads in the sand and try to stop the machinery of progress’. When collective
scrutiny and accountability is placed into the private realm of individual hands (via
108 The Galton Institute ‘exists to promote the public understanding of human heredity and to facilitate informed debate about the ethical issues raised by advances in reproductive technology’. www.galtoninstitute.org.uk (Accessed 4th February, 2006).
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autonomy and choice), the technological agenda becomes an essentially self
regulating body, closed off to public inspection. Under these conditions, which
Margaret Urban Walker describes as ‘privatisation’ (Walker, 1998, p.172), the
subtly coercive dimensions of these practices can become hidden from public view,
closing avenues of public reflection and critique.
While the technological revolution of science promises perfection or restoration, in
the case of prenatal screening, at least, the capacity to treat has not kept pace with
the capacity to diagnose. Additionally, true ‘prevention’ remains mostly
undelivered, largely beyond the grasp of current screening technologies whose
focus is centred on detecting a disability after it already exists. Explanations offered
in scientific terms are often incomplete, and the selective information deemed
worthy of pursuing is predominantly driven by what existing technologies can
measure, rather than what individual parents may want to know. Indeed, this
selective ‘knowledge’ is often tenaciously pursued, even when parents express deep
scepticism or disinterest as to its alleged worth as Penny, Elizabeth, Terri and
Danielle experienced. With respect to prenatal screening, such knowledge is rarely
pursued with the intention of offering a practical cure, other than the offer of a
‘medically indicated’ or ‘therapeutic’ termination.
While conceding that human behaviour is vastly complex, reductionist accounts,
including reductionist genetic accounts, of these complexities, often removed from
the cultural and social interpretive frameworks that shape them are interpreted as
scientific fact. Exploring the socially embedded nature of science, Duster (2003)
notes that behavioural geneticists are not looking for genetic markers of corporate
crime, toe size, or even eye colour – rather, they focus on entrenching existing
culturally endorsed preferences and prejudices, focusing, for example, on research
into disability, mental illness, intellectual impairment, intelligence, or athleticism.
While many human characteristics have a genetic component, the genetic
knowledge we chose to pursue is largely framed by social and cultural
determinants, hence, the pursuit of genetic information is not simply a neutral
scientific pursuit.
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However, faith in technology to deliver the longed for healthy child persists and
misunderstandings about the limitations of technology to secure this outcome
continue to permeate the prenatal debate. As discussed earlier, some commentators
now claim that it is morally remiss of a parent not to enhance their child genetically,
claiming it is ‘rational to want the best possible child’ (Aldred et al., 2003, p.337;
Savulescu, 2005). While medicine has undoubtedly made great advances in many
areas, future claims of genetic redemption must be tempered with an awareness of
the culturally situated human context into which these revelations are made. We
must ask ourselves if the eradication of human suffering is really achievable, or if
the embodied human condition is inevitably one of unpredictability, vulnerability,
interdependence, and fragility, as opposed to one of domination of nature through
science, individual power and invincibility. Perhaps recognising some of the story-
like qualities of the technological imperative may be an important anchor point in
developing a more accountable and humane use of technology.
Finally, while embracing the ‘technological imperative’ may hold great promise for
the relief of pain and suffering, improved quality of life, and enhanced well being
for many, the challenge remains of ‘how do we support the humane and ethical use
of such technologies, in ways that do not further re-enforce discriminatory and
stigmatizing practices?’ Our capacity to confront and address this question will
shape the ethical tone of the future.
Transforming Individuals
As previously indicated, individual and institutional transformations must occur
simultaneously and in partnership as in reality they are inseparably interwoven, each
defining, enhancing or limiting the other. The suggested institutional
transformations included broadening and redefining clinical accounts of ethics,
creating open and accessible ethical spaces and stances within the organisational
infrastructure, re-humanising clinical ethics education for practitioners, supporting
practitioner technical education, embracing law reform, and challenging the sacred
narratives of technological progress as categorically progressive and good.
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The remainder of this chapter will forward some suggestions for the transformation
of individuals who access care, or who work within the healthcare system.
Individual transformation may be facilitated through a commitment to collaborative
shared decision making between clinician and patient via effective communication
for patients and physicians alike. Such education and communication must be
informed by adopting accessible and appropriate methods of patient education based
on portraying an accurate and balanced picture of the aims and potential outcomes of
screening, presented in terms that are accessible and in line with the level of health
literacy of the patient. Each of these considerations will now be discussed more
thoroughly.
Enhancing Patient Participation – Supporting Shared Decision Making within a
Framework of Patient-Centred Care
There is a growing awareness among practitioners, increasingly cemented in health
care policy and law reform108F
109, that patients should rightfully have a central role in
contributing to decisions concerning their own health care and that they, for the most
part, seem to welcome this extended role (Bub, 2004; Coulter & Magee, 2003;
Elwyn et al., 1999; Fisher et al., 2005; Godolphin et al., 2001; Little, Everitt,
Williamson, Warner, & al, 2001; Say & Thomson, 2003; Stewart et al., 2000;
Stewart et al., 2003; Towle & Godolphin, 1999; Weston, 2001; Weston & Belle-
Brown, 1989). The intentional acceptance of more ‘patient-centred’ care, of which
shared decision making (SDM) is a key feature, better supports patient autonomy
and is also regarded as a more appropriate and respectful basis from which to form
strong therapeutic partnerships. Patient-centred care ideally incorporates five key
characteristics. These are:
• Adopting a multidimensional understanding of illness as a social,
psychological and biomedical event.
• Seeking understanding of the ‘patient as person’, exploring the impact of
illness on each individual patient. This includes eliciting the patient’s
feelings, expectations and understandings. 109 Examples include more open access to medical records, freedom of information legislation and policy reform such as that in the UK discussed in Fisher 2005.
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• Sharing power and responsibility by fostering more egalitarian relationships
within the medical setting and negotiating common ground in partnership.
• Forming a therapeutic alliance based on mutual trust. The therapeutic
alliance must also be mindful of health promotion and risk reduction.
• Incorporating awareness of the ‘doctor as person’ and the impact that
personal qualities may have on developing ongoing partnerships and on how
medicine is practiced.
(Little et al., 2001, p.469; Mead, Bower, & Hann, 2002, p.285; Stewart et al.,
2003)
The key elements of sharing power and building mutual trust in the therapeutic
partnership has generated a rising tide of commentary in the literature reflecting the
cultural shift towards SDM109F
110. While the recent systematic review of SDM
undertaken by Makoul and Clayman (2006) concluded there was no singular
definition, or commonly understood features, of SDM, they describe it as an
intentional mode of patient/practitioner interaction defined by a partnership of
mutual respect, of equally valuing patient preferences, of discussing all options,
benefits and risks, of facilitating appropriate education, and of negotiation,
deliberation and seeking of mutual agreement on health care decisions (Makoul &
Clayman, 2006, p.304).
Adopting shared decision making within a patient-centred model of care appears to
have many positive health outcomes such as reducing excessive diagnostic testing
and ongoing referrals, lowering the incidence of malpractice suits, reducing anxiety,
increasing patient compliance with treatment regimes 110F
111, improving health literacy
of patients and generally improving the health status of individuals (Levinson et al.,
1997; Stewart, 1995; Stewart et al., 2000). Such positive outcomes Stewart (2000,
p.799) claims are directly attributable to patient perceptions of being included as a
110 Other permutations and incarnations of SDM include Godolphin and Towle’s (2001) Informed Shared Decision Making (ISDM) and Trevena and Barrat’s (2003) Integrated Decision Making (IDM). 111 Goodwin-Johansson (1988) and Raffle (2001) caution against structuring patient education in overly optimistic terms as a means of ensuring ‘compliance’ as this potentially undermines patient autonomy and creates falsely high expectations of treatment. Irrespective of whether a patient ultimately accepts the preferred medical recommendation, the aim of patient education is to genuinely support reflective understanding.
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full participant in the clinical encounter rather than as a mere passive recipient of
treatment.
While the potential benefits seem compelling, Braddock (1999) notes that Shared
Decision Making is rarely achieved in practice and others report uncertainty over
how to actualise SDM in clinical care (Little et al., 2001). Hence, despite a palpable
cultural drift in support of SDM, a wealth of research is still being generated
indicating that patients frequently feel they are currently not receiving as much
information as they need, that they are significantly dissatisfied with health
encounters, and that most would welcome a more active role in the decision making
process than they are currently afforded (Leithner et al., 2006, p. 937).
Even with practitioner and patient receptiveness to SDM, significant challenges and
barriers exist. While most practitioners welcome change and see partnership with
patients as positive and productive, Fisher et al (2005, p.531) have noted a residual
reluctance to ‘let go’, claiming that shared decision making may be interpreted by
some as ‘disturbing and undermining’ (ibid). Additionally, clinicians who are
primarily trained to deal with the physical dimensions of care may be poorly
equipped in their training to communicate effectively with patients as required by
the SDM process. Within the predominant disease-centred model of training
experienced by health practitioners, emotional and psychological issues may become
relegated to a residual role (Zecca, Gradi, Nilsson, Bellotti, & al, 2006, p.129).
Consequently, some authors claim that practitioners may lack an awareness of the
emotional impact of illness on a person’s life (Bub, 2004; Fisher et al., 2005; Mead
et al., 2002; Say & Thomson, 2003). However, it is precisely an awareness of the
emotional and psychological dimensions of care in practitioners that patients value
when assessing what characteristics make a ‘good’ physician (Di Blasi, Harkness,
Ernst, Georgiou, & Kleijnen, 2001; Duberstein et al., 2007; Laidlaw et al., 2007).
Further factors inhibiting the realisation of SDM include the presumption that it will
inevitably take extra time which practitioners don’t have111F
112; that limited educational
materials are available to scaffold or support patient involvement; that some
physicians are simply more comfortable retaining the traditional paternalistic way of
112 Although this claim is refuted. See Braddock, 2002; Bub, 2004; Stewart, 1995 and Wear, 1998 .
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relating; that low levels of communication competency are widely apparent in
patients and practitioners; and, finally, as discussed earlier, that some practitioners
simply lack the technical knowledge, and thus confidence, to invite too open a
relationship with their patients. Patients too may be reluctant to share what they
believe to be their less authoritative knowledge in a relationship often characterised
by a perceived imbalance of power (Say & Thomson, 2003).
The apparent ‘reluctance’ to participate may be masking a lack of confidence rather
than an active renunciation of decision making. While some patients do genuinely
express less desire to be actively involved in decision making (Coulter, Entwistle,
& Gilbert, 1999; Edwards & Elwyn, 2001; McKinstry, 2000; Schneider, 1996),
being patient-centred is not about wilfully imposing an additional decisional
burden on patients who are unwilling or unable to accept the invitation. Rather,
shared decision-making in a framework of patient-centred care actually means
‘taking into account the patient’s desire for information and for sharing decisions
and for responding appropriately’ (Stewart, 2001a, p.445). Inevitably, establishing
this foundational insight into the evolving therapeutic partnership will begin with a
dialogue between patient and practitioner. As Connelly (2005) notes, it will begin
with a ‘mindfulness’, an openness to help the patient tell their story and a
commitment to value this unique story when it is told.
‘Physicians must be able to help the patient tell the story that is most
important, meaningful and descriptive of the situation. If the patients’
narrative is not heard fully, the possibility of diagnostic and therapeutic
error increases, the likelihood of personal connections resulting from a
shared experience diminishes, empathic opportunities are missed and
patients may not feel understood or cared for’ ( Connelly, 2005, p.84).
Hence, the adoption of patient-centred care and the realisation of SDM in practice
will require effective communication skills from all parties in an educational
encounter based on accurate and balanced information in a receptive institutional
environment. It is to these two considerations, communication and patient education,
that we will now turn our attention.
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Enhancing Patient /Provider Communication
As narratively constructed beings, the ability to communicate and convey our
personal stories, to speak, to listen to, and to be heard by each other, lies at the heart
of human ethical engagement in the medical arena as elsewhere. As an entry portal
into the unique moral perceptions, understandings, and experiences of another
human being, effective communication forms the bedrock of the ethical encounter.
Chapters Two and Three outlined the ethical importance of narrative, noting that the
sharing of experiences through dialogue can improve common understandings,
uncovering the rich complexities of individual lives, and better informing our ethical
judgements. Narrative and dialogue, or communication are, therefore, pivotal in
shaping the ethical agenda and there is a strong need to foster constructive
communication competencies in all individuals within open moral spaces within
institutions.
In spite of the acknowledged association between good communication and
enhanced health outcomes for patients, the research journals are full of examples
lamenting the consistently poor state of health care communication (Bub, 2004;
Cristofalo et al., 2006; Leithner et al., 2004), failures that often translate into
alienation, crisis, physical harm and potentially moral harm. Physicians are
recognised as having a potentially powerful influence on promoting patient
involvement and opening strong communication channels. Generally, however, it
appears that behaviours that optimize patient participation, such as promoting active
partnership building and the use of supportive talk, are under used by practitioners
in practice (Street, Gordon, Ward, Krupat, & Kravitz, 2005). Consequently, much
attention has been focussed on improving the communication skills or competencies
of physicians. Competent communication by practitioners includes the development
of active listening skills, and is further characterised by personal and professional
qualities of empathy, non-judgement and self reflection and the ability to identify
and address the emotional concerns of the patient (Barry, Bradley, Britten,
Stevenson, & Barber, 2000; Laidlaw et al., 2007; Post et al., 2002).
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Importantly however, communication is a dialogue, requiring input from both
parties. As the patient is the crucial ‘other half of the whole’ in the communication
dyad, some researchers are increasingly turning their gaze to the patient’s role in
shaping medical communication (Cegala, 2006; Cegala et al., 2004; Cegala &
Lenzmeier Broz, 2003; Cegala et al., 2007; Post et al., 2002; Street et al., 2005). The
reason for this shift in emphasis is not to excuse poor communication in
practitioners or to relinquish physician responsibility but to understand and support
the positive and potent effect that high patient participation is observed to have on
the overall quality of health communication and subsequent health outcomes. In
their review of sixteen randomised control trials assessing the impact of teaching
patients to communicate on health outcomes, Post et al (2002, p.344) concluded that
there was a direct link between patient communication training and improved health
related outcomes.
High participating patients engender a different communication dynamic with their
practitioners described by Cegala et al (2007, p.124) as follows,
‘When interacting with high participation patients, physicians volunteer
more information about treatment–related topics such as risks and benefits,
treatment options, side effects and descriptions of what treatments entail
than when interacting with low–participation patients’.
Additionally, the greater feelings of control and equalizing of the perceived power
imbalance by high participating patients also benefits physicians as effective patient
communicators are less likely to use indirect, or non-verbal ‘hints’, in conveying
their concerns (Cegala et al., 2007; Post et al., 2002; Street et al., 2005). Indeed,
high participating patients are more likely to directly disclose their ‘full selves’
(Barry et al , 2000, p,1250) thus facilitating the physician’s capacity to actively
listen (Post et al., 2002). Accordingly, the transformation of health care
communication depends upon several factors including the particular context, the
particular communication skills of the individuals involved, access to training
programs which develop communication competencies in patients and providers,
and an awareness of the ethical significance of effective communication.
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Communicating What? Promoting Accurate and Balanced Information
Underlying decisions regarding what information is to be communicated, by and to
whom, for what purpose, and to whose detriment or benefit, significantly prefigure
and shape the tone of any evolving conversation. With respect to prenatal testing, an
area of medical intervention heavily laden with socially, culturally, and technically
laden expectations and prejudices, the subject of what information is deemed
permissible is substantially pre-filtered through the existing biases inherent within
the normative pathway. However, patients cannot build informed reflective
understanding unless they are supported with appropriate, full, and balanced
information including a detailed description of any condition and the likely
outcomes with or without the proposed intervention. The need for even-handed,
accurate, and comprehensive information to support individuals faced with morally
confronting decisions is therefore essential (Irwig, McCaffery, Salkleld, & Bossuyt,
2006).
Commonly, however, research indicates that educational materials aimed at assisting
patients in giving informed consent frequently omit topics of relevance to patients,
overestimates the usefulness and benefits of intervention, and often contains
inaccurate, misleading, or incomplete information (Bramwell & Carter, 2001;
Burkell & Campbell, 2005; Coulter, 1998, 2002; Coulter et al., 1999; Lawson, 2006;
Williams et al., 2002d). While Coulter’s (1999) review was targeted specifically at
ten specific health conditions, which did not include prenatal screening, her
conclusion of a widespread failure to provide accurate and balance information of
relevance to patients was entrenched across many fields of medical care. She
concluded:
‘Current information materials for patients omit relevant data, fail to give a
balanced view of the effectiveness of different treatments and ignore
uncertainties……… the most common fault [of educational material] was to
give an overoptimistic view, emphasising the benefits and glossing over the
risks and side effects’ (ibid, p.318-9).
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While uncertainty is an inherent feature of clinical practice, and indeed of life,
because it may contribute to patient anxiety, regret, or dissatisfaction, physicians
may suppress or deny uncertainty in order to maintain patient confidence (Katz,
1984 cited by Gordon, Joos, & Byrne, 2000, p.60). Gordon et al (2000, p.63) further
note that, as medical education emphasises the importance of ‘unambiguous fact,
solvable problems and correct answers’, physicians may have a pre-existing
discomfort with uncertainty and their inability to control it. Indeed, Braddock et al
(1997, p.323) noted only 5% of consultations in their study explicitly mentioned
uncertainty. Uncertainty and risk are nonetheless defining features of prenatal
screening and honest disclosure of this inherent ambiguity must be foundational in
promoting the adequate understanding desired in recipients of screening. However,
Williams et al (2002d) found in their analysis of educational materials pertaining to
prenatal screening that,
‘the implicit certainty and precision frequently contained in leaflets and
statements of practitioners at our research sites illustrate how tentative
ambiguous concepts can be repackaged into authoritative medical
certainties’ (Williams et al., 2002d, p.236).
Stapleton et al (2002, p.641) likewise concluded that educational leaflets in
maternity care primarily promoted the perpetuation of existing normative pathways
which favoured technological intervention, noting that ‘the framing of information
in favour of particular options, ensured compliance with the “right” choice’. The
consequence of this encounter for women, Stapleton et al (2002, p.639) conclude,
was ‘informed compliance rather than informed consent’, an outcome that
disrespects patient agency and inhibits capacity to be a full participant in shared
medical decision making.
A further example of selective framing in the prenatal debate is the observed
obscuring of the link between screening and termination (Santhalahti, 1999;
Santhalahti et al., 1998; Suter, 2002,p.257-8). While it is the case that most couples
are never faced with termination as a consequence of screening, for the small
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percentage that do Suter (2002, p.258) asserts that ‘providers should be direct about
this option and its emotional costs’. The potential consequence of providing
incomplete, falsely ‘unambiguous’, or overly optimistic information, in Raffle’s
(2001) opinion is that ‘by giving information that only emphasises the positive
aspects of screening the autonomy of individuals is ignored’ (ibid, p.92). Raffle
(ibid, p.97) proposes that ‘it is inappropriate to continue to use information about
screening purely for encouraging high uptake’, particularly if high uptake is then to
be summonsed as evidence of ethical probity and lack of decisional conflict as some
researchers have suggested (Cuckle, 1995; Whynes, 2002).
The presumption that patients may be alarmed by too candid a picture or that they
should be sheltered from the unsettling truth is firmly rejected by Say & Thomson
(2003) and Coulter (1999) who found that rather than being troubled by the presence
of uncertainty or potentially bad news, participants expressed a definite preference
for information that is ‘balanced and indicates a careful and honest assessment of
the pro’s and cons of treatment’ (ibid, p.319). Similarly, the frank disclosure of
uncertainty is essential in promoting realistic expectations of care and of building
trust in the therapeutic relationship (Gordon et al., 2000; Say & Thomson, 2003).
Just as overly optimistic views about the benefits of screening may be painted, so,
too, an excessively pessimistic picture of the difficulties of disability may direct
choice towards a particular outcome. As previously discussed in Chapter Seven,
negative or misguided stereotypes about living with disability may inform parental
deliberation about the value of prenatal screening, while the normative pathway
tacitly entrenches a eugenic values position (Bridle, 2004; Lippman, 1991;
Shakespeare, 1998). Lawson (2006, p.56) further claims that the dominant negative
stereotypes of Down syndrome in particular are directly linked to the higher
numbers of selective terminations for this condition than for other conditions.
Abramsky, Hall, Levitan, & Marteau, (2001, p.466) likewise observed in their
recent study exploring the information given to parents after the diagnosis of a sex
chromosome abnormality that ‘ although there were some examples of excellent
counselling, there were other examples of grossly inadequate or frankly misleading
information being given’. Thus, any full and balanced disclosure of information
about potential outcomes of prenatal screening should ideally incorporate social
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education about the experience of disability (Parens & Asch, 2000). When given a
‘risk’ from ultrasound, nuchal or serum screening, women need balanced and
accurate information about what life with a disability is like (Shakespeare, 2001), as
Parens and Asch (2000, p.34) suggest,
‘As more and more disabilities can be detected prenatally, perhaps all that is
possible at this first, earliest juncture is for prospective parents to receive
accurate information about the purposes of screening and brief but balanced
information about the disabilities being tested for’.
This social information about life with a disability is as critical in interpreting the
meaning of testing as any genetic or clinical information (Shakespeare, 1999, p.31).
Thus, the purpose of communication and informing is not simply to ‘get’ informed
consent, but to empower the patient to make decisions consistent with their own
values framework and intentions for their own future (McMillan & Gillett, 2002).
Inevitably this will mean that some patients ultimately reject the medically preferred
option and physicians will increasingly need to learn to trust patients with such
decisions (Fisher et al., 2005).
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Supporting Patient Learning in the Clinical Environment
‘All one can ever do for a learner en route to he or she forming a view of his
or her own is to aid and abet him or her own voyage’ (Bruner, 2004, p.90).
Supporting patient learning in the clinical environment is an ethical imperative, thus
the remainder of this chapter will explore some practical steps that may be taken to
‘aid and abet’, and hopefully equip and empower, patients for active participation in
their own health care decisions. While the vast range of limitations to ensuring full
understanding discussed throughout this work may never be completely negated,
some basic and achievable improvements could be made in terms of patient
education beginning with the quality and relevance of health information.
The purpose of consumer health information should be to empower patients by
reinforcing and extending their knowledge and enhancing their understanding.
However, as flagged previously, it seems that much material falls significantly short
of this expectation (Bramwell & Carter, 2001; Burkell & Campbell, 2005; Coulter,
1998, 2002; Coulter et al., 1999; Lawson, 2006; Stapleton et al., 2002; Williams et
al., 2002d), thus more relevant and accessible educational materials are needed.
Research suggests that practitioners and patients value written health information
(McVea, Venugopal, Crabtree, & Aita, 2000), but the use of educational handouts
alone has enjoyed limited success (Braddock et al., 1999; Godolphin et al., 2001;
O'Cathain, Thomas, Walters, Nicholl, & Kirkham, 2002). Sole reliance on written
material without supporting discussion has been associated with poor educational
outcomes (Godolphin et al., 2001), while Braddock’s (1999) study on informed
consent which included the use of supplementary written material revealed that only
9% of patient - doctor interactions met the criteria for informed decision making.
Additionally, the efficacy of health information leaflets largely depends on the
knowledge of the physician distributing them, and is significantly determined by
how they are circulated (McVea et al., 2000). In practices with a large central
stockpile, leaflets were found to have limited effect, whereas, in practices where
individual practitioners maintained their own selected range, these were more likely
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to be distributed appropriately. Furthermore, patients were more likely to read
material specifically recommended by a doctor as the explicit attention drawn
increased the perceived legitimacy of the information (ibid).
A fundamental characteristic of any patient information ought to be that it is
‘readable’(Hochhauser, 2003), yet health education information is frequently written
at a level beyond the health literacy capacities of the general population (Coulter,
1998; Coulter et al., 1999; Hochhauser, 2003; Kendig, 2006). Often, the legal
orientation of written health material and the desire to protect against litigation or
authorise treatment, infects and corrupts the educational intention of genuinely
informing. Consequently, many health documents, particularly informed consent
forms, adopt an inaccessible legal parlance that may be alienating to patients, written
at a reading level that may exceed most patients’ health literacy capacity (Bottrell et
al., 2000; Hochhauser, 2003; Kendig, 2006). If written educational leaflets to
contribute to successful learning they must be readable and contain accurate and
balanced information. As patients are also known to respond more positively to
specific and tailored information, often disregarding generic information, the non-
specific nature of much educational health literature demands that they be
accompanied by a dialogue with a practitioner to provide necessary individualised
interpretation as generic messages may be disregarded as not relevant to particular
individuals (McVea et al., 2000).
In addition to purely written material, the use of visual representations in the form of
decision aids has been found to have a powerful impact on improving patient
understanding. Decision aids are described by Bekker, Hewison, & Thornton, (2003,
p.323) as ‘interventions that help individuals focus on a deliberative choice between
two or more treatment options’. Typically, a decision aid includes a visual
representation of the options, highlighting the risks, benefits, and likely
consequences and an invitation for an open discussion of each person’s individual
attitudes and values with respect to their decision112F
113. Commenting on a systematic
113 Examples include written texts, flow charts, pictorial representations, interactive computer programs with varying capacity to personalise the information given. The Ottawa Personal Decision Guide website provides numerous examples. http://decisionaid.ohri.ca/decguide.html. Accessed 7th August,2007.
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review of seventeen trials assessing the efficacy of decision aids, O’Connor et al
(1999, p731) concluded,
‘Decision aids improve knowledge, reduce decisional conflict, and stimulate
patients to be more active in decision making without increasing their
anxiety. Decision aids have little effect on satisfaction and a variable effect
on decisions.’
Thus, the use of decision aids, such as visual flow charts, or pictorial representations
of risk during clinical discussions, have been consistently found to improve
understanding, promote decision making and stimulate patient participation
(O'Connor et al., 1999). The underlying cognitive explanation for the observed
improvements, Bekker et al (2003) suggest, is that cognitive strategies are better
supported by decision aids primarily because they assist patients to think about
potential areas of conflict and seek meaningful, personalised feedback. Such
immediate, interactive, and responsive feedback is recognised by cognitive theorists
as essential in the educational cycle because misconceptions may be exposed and
crucial patient understandings may be immediately assessed and strengthened (Gage
& Berliner, 1991; Woods & Barrow, 1975). As patients are encouraged to articulate
and justify their reasoning in an immediate exchange with their practitioner, more
stable decisions are reached and misunderstandings can be more easily identified
and instantly remedied in an ongoing conversation. Consultations using decision
aids may take longer, but with immediate feedback, the degree of post choice
conflict was found to be lower and higher levels of understanding were reached
(O'Connor et al., 1999). As patient and practitioner ability to interpret the complex
probabilities that accompany prenatal screening is recognised as being problematic
(Edwards & Elwyn, 2001; Edwards, Elwyn, & Mulley, 2002; Edwards et al., 2003;
Ghosh, 2004), decision aids may be useful in providing different and
complementary visual learning strategies to support the critical understandings of
uncertainty that lie at the heart of screening technologies.
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Within this cohort of practitioners, each of the two genetic counsellors and the
clinical geneticist actively and successfully incorporated numerous positive learning
strategies into their sessions with patients, including the use of decision aids.
I think they need to have graphics or visual imagery as well as words and I think they need to think about it over a few days and they need to have their partner with them and they may need to hear it a couple of times….and they need to know what it means in terms of the general functioning of the baby and also discuss the dynamics of having a child with a disability in the family unit etc. We have tools like chromosome pictures, and so on and I don’t think a lot of other people would have those resources; I can explain the numbers and arrangements and so on. Genetic Counsellor 1
I often use a picture to show the fluid behind the neck, that will be measured, for results, I like to use graphs, people really connect quickly, but it’s different for everyone, so you have to keep trying until you find something that works for that individual, and it may be something different for the husband than for the wife, but I see that as my role in helping them interpret, what is essentially a foreign language, that’s how I see it. Genetic Counsellor 2 I see the time they spend with me as a one-to-one communication process, I guess I would routinely use pen and paper to draw things like autosomal dominant, autosomal recessive, pictures of chromosomes, not usually customised so it’s their chromosomes, but to give them an idea of what it is that we’re talking about when we say ‘chromosomes’. So, they would be commonly used in consultations, visual aids, but I guess explaining simple concepts like numerical chromosomal abnormalities or structural re-arrangements where pictures are very helpful. Clinical Geneticist
The clinical geneticist also adopted several effective teaching strategies, including
the ‘teach back’ (Kendig, 2006, p.330) in which patients are asked to ‘teach back’
to their health carer . He explains,
When they start asking questions or implications, that you can see that they understood the genetics of the thing – in the context of couples it often is couples that you see, one asks a question and the other one can answer it for them, so I can say, yes that’s right………… that’s the best way, when they start to generate hypotheses based on their own understandings of what this means, and what it could mean, then you know that they have understood it. Another……… way that you can check that is, if the spouse isn’t there, is to ask, what are you going to tell your spouse about what we said ……….so , they have to put it in their own words and that can be a very good feel, as to how articulate they are about understanding what has taken place. Usually, in more passive ways as well, because it is somewhat threatening to repeat ‘what the teacher just said’ so to speak………. it can be a bit of a challenge, but by saying does that make sense to you, or do you understand what I mean………..or, you look like you’ve understood this – is that correct? You can pick up on those are non-verbal cues as to whether they get it or not. [Do you ever experience patients who just don’t get it?]. Oh yes ……..yes… [Laughs] there are…….. Well, I think the most important thing is to say …….well, lots of people don’t get this …don’t feel bad that you don’t understand …… lots of people don’t really understand this…….. So they don’t need to know what Mendel worked out……Clinical Geneticist.
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Similarly one of the GP’s described the adoption of educationally insightful
practices: I’m also keen to make sure that for instance you only give them one or two little take home sound bites each visit…..it’s ….as much as practically possible……..it’s good to get their partner or support person in because, as you know, most patients remember about 25% of what you tell them. The first thing is you talk to them as clearly as you can, secondly get the partner in, so he can pick up the bits she misses, the third thing is you do is write them little notes, and draw diagrams, and I tend to hand write them, I don’t like the proforma things, because it tends to stick more in their brain, they know it’s just for them not every Jane Doe that walks through the door. Particularly for women who are up to speed on their IT, I encourage them to , if they come across something when they are web surfing to send me the (URL) address and I’ll have a look and say this is rubbish, or it’s good……General Practitioner 1
While some of the practitioners of this cohort displayed positive and sound
educational practice, in prenatal screening the majority of education and counselling,
if it happens at all, is undertaken by professionals who have limited knowledge of
genetics and consequently may have difficulty conveying the associated
uncertainties and risks (Qureshi et al., 2006; Sadler, 1997; Tyzack & Wallace,
2003). Indeed, of the mothers in the cohort who did not glean sufficient
understanding during consultation with their medical practitioners, many resorted to
the internet as an educational tool. Accessing information through the internet was a
strategy that most women seemed comfortable with, but which drew mixed response
from practitioners as the following comments illustrate.
The bulk of our support and education came from outside the medical profession, maybe it’s my nature to research whatever I don’t know, we just wanted to find out what we needed to know. The conversation with doctors / midwives was more just clarification. Elizabeth I got home I got on the internet and just typed it in and tried to find out as much as I could... I spoke to my mother who is a nurse………………………….they were the two main areas I went to. Danielle
There are those women on the other hand who will do internet searches and find everything under the sun and in fact scare themselves silly……..out of their wits with too much information. …if there is such a thing. Midwife 2 Often women who are well informed and well misinformed………..by a bit of web surfing……can be an interesting group of people to deal with because ultimately they may have read a load more than every other patient you deal with, you have to, once again, try and sort out what information they have received and put it in context. General Practitioner 1
There is considerable scope, therefore, to improve and support the development of
appropriate decision aids, based on accurate and balanced information which is
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responsive to patient and practitioner needs for use in routine daily clinical
encounters.
Chapter Summary
The ethical and educational transformation of practice ultimately depend jointly
upon the moral integrity and orientation of the institutions we construct in addition
to the values, capacities, and conduct of those individuals who function within them.
Transformation must therefore be supported at the individual and the institutional
levels simultaneously as, in reality, they are inextricably linked, each impacting
upon the other.
Institutionally, the philosophical orientation towards ethics must be re-humanised
and re-contextualised if it is to be relevant and responsive to the everyday, micro-
ethical, and immediate ethical dimensions of practice that practitioners and patients
desire. Institutionally, this may be supported through the ethics education of health
professionals, in addition to ensuring ongoing technical education within
institutionally legitimised and structured open, inclusive moral spaces. Policy reform
in response to the damaging production models of health care which place onerous
time and resource constraints on practitioners (and thus patients), also require further
consideration as does the role of legislation on undermining transparency in the
practice of termination within Queensland. Finally, institutionally entrenched
acceptance of the perfectibility doctrine of science and a mostly unquestioning belief
in technological progress as irrefutably good (although not transparently monitored),
remains an area of practice demanding further critique and consciousness raising.
Individually, patients may be supported to be full moral participants in their health
care decisions by adopting a patient-centred model of care which promotes the
realisation of genuinely shared decision making between patient and practitioner. As
authentically shared decision making is associated with reduced interventions,
reduced referrals, fewer malpractice suits, and improved health literacy and health
status of individuals, this mode of relating in the clinical encounter better supports
the ethical aims of achieving informed consent based on genuine reflective
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understanding. However, in order to achieve this, patients and practitioners may
need support in developing the necessary communication competencies. While
communication education may target at all stakeholders, patient communication
training has been found to be more effective, as ‘high participating’ patients
significantly influence and improve the quality and effectiveness of health care
dialogue. Much available health literature aimed at supporting patients omits topics
of relevance to patients, overestimates the usefulness and benefits of intervention,
and contains inaccurate, misleading, biased or incomplete information. Thus there is
a clear need to develop comprehensible, accurate and balanced literature, written in
language that is accessible and easily understood by the general population that
might complement patient understanding and invite the ethically essential
conversations between practitioner and patient to occur.
In a framework of patient-centred care with a commitment to shared decision
making, the ethical imperative of patient learning may be supported by strategies
such as the use of relevant decision aids which enable immediate feedback and allow
the patient to personalise the medical concepts by pursuing existing patient
knowledge to forge appropriate cognitive links; by actively eliciting patient
motivation which is a key predictor of learning; and by clarifying what knowledge
is morally, socially, and educationally important. In adopting these insights into how
practice may be transformed, the currently observed breakdown of informed consent
may be redressed.
The following and final chapter will recap the purpose of the research, summarise
the research findings, and consider the implications of this research for the direction
of future inquiry.
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CHAPTER 11
CONCLUSIONS
‘Everything will depend finally, not just on the possibility of choice, but what
is chosen’ (Kass, 2002, p.9).
This final chapter will recap the purpose of this research, review the findings in
relation to the questions posed at the outset, reinforce the significant contributions
made by this research, and highlight potential areas of ongoing research and
analysis.
Purpose of the Thesis
As outlined in Chapter One, this thesis had four broad aims. The first aim was to
clarify the nature and significance of respect for autonomy as exercised clinically
through the seeking of informed consent within biomedical practice.
The second aim was to examine the existing research emerging predominantly from
the United States, Canada, the United Kingdom and Europe which outlined
problematic issues associated with prenatal screening protocols that identified
barriers to achieving the ethically desired standards of informed consent in practice.
These barriers to ethical care included numerous philosophical, institutional, social
and personal constraints that undermined women’s capacity to give reflectively
considered and informed consent to the prenatal screening interventions on offer.
The third area of research sought to answer the question of whether similar problems
to those identified abroad were experienced by participants from a local cohort
within particular practice settings in Queensland. As limited research of this nature
has been undertaken locally, this research sought to explore the individual
experiences of a cohort of nineteen stakeholders comprising seven mothers, eleven
health practitioners and one disability support volunteer who were invited to share
their personal narratives outlining their experiences of prenatal screening. Their
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individual experiences were compared to and contrasted with accounts contained in
existing published literature with the following questions providing the focal points
of the research.
• Are the indicators of informed consent as voluntary, understood
and intentional participation as defined within the bioethics
literature met in practice?
• What individual and institutional constraints impinge upon a
person’s capacity to exercise autonomy and give ethically
reflective and informed consent in the clinical context?
• If informed consent is critically linked to gaining appropriate
levels of reflective understanding, what educational opportunities
are accessible to promote understanding prior to consenting in the
antenatal arena?
The fourth area of investigation examined the potential contribution of incorporating
the insights offered in educational philosophy and the principles of adult learning.
As becoming ‘informed’ to consent is primarily a mastery of understanding through
the process of learning, it was suggested that a practical educational framework may
provide a valuable contribution to addressing and potentially transforming the gaps
in current informed consent protocols. An approach grounded in educational
philosophy more appropriately regards learning as an embedded, relational process
rather than an event in which information is merely transferred from one place to
another.
The key findings arising from each of these four areas of research will be
summarised in light of what they reveal about the initial questions posed.
Contributions of this Research
The first aim was to clarify the nature and significance of respect for autonomy, as
exercised through ‘informed consent’ in the context of the routine clinical practice
of prenatal screening. Chapter Two considered the philosophical roots of the
elevation of autonomy and critiqued the emergence of overtly individualistic,
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detached, and rationalist views of the self present within dominant analytical modes
of ethical inquiry (Kass, 2002; Taylor, 1989; Toulmin, 1990; Walker, 1993, 1998). It
was proposed that the dominant, rationally considered and principled approach to
clinical ethics provided an inappropriate ontological foundation from which to
appreciatively understand the particular and multiple layers of embeddedness that
inform individual moral frameworks. It was further suggested that individual moral
frameworks are characterised not solely by rationally considered action as presumed
by the dominant modes, but by a plurality of often competing goods, of which
rationality is only one of many equal and other considerations. While this
ontological foundation is well established within the phenomenological
philosophical tradition, it is not widely reflected in the dominant institutional ethical
protocols which often adopt administratively or legally reductionist approaches to
the ethical. When this phenomenological orientation is adopted, the ethical
importance of narrative as a fundamental tool of social inquiry is further reinforced.
The experiences of the participants reinforced the need to realign medical practice
with a more resonant ontological foundation as basis for inclusive and
hermeneutically aware ethical deliberation. The narratives of the participants
substantially supported the view that individual moral deliberations and the making
of moral meaning begin, not with rationality and reason, but within the embedded
contexts of significant relationships, interpreted through a veil of personal histories,
cultures and beliefs. Once this phenomenological orientation was adopted, Chapter
Three outlined why a narrative mode of inquiry was the most ethically coherent
methodology to open a shared moral space of interlocution, providing an invitation
and entry portal into the unique world of individual moral decision making.
The second and third aims of the research involved comparison of the experiences of
the local cohort of mothers and practitioners with the experiences and insights
offered in existing published literature. These two aspects of the research will
therefore be considered together. Chapters Five, Six, Seven and Eight sought to
identify the potential barriers to achieving informed consent in practice. The primary
observation of this research confirmed that five and possibly six of the seven
mothers interviewed considered themselves ill-informed, and concluded that their
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participation in screening was the result of compliance with the institutionalised and
routine normative pathway. Practitioners, too, struggled with their realisation that
informed consent seemed so difficult to achieve within the multiple time and
resource constraints of institutionalised care. These observations significantly mirror
the experiences recounted in overseas research.
A distinctive feature of this research is the incorporation of the mothers’ experiences
and the practitioners’ experiences. Commonly adopted approaches to researching
ethical issues have often privileged professional perspectives, or, been concerned
with giving “voice” to an excluded group. The purpose of combining these
perspectives was not simply to describe local practice more thoroughly. Rather
consideration of these ‘competing’ discourses was an intentional attempt to move
beyond the often adversarial nature of ethical conversations in health care, to explore
how different perspectives can interact with each other in a meaningful way to better
inform and direct practical and informed transformation. As mentioned at the start of
this work, each participant came to this project in a spirit of trust and collaboration
with the honest intention of contributing to better understandings, to guide more
ethically responsive practices for the future. The inclusive stance adopted throughout
this work therefore challenges us to acknowledge that these so called distinct groups
are not so separate after all. Mothers are health carers, health carers are parents, and
all are bound by the social, cultural, and institutional structures in which they must
attend to their particular roles and responsibilities.
In addition to the philosophical constraints identified earlier, additional barriers to
supporting informed consent were considered in three areas of institutional, social
and personal constraints. Institutionally, participants identified the routine nature of
screening, communication barriers, overt and covert counselling, the minimalist
legal orientation of policy frameworks, and blurred accountability for informing as
significant factors that undermined the ethical. The issue of blurred accountability
may be specific to the Queensland context in which each woman may see several
practitioners in her pregnancy, and in which each practitioner may reasonably
presume another has undertaken the ethically required discussion of the purpose,
limitations, and potential outcomes of testing. However, the consequence of this
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blurred accountability for some mothers in this cohort was a complete lack of
opportunity to question and extend their understandings.
Social constraints identified by participants, and reflected in existing literature,
included the lack of acknowledgement of the socially constructed and largely
predetermined nature of choice which promotes those choices that are culturally
valued while less valued choices are often not explicitly articulated. Social
constraints also included trust in science and technology as automatically choice
enhancing and necessarily good, fear of blame, feelings of social responsibility to
prevent disability informed by poor understandings of disability, and the culturally
sanctioned economic justifications of cost benefit analysis.
Personal constraints that undermined women’s full participation in the decision
making process included their heightened need to be reassured. Paradoxically, the
feelings of reassurance gleaned were mostly accompanied by a lack of awareness of
the limitations of testing and an overstated belief in the minimal reassurance given.
Heightened risk awareness which is possibly brought on by the prospect of
screening itself, poor understandings of the mathematical concepts of probability
and chance, and a tendency to over personalise the generalised abstract population
based risk numbers, created further barriers to full ethical consideration. The final
personally constraining factor that promoted ill-informed compliance with routine
screening regimes was the perceived need to alleviate the anxiety and fear that the
prospect of screening had created.
The experiences of this cohort flag the following as areas of further research and
potential reform,
• Within this cohort of mothers, and practitioners, and within the existing
literature, routine screening is recognised as potentially obscuring the voluntary
nature of screening and thus inhibiting opportunities to explore and become
informed prior to intervention. Screening must therefore be clearly presented as
an option rather than a routine expectation.
• The ultimate link between prenatal testing and selective termination must be
more explicitly made at the start of the process. This may provide some women
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with the opportunity to assess whether the potential information that may be
revealed is ultimately of value to them.
• The limitations of screening, including the inability to provide definitive
answers, must be made more explicit to reduce false reassurance.
• The negative language of burden, risk, and defect that permeates the discourse of
screening may negatively impact on how such information is interpreted; more
considered language choice may promote open discussion.
• Pregnancy may be a time of vulnerability for some women and the real prospect
of psychological harm that can accompany prenatal screening must be seriously
considered as a negative aspect of the screening process. Ways to minimise the
observed psychological harms must be sought.
• The ethical nature of the prenatal intervention and its consequences must be
made more explicit. Selective termination on the basis of fetal abnormality raises
ethical questions that point beyond the immediate individual making the decision
to other significant, yet influential, social prejudices.
• The potential dangers of women receiving no opportunity for discussion and
education as a consequence of the blurred accountability for informing observed
between practitioners must be acknowledged and addressed.
A significant contribution made by this research is in the fourth and final area of
investigation which examined the potential contribution of incorporating an
educationally grounded response to the ethical failures observed. The incorporation
of well established principles of educational philosophy and adult learning into
clinical regimes was explored as a potential basis for positive ethical transformation
of clinical practice. This aspect of potential transformation, explored in Chapter
Nine, rejected the bioethical focus on information disclosure as educationally
superficial and thus ethically inadequate. The view of information as somehow
separate from the interpretive frameworks in which it is applied that is inherent
within the disclosure approach to ensuring informed consent was rejected in favour
of the embedded, relational, and interpretive framework for understanding the
cognitive processes.
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When considered from the multidisciplinary standpoint adopted, the shared
ontological basis of the phenomenological account of the ethical, the andragogical
framework of education, and the patient-centred model of medical care can provide
a coherent and complementary platform from which the ethical intentions of
informed consent can be practically supported. The same principles of learning and
adult education may be similarly applied to practitioner education in preparing them
for the ethically important role as patient educator as discussed in Chapter Ten.
An incidental contribution of this research was the extension of the Listening Guide
methodology with respect to articulating and understanding the ontological
importance and moral significance of contrapuntal voices. The ethical significance
of contrapuntal voices as opening a window on the plurality of goods that defines
individual moral frameworks has not been explicitly considered in published
references to the Listening Guide.
Directions for Future Research
The stories offered by participants locally in this cohort strongly mirrored the
observations reported in the research carried out abroad. However, the small sample
size and limited scope of this research suggest that further empirical research ought
be undertaken on a larger scale to establish the extent to which the challenges
identified in this cohort are apparent within institutional practices across Queensland
and even perhaps, given the lack of Australian research generally, across all
Australian states and territories.
Chapter Ten outlined several potential areas of further research to achieve the
required institutional and individual transformation that underpins practice reform.
From an educational perspective, the following areas of future research may be
pursued.
• The development of educational outreach programs to equip and support
practitioners in their ethical role as patient educators as outlined in Chapter
Ten.
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• The development and assessment of appropriate decision aids in conjunction
with patients’ focus groups to promote engaged, reflective understanding
prior to consenting.
• Assessment of whether increased levels of understanding and informedness
improves patient acceptance and preparedness for potentially unwelcome
results.
• Identification of the impact of blurred accountability for informing and its
consequences on women’s levels of understanding.
• The institutionally endorsed professional role for clinical ethicists is in its
infancy in Australia. The potential contribution to policy development and
educational opportunities for staff and patients that clinical ethicists make in
practice settings overseas, notably in Canada and the USA, flag this
institutional role as valuable one in providing appropriate support to work
through some of the organisational and educational issues identified in this
research. Thus, assessment of the potential organisational role for clinical
ethicists, to support those who must make these difficult moral decisions
requires further consideration in the local context.
Other aspects of screening practice that suggest further research included,
• Consideration of whether the increased time gap of 5-6 weeks between an
unfavourable nuchal translucency result and confirmation through
amniocentesis prolongs the psychological trauma of testing. The potential
long term effects of any anxiety and the development of support mechanisms
requires further exploration.
• The need to undertake adequate data collection and analysis was raised in
Chapter Ten as a means of promoting ‘institutional moral accountability’
(Solomon, 2005, p.43). Forms of data analysis could include
Comparison of outcomes between facilities
Retrospective comparison of predicted anomalies with actual
outcomes to confirm predictive accuracy
Confirmation of diagnosis from fetal autopsy where
appropriate.
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Summary
Recent history of antenatal care shows how quickly new technologies become
routinised and are embraced before their clinical or societal relevance is clear
(Markens et al., 1999). As this trend continues with the incorporation of genetic
testing, the predicted need to increasingly defer to biomedical authority (Press &
Browner, 1997) may further compromise patient autonomy and the capacity to reach
the ethical standard of ‘educated’ informed consent. It is, therefore, imperative to
respond to the insights offered by mothers and practitioners locally and to develop
procedures which can accommodate existing and emerging technologies without
eroding patient rights, practitioner obligations, or the ethical conduct of care.
When such deeply entrenched social, personal, and institutional constraints
discussed above are excluded from the ethical discourse of screening, the language
of autonomy and choice may seem ‘illusory and mocking’ for some (Bridle, 2004)
as the capacity to exercise autonomy is, in reality, compromised. Realistically, for
many the choice to undergo prenatal screening is the last in a long line of essentially
non-choices, socially entrenched and predetermined, to funnel parents down a
particular normative pathway, laid out long before they even conceived their child.
The powerful culmination of the law, the cultural imperialism of science and
technology, and the master narrative of individualism, merge to shape the political
landscape in which prenatal screening is practiced. While educational and
organisational reform may provide a more receptive environment in which all
stakeholder perspectives may be sought and valued, a fuller ethical response calls for
the reshaping of the political space by contesting these dominant discourses.
However, practical steps can be taken educationally to promote informed consent.
Basing patient education on existing patient knowledge, building of appropriate
cognitive links, ascertaining patient motivation which is a key predictor of learning,
and eliciting what knowledge is morally, socially, and educationally important to the
patient can promote the reflective understandings required of ethically informed
consent. It is the loss of these educational insights in the current transmissive modes
332
of education that has been a major factor in the breakdown of informed consent as
an ethical safeguard (Braddock, 2002).
Extending Charles Taylor’s (1989, p.92) claim that ‘the central notion here is that
articulation can bring us closer to the good as a moral source, can give it power’,
this work has sought not only to articulate, but to appreciate and understand the
multiple interweaving factors that shape the sociologically complex practice of
prenatal screening. Taylor (1989 cited by Abbey, 2000, pp.41-42) describes
articulation as ‘bringing into the light of awareness that which is unspoken but
presupposed’. Once the underlying moral values have been articulated, Taylor (ibid)
argues that the complexity of the moral life and the diverse range of goods to which
individual persons adhere can be better appreciated and attempts to simplify or
reduce moral understandings may be resisted. Furthermore, if respect for others,
based on the indisputable acceptance of their ‘inalienable preciousness’ (Gaita,
1999, p.4) is recognised as a source of moral good, and if the culturally sanctioned
means supporting this good is through respect for another’s autonomy safeguarded
by ensuring their opportunity to exercise their educated and understood informed
consent, then the numerous barriers to ethically robust and considered prenatal
interventions identified in this research, and elsewhere, require that they not only be
articulated, but also be transformed.
333
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APPENDIX I – Topic List
Experience with doctors Communication power /imbalances
Decision making about testing Amniocentesis
Lack of support or understanding MSAFP
Chorionic villus sampling Ultrasound Education
Time given to discussing options Ideas for a better experience
Choice to participate (optional?)
Attitude to disability Blood tests
Fear Voluntary testing Becoming informed
Re-assurance - if so of what? Does routine-ness obscure choice?
Anxiety Barriers of Language and Terminology Declining testing
Specific fears Experience with midwives
Attitude in general to reproductive technologies Ethical concerns
Medicalisation of pregnancy Next step after diagnosis.
Attitude to abortion Learning in a medical environment
Informed choice Trust in medical system/doctor (loyalty)
Trust in science Good or bad experience
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APPENDIX II A Participant Information Pack - Mothers Information Sheet Project Title Ethical Practice in Prenatal Screening – Facilitating Women’s’ Choices by Eleanor Milligan What is this research project about? The research project is about how women become informed about prenatal screening tests when they are accessing antenatal care. It will look at how women make decisions about whether or not to participate in screening, in addition to how health care professionals dispense educational material about the tests offered. Who can participate? I would like to interview women who have recently (within the past two years) been offered any sort of prenatal screening, who are no longer pregnant. I would like to hear your story of what tests you were offered, your reasons for accepting or declining these tests and your overall impressions of the experience. What is involved if I decide to participate? You will be invited to participate in an individual discussion, which will be held at a time and place suitable to you. This interview will be recorded and later transcribed for analysis. What type of questions will be asked? During the interview, you will be asked to recount your own experience and explain, in your own words, the reasons for your decisions. You will be able to talk about any experiences which you feel influenced the choices made. While the interview will be guided to cover certain topics, how much information you choose to share is completely up to you. You do not have to answer any direct question and can stop the interview at any time without explanation. You will be provided with a list of topics and words to help initiate conversation. You do not need to discuss any topic that you feel uncomfortable with. Will my details be confidential? Yes. Every effort will be made to maintain your confidentiality. None of your personal details will be made public and transcripts of your interview will be kept at a secure location which is not accessible to the general public. You will not be personally identified in any report as the source of specific comments.
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Will it benefit me to participate? There are no direct personal benefits, ie, you will not be paid to participate. You will be given the opportunity to discuss your experiences in a confidential, supportive and non-judgmental forum and will have the chance to express your views, both positive and negative, in a way which may benefit women facing these choices in the future. Are there any risks involved? Because some of the topics discussed revolve around personal choices relating to yourself and your family, you may feel uncomfortable recounting or justifying your personal actions or beliefs. However, you are not obliged to discuss any topic you feel uncomfortable with and can stop the interview at any time without justification. You can also withdraw from the project at any time without consequence. If as a result of this project you feel you need counselling support, this is available through Lifeline – 13 11 14 Parent Help Line – 1300 30 1300 Or with your own GP. What information will I be given about the project? If you desire, you will be given a transcript of your interview and will be provided with regular feedback on the progress of the study. At the end of the study, you will be given a report summarising the findings. I would also encourage you to contact me at any time to ask any question about your involvement in this project. Concerns or Complaints? If you have any concerns or complaints about the ethical conduct of this project, you can contact the Research Ethics Officer on 3864 2340. Alternatively, an e-mail can be sent to [email protected] , or a letter to Research Ethics Officer Office of Research O Block Podium QUT GPO Box 2434 Brisbane. 4001.
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I will contact you within one week of sending this information sheet. If you DO wish to be involved, when I call you, we can discuss any further questions you may have and arrange a suitable time and place to conduct the interview. At our interview I will ask you to sign a consent form like the one supplied with this information pack which states that you understand the purpose of this research and are aware of your right to withdraw at any time. If you DO NOT wish to be involved in this project, when I call you, simply tell me you do not wish to continue. Alternatively you can send me an e-mail ( [email protected]) or leave a telephone message. There is no consequence for deciding not to continue. Thank you for taking the time to consider being involved in this project. Kind regards Eleanor Milligan Ph- 0409 550 671 e-mail- [email protected]
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Ethical Practice in Prenatal Screening- Facilitating Women’s Choices. Eleanor Milligan [email protected] ph-3864 4577 mob. 0419 027 126. Yes, I would like to participate in the research project. I agree to participate by taking part in a recorded interview with Eleanor Milligan. I understand that this project is part of a Doctoral thesis being conducted by Eleanor in the School of Humanities and Human Services at the Queensland University of Technology, Carseldine. By signing below, I am indicating that I understand
• The nature and purpose of the project as explained by Eleanor and outlined in the information package previously received.
• That my name and contact details are strictly confidential and my privacy and anonymity will be preserved.
• That I may refuse to discuss any issue at any time. • That I may stop the interview at any time without reason. • That I will have access to my interview transcript if desired. • That I can request information on the progress of this project at any
time • That I will be provided with a summary of the research findings at
the conclusion of this project. • That any concerns about the conduct of this research can be directed
to the Research Ethics Officer on 3864 2340 or [email protected]
NAME: ________________________________________________ SIGNATURE: ________________________________________________ DATE: ________________________________________________
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APPENDIX II B Participant Information Pack - Practitioners Information Sheet Project Title Ethical Practice in Prenatal Screening – Facilitating Women’s’ Choices By Eleanor Milligan What is this research project about? The research project is about how women become informed about prenatal screening tests when they are accessing antenatal care. It will look at how women make decisions about whether or not to participate in screening, in addition to how health care professionals dispense educational material about the tests offered. Who can participate? I would like to interview health care workers involved in antenatal care. I will ask you to recount, in your own words, your overall impressions and experiences of the current practice. What is involved if I decide to participate? You will be invited to participate in an individual interview, which will be held at a time and place suitable to you. The interview will be recorded and later transcribed for analysis. What type of questions will be asked? During the interview, you will be asked to recount your own experience and explain, in your own words, your impressions and ideas. You will be able to talk about any experiences which you feel influenced the opinions you hold. You will be provided with a list of topics and words to help initiate conversation and are not expected to discuss any topic that you feel uncomfortable with. How much information you choose to share is completely up to you. You do not have to answer any direct question and can stop the interview at any time without explanation. All interview transcripts are completely confidential and your privacy will be preserved.
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Will my details be confidential? Yes. Every effort will be made to maintain your confidentiality. None of your personal details will be made public and transcripts of your interview will be kept at a secure location which is not accessible to the general public. You will not be personally identified in any report as the source of specific comments. Will it benefit me to participate? There are no direct personal benefits, i.e., you will not be paid to participate. You will be given the opportunity to discuss your experiences in a confidential, supportive and non-judgmental forum and will have the chance to express your views, both positive and negative, in a way which may benefit both women and health care professionals in dealing with these issues in the future. Are there any risks involved? Because some of the topics discussed are concerned with your personal views, you may feel distressed by recounting or justifying your personal actions or beliefs. However, you are not obliged to discuss any topic you feel uncomfortable with and can stop the interview at any time without justification. You can also withdraw from the project at any time without consequence. If as a result of this project you feel you need counselling support, this is available through Lifeline on 13 11 14, Parent Help Line on 1300 30 1300, or with your own GP. What information will I be given about the project? If you desire, you will be given a transcript of your interview and will be provided with regular feedback on the progress of the study. At the end of the study, you will be given a report summarising the findings. I would also encourage you to contact me at any time to ask any question about your involvement in this project. Concerns or Complaints? If you have any concerns or complaints about the ethical conduct of this project, you can contact the Research Ethics Officer on 3864 2340. Alternatively, an e-mail can be sent to [email protected] , or a letter to Research Ethics Officer Office of Research O Block Podium QUT GPO Box 2434 Brisbane. 4001.
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APPENDIX III Ethics Approval UHREC 3911H 18th April 2005 Dear Eleanor, I write further to the response provided in relation to ethical clearance for your project, "Ethical Practice in Prenatal Screening-Facilitating Women’s' choices" (QUT Ref No 3911H). On behalf of the Chair, University Human Research Ethics Committee, I wish to advise that this response has addressed the information required by the Expedited Ethical Review Panel. Consequently, you are authorised to immediately commence your project on this basis. The decision is subject to ratification at the 14 June 2005 meeting of UHREC. I will only contact you again in relation to this matter if the Committee raises any additional questions or concerns in regard to the clearance. The University requires its researchers to comply with:
• the University’s 9Hresearch ethics arrangements and the 10HQUT11H Code of Conduct for Research;
• the standard conditions of ethical clearance; • any additional conditions prescribed by the UHREC; • any relevant State / Territory or Commonwealth legislation; • the policies and guidelines issued by the NHMRC and AVCC (including the
National Statement on Ethical Conduct in Research Involving Humans).
Please do not hesitate to contact me further if you have any queries regarding this matter. Regards Wendy
Wendy Heffernan Research Ethics Officer Office of Research O Block Podium Gardens Point Campus Tel: 07 3864 2340 Fax: 07 3864 1304
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APPENDIX IV
Topic List Key Informed consent Constraints on
Choice
Education Transformative Contrapuntal voices
Informed choice
Declining testing
Voluntary testing
Next step after
diagnosis
Ethical concerns
Becoming informed
Does routine-ness
obscure choice?
Time given to
discussing options
Choice to participate
(optional?)
Communication
power /imbalances
Decision making
about testing
Attitude to abortion
Specific fears
Time given to
discussing
options
Medicalisation
of pregnancy
Trust in science
Trust in medical
system/doctor
(loyalty)
Barriers of
Language and
Terminology
Re-assurance -
if so of what?
Communication
power
/imbalances
Attitude to
abortion
Medicalisation
of pregnancy
Attitude to
disability
Next step after
diagnosis
Fear
Anxiety
Risk
Learning in a
medical
environment
Time given to
discussing
options
Educational
opportunities
Communication
power
/imbalances
Barriers of
Language and
Terminology
Attitude to
abortion
Support or
understanding
Becoming
informed – who
educates?
Ideas for a better experience Good or bad
experience
Experience with
doctors/patients
Communication
power
/imbalances
Certainty /Clarity
(Professional and
personal)
Self doubt
Awakened
Capitulation
Reproach
Self interest/control
Resistance
Self preservation
Condescension
Care
Professional
defensiveness
Detachment
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