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  • 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

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    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)

    http://images.google.com.au/imgres?imgurl=http://www.millikin.edu/multicultural/Newsletter/DRUM_f7.gif&imgrefurl=http://www.millikin.edu/multicultural/newsletter/DRUM_february_2003.htm&h=187&w=169&sz=4&tbnid=DXVMXWUahf6izM:&tbnh=97&tbnw=87&hl=en&start=23&prev=/images%3Fq%3Draise%2Ba%2Bchild%26start%3D20%26svnum%3D10%26hl%3Den%26lr%3D%26sa%3DN

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    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

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    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.

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    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

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    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

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    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

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    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

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    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

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    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

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    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,

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    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 illustrating1F2 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 screening2F3, many

    could not articulate the purpose or implications of the procedures ‘consented’ to3F4,

    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

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    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.

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    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

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    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

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    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.

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    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 technologies4F5 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 5F6 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 6F7. 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 compliance7F8 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 8F9 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 previously9F10 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 principles10F11 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?’ 11F12. While

    this notion of ethics appears to have permeated collective understandings12F13 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