BIOETHICS CARIBE BSEC’s NEWSLETTER

Secretariat: St George’s University (SGU) Grenada. www.bioethicscaribe.org

Newsletter of the Bioethics Society of the English-Speaking Caribbean - September 2019

Table of Contents

FROM THE DESK OF THE PRESIDENT ....................................................................................... 3

FROM THE DESK OF THE EDITOR .............................................................................................. 3

MEMBERS’ ARTICLES ...................................................................................................................... 4

Individual Responsibility for Health - Derrick Aarons ................................................................... 4

Artificial Reproductive Technologies Changing the Concept of Parenthood - Derrick

Aarons ............................................................................................................................................................. 10

The Human Person Considered: Some Observations on the Nature of Bioethics in

Hinduism - Athene Aberdeen ................................................................................................................ 18

Refusing to Vaccinate – Is it Ethical in this Modern Era? – Hariharan Seetharaman .... 22

Protecting Human Subjects – The Role of the National Research Ethics Committee in St.

Vincent and the Grenadines - Shakel Henson ................................................................................ 24

The Influence of Interest Groups on the Policy-making Process for Health Research

Systems - Shakel Henson ........................................................................................................................ 28

BSEC MEMBERS’ ACCOMPLISHMENTS: ................................................................................. 32

Dr. Derrick Aarons ..................................................................................................................................... 32

Grace Sirju-Charran ................................................................................................................................... 34

Cheryl Macpherson .................................................................................................................................... 35

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Dr Shakel Henson ....................................................................................................................................... 36

Dr. Seetharaman Hariharan ................................................................................................................... 36

Ms. Shereen Dawkins: ............................................................................................................................... 36

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FROM THE DESK OF THE PRESIDENT

Dear BSEC Members,

It gives me immense pleasure to write this message during the release of our BSEC’s Newsletter for

2019.

We have tried to put together some important current issues in Bioethics for your reading and feedback.

Please feel free to record your comments on the website.

I wish to express my sincere gratitude to the contributors, Dr Grace Sirju-Charran for her review and

editing and our most efficient secretary Ms Kamille Williams for putting it all together.

Thanks to all of you for your continued support for BSEC.

Best Regards,

Professor Hariharan Seetharaman

President, Bioethics Society of the English-Speaking Caribbean

FROM THE DESK OF THE EDITOR

In this issue, all articles have a focus on health. The contribution by Athene Aberdeen gives us alternative

insights in the ethical analysis of abortion and euthanasia based on Hinduism which conceptualizes the

human person as a unity of body with mind/soul. ; Hariharan Seetharaman addresses the critical role

of vaccinations and ethical analysis of the ‘anti-vaxxars’ position; Shekel Henson highlights important

recommendations for Research Ethics Committees working in Low and Middle Income Countries

relevant for Health research while a second article analyses the influence of interest groups on health

policy and Derrick Aarons has given us a brilliant overview of two topics currently under consideration

by the International Bioethics committee (IBC). He clearly lays out the ethical principles as well as the

recommendations suggested for Assisted Reproductive Technologies (ART) and Individual

Responsibility for Health.

I hope you find these articles of interest with new insights into the ethics of Healthcare.

Grace Sirju-Charran

Editor and Vice-President

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MEMBERS’ ARTICLES

Individual Responsibility for Health - Derrick Aarons

Member - The International Bioethics Committee of UNESCO

Introduction:

This very important topic was chosen by the International Bioethics Committee (IBC) of the United

Nations Educational, Scientific and Cultural Organization (UNESCO) as one of the foci of its work

during the period 2017-2019. The IBC comprises 36 independent experts appointed by UNESCO to

discuss, deliberate, and develop recommendations on specific issues of global concern for distribution

to nation states around the world.

In deliberating on the principle of individual responsibility as it relates to health, the IBC examined

some key concepts such as the notion of responsibility, freedom and liberty, and the principles of

autonomy, solidarity and justice. Deliberations continued on the individual’s right to health, the

individual’s responsibility within that right, and how member states around the world could provide

support in that respect. Such support could come through various health promotion measures, including

information and education, taxation measures, behavioural 'nudging', as well as other more coercive

measures.

The IBC also noted that marketing strategies by pharmaceutical companies may have a negative

influence on an individual’s health, as could health professionals and their professional societies. It was

noted however that social and personal limitations exist, and therefore an individual’s responsibility for

health should be viewed in a prospective way.

The IBC then made specific recommendations aimed at the individual, the State, and at international

institutions and stakeholders. Its comprehensive report will be submitted to the headquarters of

UNESCO by the last quarter of 2019, for appropriate distribution to all member states and stakeholders

around the world.

What follows herein is a summary of some of the important points that were contemplated in the process.

This summary does not cover all the points discussed nor all the recommendations made, therefore

interested parties should seek to read the full contents of the report when it is distributed by UNESCO.

KEY CONCEPTS

Responsibility:

This concept is inter-relational and is linked to principles such as autonomy and freedom. The capacity

for self-determination and making choices will either be in the person’s best interests or to one’s

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detriment. The concept also includes the principle of duty - what one should and should not do. It also

includes the notion of causal responsibility, where every action taken has cause and effects.

Responsibility also involves dealing with the consequences of actions: it demands that each person

should pass judgement on his or her own actions, whether in relation to one’s health or other aspects of

one’s existence. In this dispensation, virtue is also important, as a virtuous person is one who will pay

attention to the consequences of his or her actions on others.

Adjunct to this is the concept of legal responsibility, in that the law may promote the rule of

compensation for any damage suffered by others as a result of one’s actions (civil liability and restorative

justice).

Visions for interactions among members of societies may vary across cultures and religious traditions,

but most teach the recommendation to be ‘your brother’s keeper or guardian.’

Freedom & Liberty:

Moral responsibility and freedom should help to guide human action. This is particularly important in

the matter of health, as persons may be perceived to be free to smoke, to take or refuse vaccinations, or

to exercise to reduce obesity. However, a person is free only if they have the opportunity to choose

between alternative possibilities, therefore freedom is not absolute but is limited by the need to secure

and respect the rights and freedoms of others. Hence freedom is a relationship with others whereby a

person must consider the possible consequences of each free choice, both for themselves and for others.

Conflicts in exercising freedom arise when a person makes a decision according to their own values,

which may be at variance with norms that have been established by an external authority in order to

protect the common good. Further, strong market forces may operate coercively in guiding persons

towards using new technologies without adequate assessment of whether there are any real health

benefits for the individual, or the cost to society, thus presenting a challenge to individual freedom.

Autonomy:

Autonomy is closely related to responsibility, and accords respect for free will. It is founded on an

individualistic paradigm, on the assumption of equality between all human beings. Individual

responsibility rests on the values chosen by the individual that could lead both to the limitation of

freedom to allow the expression of other people’s values, as well as the person being responsible only

for themselves.

Autonomy also connotes the notion of individual decision-making which is allied to the notion of choice.

So, in the matter of health, the individual may choose whether to be active and be involved in sport, or

whether to lead a sedentary lifestyle.

The concept of relational autonomy addresses the dimension of inter-dependent relations that mould an

individual and their actions. In this dispensation, autonomy is the result of an inter-subjective process

and an acknowledgement of self and others.

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Solidarity and Justice:

Solidarity is often associated with the “common good” i.e. motivation of individuals to serve either a

group or societal interests. This concept has the notion that individual interests are also realized when

they are placed at the service of the common good. So, within the health care context, the

implementation and maintenance of national health services have traditionally been based on the concept

of an economic solidarity, where workers through paying premiums and citizens through paying taxes

agree to a restriction of their liberty and property right in order to support a system for many if not all

individuals within the community.

Solidarity may be in conflict with individual responsibility in those countries where individual

responsibility to stay healthy along with the judicious use of health-care services is strongly emphasized

due to rising health care costs. Such a conflict calls for an appeal to justice as a general principle, in

order to guide our individual and collective behaviour in the allocation of scarce resources.

The latter point may be exemplified by the issue of vaccination. Vaccines help to protect us against

specific diseases, and our collective health within communities benefit when all persons therein are

vaccinated against illnesses like measles or polio. It therefore behooves parents to ensure that their

children are properly vaccinated, which concomitantly reduces the use of health-care services through

disease prevention.

Cases of chronic lifestyle-related diseases should not be attributed exclusively to an individual’s failure

to behave in a health-promoting way, since lifestyle is just one element that interplays with other

important influences, such as socio-economic, environmental, and genetic factors. Accordingly, the

benefits and risks to the individual and to society in promoting healthy lifestyles must always be

considered, since the interplay of factors is always very complex.

INDIVIDUAL RESPONSIBILITY

Health has substantial value: being free from disease or infirmity enables a person to pursue a standard

of living in keeping with human dignity. Accordingly, the right to health is universally recognized as a

fundamental human right in nearly all human rights instruments. We should note however that the right

to health is not a right to be healthy. A State cannot guarantee its citizens’ good health as the latter is

influenced by several factors that are outside the control of the State.

This notwithstanding, the right to health does not ignore the need for individuals to take personal

responsibility for their health. That responsibility involves actively taking steps to uphold one’s own

health, such as exercising frequently, maintaining a healthy diet, and taking the initiative to undertake

health screenings regularly. Individual responsibility to be healthy may be synonymous with a duty to

be healthy, wherein there is the personal responsibility to take care of oneself in order to avoid the risk

factors of illnesses which can, in many instances, involve the modification of individual behaviours (e.g.

risks for HIV/AIDS).

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The Role of the State:

The State’s obligation to the right of health is to provide access to the highest attainable standard of

health possible. States should ensure that adequate medical care is made accessible to their populations,

and individuals have a personal responsibility to take care of their own health as well.

States might consider enacting health care policies that aim to encourage individuals to take personal

responsibility for their own health. Such policies could come in the form of health promotion campaigns

that aim to educate the public and increase their health care literacy so that they are able to make healthier

lifestyle decisions in their daily lives. Alternatively, States could develop persuasive measures or

policies such as offering financial incentives for making healthier choices, or even mandating that

individuals take financial responsibility for their health care costs brought about by diseases that were

preventable or by their risky behaviours.

It is also the responsibility of States to ensure good public health, and help people, especially those with

low income, to maintain their health and to have access to comprehensive health care. Governments are

responsible for the complete oversight of their state’s health care systems, and so are obliged to provide

conditions for all persons living within their jurisdictions to attain good health. They should be the

prime mover to address health care inequalities within their state protecting the disadvantaged

populations therein.

These measures should not deny individuals health care or financial aid, but as an indirect means of

spurring individuals to take greater responsibility for maintaining their own health. Health is both a

public and personal concern, and so the responsibility of actors outside of the state and of individuals

remain a vital principle needed for the betterment of humanity.

It is unethical to deny an individual treatment in health care or abandon them to their own devices if

they are unable to afford the health care they need, under the pretext of respecting their autonomy.

Health inequities exist as a result of an individual’s socio-economic conditions, the political situation,

environmental conditions, and even genetic predispositions. Promoting individual responsibility for

health does not mean permitting such health care inequities to be perpetuated.

Further, victim-blaming in the promotion of health only reinforces stigmatization against those who are

ill, disabled, or hapless. It causes unnecessary mental distress, and demoralizes individuals into feeling

despondent about their situations, harbour feelings or self-blame, and perhaps shun seeking treatment

for fear of social stigmatization. They certainly would not be inspired to take charge of their own health.

Health promotion should therefore aim at encouraging and empowering individuals to take active

control of their health and avoid unduly assigning them blame for falling ill. Further, public health

policies should not discriminate against individuals who of their own volition choose to partake in

unhealthy lifestyle behaviours. Articles of human rights require that individuals have a right to be

respected for the decisions they make.

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Some effects of drug marketing strategies and other stakeholders:

We should also be cognizant that the marketing strategies of the pharmaceutical industry can be

sometimes detrimental to the health of individuals and the sustainability of health systems by promoting

the use of unnecessary products. By aggressively targeting healthy persons, they aim to create new

markets through transforming natural processes into medical conditions to be treated with drugs.

Similarly, doctors and their specialty organizations may be involved through the re-defining of lower

levels for cholesterol, blood pressure, glycaemia, triglycerides, and vitamin D, which increases

unnecessary drug use while affecting the individual’s perception of risk to their health.

The medical equipment industry may also be involved, since with technological progress (e.g. fertility

treatments), they push for the use of new diagnostic imaging examinations, sometimes with the

connivance of doctors, in conditions where clinical or simpler exams would be sufficient. This may

give the patient a false sense of security while increasing health care costs exponentially, adding even

more pressure to the already scarce funding for health care.

These all impede individual autonomy and dilute responsibility for health, as they increase human

vulnerability through a lack of access to adequate information.

Social and personal limitations:

Exposure to risk factors and the likelihood of risk-taking behaviours are unequally distributed across

society, with a heavier burden falling on the poorer segments of society. The so-called healthy lifestyles

are sometimes simply unaffordable, or access to knowledge or the basic goods needed to achieve good

health may be very limited. There are also different expectations of life expectancy; the satisfaction of

life goals; or of what is prestigious or suitable as an individual’s role in a society.

Consequently, one could argue that it would not be fair to add to the burden of persons subject to poorer

living conditions by requiring them to follow the same rules as those whose daily needs have already

been met. Personal responsibility in inequitable situations calls for those who are healthier and able to

lead healthier lifestyles to strive for a fairer distribution of opportunities, goods and services within their

societies, whether through taxation or universal health insurance schemes.

We should also note that unhealthy behaviour cannot be completely attributed to conscious decisions,

as there may have been peer pressure to start smoking; someone may come from a disadvantaged group

where fast food was the normal diet; or someone may not have had the chance to exercise because they

had to hold two jobs in order to earn enough money for living. Further, causality is a complex issue and

so the causal link between health and unhealthy behaviour becomes unclear due to the challenge in

determining which proportion of the problem is actually caused by the unhealthy behaviour.

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So individual responsibility for health should be used in a prospective way, where persons are called

upon and encouraged to behave moderately and wisely. It should not be used in a retrospective way,

punishing the person for their behaviour (on top of their state of ill health).

SOME RECOMMENDATIONS

For the Individual:

1. Every person should strive to understand their values, and look for reliable sources of information

on health and technological developments that might impact their health

2. Every person should, according to their own values and possibilities, take care of their own health

in as much as their health (or disease) may pose a risk to other members of society

3. Every person should contribute, according to their possibilities, to the implementation and

maintenance of universal, comprehensive and equitable health care systems, including the

judicious use of health care services and striving not to add an additional burden by incurring

unnecessary health risks.

For the State:

1. States should strive to continue developing and maintaining universal, comprehensive, and

equitable health care systems

2. States should not use economic or other sanctions as a means to promote healthy lifestyles, but

should take appropriate measures to decrease the socio-economic limitations affecting the

individual’s capacity to make meaningful choices and assume real responsibility

3. States should not implement public health measures on individuals without solid scientific bases

4. States should promote education and critical awareness in science and technology, so that

persons may better understand the benefits as well as limitations of available technologies, and

the possible benefits, risks, and limitations of their choices on their own health and that of others.

For International Institutions and Stakeholders:

1. All should promote a culture of public health which complements curative health care

2. All should contribute to increase open access to good quality health care technologies and

associated relevant information

3. All are encouraged to conduct cross-cultural research on health-seeking behaviours.

Readers who wish to read more on this issue or evaluate the full report of the IBC on this subject are

invited to read the final report when it is released by UNESCO at the end of 2019. All Reports and

Declarations of UNESCO can be accessed at the UNESCO website.

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Artificial Reproductive Technologies Changing the Concept of Parenthood -

Derrick Aarons Member - The International Bioethics Committee of UNESCO

Introduction

Approximately every 2 years, the International Bioethics Committee (IBC) of UNESCO identifies two

important and very challenging societal issues which is examined deeply in order to develop bioethical

recommendations which would assist governments of member states in establishing relevant policies

within their countries.

In its work programme for 2017-2019, the IBC addressed the issue of assisted reproductive technologies

(ART) and their effects on the traditional concept of parenthood as one of its work topics. The IBC also

examined the impact of ART on the historic societal concepts of parenthood, the social and

psychological aspects involved, and reflected on some of the ethical and legal issues, e.g. the recognition

of parenthood, the 'right to procreation', the differences between wishes, freedoms, and rights, and the

best interests of the child.

This article provides a summary of that work.

Below are some of the important points made during the deliberations on the subject.

TECHNOLOGICAL AND SCIENTIFIC DEVELOPMENTS

Causes of infertility:

In introducing the concept of infertility to all possible readers across the globe, the IBC used the WHO

definition of infertility, which is a disease of the reproductive system in which there is failure to achieve

a pregnancy after 12 or more months of regular unprotected sexual intercourse. It affects both women

and men. Causes for women include intrinsic factors such as infections, endometriosis, and polycystic

ovarian syndrome. Extrinsic factors include chemotherapy, radiotherapy, and certain medications.

Causes for men include disruption in testicular or ejaculatory function, hormonal factors, and genetic

disorders. Chemotherapy, radiotherapy, surgical removal of the testes, medical conditions such as

diabetes mellitus, autoimmune disorders, anabolic steroid use, and smoking are also among the factors

that may cause infertility in men.

ART are now being used to overcome some causes of male and female infertility.

Assisted Reproductive Technologies (ART):

Assisted Reproductive Technologies have been evolving at great speed and are currently being used not

only by infertile heterosexual couples, but in some countries, by single persons and same sex couples.

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ART may be classified into three groups: i) assisted (e.g. in-vitro fertilization, artificial uterus, and

gamete freezing); ii) co-operative (e.g. surrogacy, gamete and mitochondrial donations); and iii)

selective (e.g. pre-implantation genetic diagnosis and pre-implantation sex selection).

All these technologies require sperm obtained from the man, and most require hormonal stimulation to

retrieve the eggs from the woman. The most common complication of ART is multiple pregnancies.

However, the number of embryos transferred in the process and the rate of multiple births produced

differ among IVF clinics and countries.

Gamete and embryo donation:

Donated eggs, sperms or embryos may be the only solution to remedy the lack of functional female or

male gametes, thereby enabling the couple to have a child genetically linked to them. Gamete and

embryo donation may affect parenthood through:

a. the egg from the biological mother being fertilized by the sperm from a donor;

b. the egg that comes from the donor being fertilized by the sperm of the biological father;

c. both egg and sperm coming from donors;

d. embryo donation.

In both c and d there is no genetic link between the resulting offspring and its social or legal parents.

Storage of gametes and embryos:

The development of ultra-rapid freezing techniques (vitrification) has provided the opportunity of

storing unfertilized eggs for later use. The storage of eggs or tissues from the ovary may help to preserve

or restore fertility in women who have not yet found a partner up to that point. Vitrification of eggs,

sperms, and embryos and then the subsequent use of ART has opened the possibility for late onset

parenthood for both men and women.

Mitochondrial donation:

Mitochondria are tiny cellular structures present in every cell of the body (except red blood cells) and

are responsible for creating greater than 90% of the energy needed to sustain life and organ function.

Mitochondrial disorders can be inherited or caused by mutations in genes, and there is no cure for these

conditions. Consequently, this can result in the death of babies, children, and young people.

The donation of mitochondria can prevent the transmission of maternally inherited mitochondrial

disorders but require the use of ART and donated eggs. The resulting child will have genetic material

from three individuals: nuclear genetic material from the two parents and the healthy mitochondria from

the donated egg. While mitochondrial donation is not a treatment itself for infertility, it however requires

the use of ART techniques to prevent transmission of a debilitating genetic disorder.

Uterus transplantation:Infertility due to the absence of or the non-functioning of the uterus which

affects thousands of women worldwide. Live-donor uterus transplantations have been done in certain

countries since 2013, and uterus transplantation from a deceased donor has begun since 2018. Uterus

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transplantation can be considered as an alternative to surrogacy procedures, since it maintains a

gestational link between the social mother and the child.

Artificial uterus:

In 2017, premature lambs kept alive in a so-called artificial uterus (‘biobag’) displayed normal body

growth and lung maturation. Consequently, it is anticipated that the technology will be safe to use in

humans at some point, and the targeted population would most likely be extremely premature infants of

around 23 - 25 weeks of gestation.

Artificial gametes:

Scientists are currently exploring several pathways to create gametes in-vitro, and plausible biological

routes towards the production of artificial sperms and artificial eggs have been described. It may also

be possible to find biological routes for the development of ‘sperms’ in females and ‘eggs’ in males,

using knowledge derived through stem cell technology.

Possible future use of artificial gametes could increase the availability of eggs and sperms for fertility

clinics and gamete biobanks, with the possibility of their use for infertile persons who currently use

donated eggs or sperms in order to have a child. In keeping with this possibility, in 2018, the science

literature reported the creation of viable off-springs using cells from two (2) male mice.

Post-mortem reproduction:

This form of reproduction can be possible through: a) post-humous sperm procurement by harvesting

the gametes from a recently deceased man for future use by his surviving female partner; b) using cryo-

preserved eggs, sperms, or embryos from a deceased partner so that the remaining partner could have a

child (surrogacy may be required to complete the process for a man); or c) using donated cryo-preserved

eggs, sperms or embryo after the death of the donor in a donation procedure or in combination with

surrogacy.

Surrogacy:

A surrogate is a woman who bears a child on behalf of another woman, using ART either by having her

own eggs fertilized by the other woman’s partner, or from the implantation in her uterus of a fertilized

egg from the other woman.

The ethical issues surrounding surrogacy invoked prolonged debate among the members of the IBC.

This occurred against the background where some states permit surrogacy which is regulated under

specified conditions, while in others this activity is overtly forbidden and so some affluent citizens opt

to travel overseas to access the service in states where the practice is legal.

Some arguments against surrogacy include:

1. Surrogates are often women with few options for meeting compelling financial needs, which

render them vulnerable to exploitation by intermediates. In some cases, an agency makes the

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arrangement, thus rendering it a form of organized commercial enterprise involving payment to

the agency, the affiliated clinic, and to the surrogate;

2. There is the possibility of a lack of real informed consent, as women entering the surrogacy

process are often not able to anticipate the risks they may face. Some contracts prohibit further

contacts between the intended parents and the surrogate, and both parties may suffer from a lack

of information. Further, on signing the agreement, the surrogate may not foresee but may face

discrimination subsequently, or experience specific problems related to the surrogacy such as

psychological distancing of the pregnancy, or a strong link to the child that will then have to be

given up;

3. Surrogacy constitutes an expression of the commodification of a woman through her social role

as a mother; and

4. Surrogacy may cause an intrusion in the private life of the surrogate, as the intended parents may

seek to dictate the workday, diet and lifestyle of the surrogate purportedly on behalf of the unborn

child.

Some arguments for accepting surrogacy include:

1. Surrogacy may represent the last opportunity to become parents. e.g. the woman who lost her

uterus but wishes to have a child of her own;

2. Surrogacy when done for altruistic reasons secures the interests and rights of the child, secures

the autonomy and welfare of the surrogate and her family, and enables the successful

involvement of the intended parents. It prohibits commercial surrogacy and the solicitation of

commercial surrogacy services overseas;

3. Using utilitarian concepts where the market is an accepted reality and gestation can be sold, then

there needs to be legal regulation of the market. The amount of compensation to the surrogate

for associated costs of pregnancy and the disturbance in her working and family life would need

protection by the society through laws; and

4. Cross-border surrogacy has an advantage in creating territorial distance between the intended

parents, the child, and the surrogate mother, thus reducing the possibility of any relationship

between the child and the gestational mother.

Genetic diagnosis:

Pre-implantation diagnosis uses a genetic test to select embryos for implantation into the uterus after

they have gone through in-vitro fertilization and is used for couples who have a high risk of having a

child with a serious genetic disorder. Pre-implantation genetic screening has also been used to identify

chromosome errors in embryos in order to improve the successful outcome to pregnancy using IVF.

THE IMPACT OF ART ON CONCEPTS OF PARENTHOOD

Parenthood is a social concept referring to the state of being a parent. It is a relational condition defining

the connection of a parent to a child. A parent has rights, duties and responsibilities towards a child.

Historically, parents have been simultaneously genetic parents, gestational parents, and social parents

(i.e. educators).

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The term ‘genetic parents’ refers to those persons who are biologically linked to the child through having

provided the gametes (sperms and eggs) that produced the child. The term ‘gestational parent’ refers

to the ‘birth mother’ i.e. the gestational surrogate who carried the fertilized egg of the biological parent

through gestation in her womb to delivery. Social parents refer to those persons who have the social

responsibility of parenting the child, caring and nurturing its development without necessarily being

genetically linked to the child.

However, with the advent of ART techniques, new ways of becoming a parent have developed that break

the junction of genetic, gestational, and social aspects of parenthood. Modern parenthood now

encompasses families beyond the traditional two-parent, male-female partnerships.

SOCIAL AND PSYCHOLOGICAL IMPLICATIONS

The technological imperative:

This is a view promoted by some persons who argue that new technologies are inevitable and essential,

and that they must be developed and accepted for the benefit of society.. Utilizing technological

innovation as possible solutions for problems in society, aided by constant media reference to successes

has created a general social acceptance of the new technologies. However, despite the power gained by

repeated publicity, concerns still exist regarding unknown side-effects and the important issue of

distributive justice - that is, adequate resource allocation and distribution, ensuring access to health care

for the rich as well as the poor

ARTs are often advertised as the response to infertility to ensure the safe delivery of a healthy baby

while sometimes hiding the risks, including the high rate of failure of the process, and so a systematic

review of the results of different technological approaches is urgently needed.

Psychological effects:

Historically there has always been a great pressure on women to bear children, and the World Health

Organization (WHO) proffers that mental health problems may develop as a consequence of

reproductive health problems. Consequently, with the development of ARTs, renewed psychological

pressure has been placed on individuals (both men and women), their partners, and their family to look

at ART as a possible way to resolve the problem of childlessness.

Yet repeated attempts of unsuccessful assisted reproduction cycles (the failure rate is high) may lead to

a state of lasting sadness and lower self-esteem, both for men and women.

Cross-border reproductive services:

Cross border reproductive health care is a term that more appropriately captures the unavailability of

ART treatment in one country and its availability in another country. However, cross border movements

from rich countries to low income countries where many women are unemployed may lead to the

exploitation of this vulnerable group and deepen the difficulties suffered by local health services.

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If trans-national surrogacy is to be accepted, however, clear agreements and regulations are needed as

uterus trafficking and exploitation of poor women must be considered through the lens of the basic

human right to equality, as well as the rights of intended parents.

Other social aspects:

The delayed age of parenthood after age 40 years is linked to cultural perceptions of women’s

reproduction and represents an increased risk to women’s health. This phenomenon of delayed age of

parenthood has been facilitated by the access to ART.

Pregnancy in older parents means a need for more health services, and the reorganization of work and

retirement. Where the budget of public services is insufficient, individual responsibility in health must

be taken into account.

SOME ETHICAL AND LEGAL ISSUES

Legal recognition of parenthood:

In order to protect the rights of a child to association with their parents, States have an obligation (parents

patriae) to establish rules that would determine the adults responsible for the nurturing and upbringing

of the child.

ART has resulted in the de-coupling of sexuality, genetics, and pregnancy, but the principle of

‘childbirth to determine motherhood’ ensures that there is an adult immediately responsible for the care

of the child from birth.

With regard to paternity, the three standard pathways to legal fatherhood are: 1) marital presumption,

2) voluntary acknowledgement of paternity and 3) court ruling (including adoption ruling).

The matter of children:

The best interest of the child is cited in the United Nations Convention on the Rights of the Child (UN,

1989). A non-binding common agreement now exists regarding the protection of children born through

surrogacy.

Vulnerability:

Children’s vulnerability is an important aspect within the context of ARTs. They are possibly objects

of adults’ choices (not subjects in themselves) and are not yet capable of expressing their own choices

and autonomy. They are at risk of harm (and suffering damages) without the possibility of protecting

themselves.

Privacy:

The ‘right to know’ by the child and the anonymity of the gamete donors are issues that are still under

debate. Denying the ‘right to know’ may harm the donor’s offspring by leading to ‘accidental’ incest

between donors’ offsprings who do not know they share the same genetic origin. On the other hand,

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many parents do not want to disclose this information to their children for various reasons, including

fear that such disclosure may disrupt family unity, and that disclosure could cause stigma and

discrimination.

Society:

Parenthood is a social phenomenon and some ART methods, such as egg donation and surrogacy,

involve third parties who may suffer physical and psychological harms in order to fulfill another person’s

desire to have a child. Further, there are social and structural barriers to a person exercising reproductive

rights such as a lack of money, lack of available resources and restrictions by either family members

and/or the local community on seeking reproductive health care, or in choosing a partner or utilizing

ART. Many persons, especially women, have little control over their bodies in regard to their

reproductive rights.

RECOMMENDATIONS

Given the many ethical, cultural, legal and social challenges surrounding the matter, it is important for

societies to discuss the ethical aspects of new reproductive technologies and their impact on the concept

of parenthood before these technologies are developed and implemented. These discussions should

continue throughout the process of any such development and should lead to policies that are evidence-

based.

Since discussions have a broad cultural and social impact, they should go beyond the scientific,

academic, and institutional arena to include public debate, since such debate will contribute to the

responsible introduction of any new reproductive technology and is important for legitimate decision-

making. Public opinion should always be taken into consideration in all decision-making processes

within this field.

Further, various stakeholders have specific obligations:

Scientists, funding organizations, governments, NGOs and civil society at large should promote

scientific research and debates on:

1.Emerging new models of families and forms of parenthood;

2.The safety of ART methods;

3. Physical and psychological health, and the rights of gamete donors as surrogates;

4. Ethical, social, and legal implications of the acceptance of surrogate motherhood; and

5. Ethical and social consequences of the increasing age of parenthood.

International organizations should:

1. Promote public, policy and scientific debates about parenthood as a right versus parenthood as a

liberty, and simultaneously the responsibility towards the child;

2. Promote a debate about the perceived risks in the implementation of ARTs as a way of avoiding

17

genetic diseases and its possible consequences of the rights of persons with disabilities; and

3. Promote psychological and social research on the implications for children born as a result of ARTs

and on parents using ARTs.

National governments should:

1. Encourage professional organizations and relevant health professionals to promote constant

evaluations of the safety of ARTs, and develop ethical guidelines and the adoption of precautionary

measures for the application of ARTs

2. Establish and assure justice in the access to ARTs

3. Observe neutrality on different forms of parenthood chosen and not discriminate against any of their

citizens on the basis of their choice, and this should be codified in their national legislation

4. Evaluate changes in the age of parenthood, their reasons and the possible social and policy measures

required

5. Provide counselling for persons using ARTs, particularly those using donated gametes or embryos,

which should be human-rights based and oriented to provide adequate information to the persons

involved.

The abovementioned extensive deliberations and recommendations on the matter made by the

International Bioethics Committee of UNESCO will now be finalized for submission to the head office

of UNESCO, for distribution to the various contributory countries around the world for their possible

adoption as policy and legislation where beneficial. If any reader would like further details on any of

the issues described above, they are invited to consult the full IBC Report on ARTs when it is released

on UNESCO’s website at the end of 2019.

18

The Human Person Considered: Some Observations on the Nature of Bioethics in

Hinduism - Athene Aberdeen

Introduction

It is possible to attempt a systemic analysis of ethics in Hinduism using the unified concept of the human

person. This paper looks briefly at the concept of the person in Hinduism- a unified one that clarifies the

relationship between the body and the mind/soul. It explains the role of Dharma, Moksha, and Karma,

key beliefs of the orthodox Hindu and shows how traditional Ayurvedic medicine contributes to this

unified concept of the human individual. The paper concludes with a brief look at two well-known topics

in bioethics, abortion and euthanasia and the dilemma they present to practicing Hindus. Awareness of

the orthodox beliefs of the South Asian Indian population in our midst, we think, can lead to better

bioethics consultations in our region and elsewhere.

1. The Individual within the Hindu worldview

In the classical view, Hindu philosophy is codified in several scriptural documents the most important

being the Vedas circa 2000BCE, the Upanishads circa 800 BCE and the Bhagavad Gita circa 800 BCE.

Because of its long existence Hindu philosophy shares certain beliefs with its offshoots, Buddhism,

Jainism, and Sikhism with respect to karmic theory and the cycle of life, death and rebirth. What is of

interest to medical ethics is that they all three have a similar philosophy towards life and towards death

(1). In the more recent past, circa 100 CE, the fully- fledged system of indigenous medicine, Ayurveda

emerged in South Asia. Ayurveda is considered a compendium of science and philosophy and fits neatly

within the above ethos (2).

A central tenet of the philosophical world view held by Hindus is that a unitary life force or Supreme

Being called Brahman connects all existence. Brahman has no form or shape, is timeless and eternal and

pervades everything, animate and inanimate. Human beings are ignorant of the fundamental unity of the

cosmos; thus, a Hindu’s goal is to engage in actions that lead to enlightenment and the realization of his

or her immortal soul; this soul is called the Atman. The Atman transcends the temporal and physical

concept of birth and death and is united with the universal Brahman. How can one understand the

metaphysical and religious implications of these statements and in what specific ways they impact the

Hindu person as well as their community? Space does not permit a detailed explanation, but a succinct

account is attempted in this paper.

To become aware of the Atman, the individual must remove the layers of ignorance from his own soul.

This is done in two ways, either through Karma or Moksha. Karma doctrine explains that all moral

actions have consequences that will be reaped in either this life or a future, determining one’s future

condition. Karma is the locus of individuality in the Hindu understanding of a person. Karma is critical

to Hindu beliefs on death and dying because the prospect of endless reincarnations the cycle called

Samsara, forces the one who is conscious of his or her failings to pursue practices that regulate this

endless cycle. Suicide in this context may prevent an individual’s duty to the gods through sacrifice, and

their obligations to perpetuate the family and uphold cultural heritage (3). However, the tradition also

19

states that only actions arising from selfish motives produce Karma. Thus, disinterested action such as

intentionally ending the life of a tormented terminally ill patient- active euthanasia- is permitted since it

can help dissipate the Karma of the person acting both in their past and present life which has not yet

begun to bear fruit (4). It may be that karma doctrine satisfies our moral need for our accountability of

our actions without perpetuating the image of God as the great Avenger (5). An understanding of Karma

by the non-Hindu is critical in medical ethics. The Hindu also views the person as one who can attain

Moksha. Moksha is interpreted as the pursuit of the knowledge of Brahman and Atman. Moksha is

experiential knowledge not found in the realms of the heavens or the gods but lies instead in the

ontological unity of the world (6). Although Moksha can be arrived at in one’s lifetime, it can be

impeded by Karma since accumulated Karma from bad/selfish actions do not lead to the freedom to

renounce the world (7). This renunciation is the aim of the Jains and Buddhist monks and certain

advance mendicants.

Another aspect of the individual person acting is found in the notion of Dharma. In the normal scheme

of things, Dharma is the codified practices that make up the “ought” of ethics in Hinduism and is

foundational for all Indian thought (8). In the singular, Dharma refers to the established norms to which

the individual shall conform to the best of his or her ability. In the plural, Dharma refers to the

multiplicity of moral acts necessary to constructing and maintaining universal order, like one’s relation

to other human beings, the duties of caste and the stages of a person’s life. While the average Hindu

may not have all these considerations in mind, beliefs about the next life, rebirth, heaven and liberation

are always found, but are manifested in varying ways (9). Such considerations are also linked to Hindu

traditional medicine, Ayurveda.

Medicine and the whole person

With Ayurveda there exists a certain symbiosis of medicine and morals. For example, Ayurveda deals

with the microcosmos and the macrocosmos when it observes the person as grounded in nature: with

diet, climate, soil, season, time and place as factors that must be reckoned with in the healing enterprise.

Health and healing are therefore considered acts of nature. The preventive and promotive aspects of

medicine are addressed in the injunction that health is more than what the doctors do; it is a total lifestyle

that carries one from cradle to grave. Or, the injunction that health is not the ultimate good but the

penultimate good. For all these examples, the karmic and dharmic implications for the person are thereby

understood. Ayurveda also deals with the mind-body connection and this parallels the orthodox view

that the person is an integrated whole, physical, mental, social and spiritual. The emphasis on human

responsibility is also addressed in relation to health and disease, happiness and suffering, since all are

considered the consequences of an individual’s Karma. Finally, death is acknowledged as a natural

process not evil or an object of divine punishments as in other cultures. Death is defined as the opposite

of birth not of life (10).

The consideration of Ayurveda as representing a genuine Hindu bioethics that can deal with those

dimensions not adequately dealt with in Western medicine has been subject to much scholarly dispute

(11). One area of concern is that spiritual aspirations that seem to have higher moral claims tend to

trump the social world of worldly obligations, and in so doing they radically relativize or trivialize moral

codes. But the rationality of the whole person within Hinduism does not support such a position (12).

20

Indeed, the orthodox view that the human person is an integrated whole also exists in Western medicine

with its Christian moral underpinnings. However, the Natural Law bases of Roman Catholic ethics or

even the centrality of tradition in Jewish ethics, heavily nuanced as they are, do not make for easy

comparison with the methodologies of Hindu bioethics. (13)

Two modern dilemmas

Hindu philosophy sees Self as constitutive of four areas: somatic- body and emotions, social- family,

caste and community, spiritual- striving for liberation of the Self through the dharmic observances, and

psychic in which the tensions of the values of an active life are played out against those of the reclusive

life. Such dimensions also refer to the four life goals and are understood as not standing in a hierarchy

but form a unified whole of a person’s identity. There are however some procedures in modern medicine

that can lead to dilemmas for the believer, and two of these are abortion and euthanasia.

For instance, when a Hindu woman contemplates having an abortion, she is aware that all aspects of her

life are affected, when the role of Karma and the consequences of such an act are considered.

Specifically, her somatic dimension is thrown off balance, her social, spiritual, and psychic dimensions

are compromised because in traditional medical texts, pregnancy is a special state in which the unborn

have a moral status which merits special protection. In this scenario not only is the woman’s personal

desire to achieve eventual liberation of her own Self, Moksha, is harmed, but also the natural and

necessary cycle of life and death, Karma, for both herself and child is interrupted (14). In addition. the

cardinal value of ahimsa- do no harm is violated.

Similarly, with euthanasia all the dimensions are compromised. As self-willed death, one is given the

‘freedom to leave’. (15). The spiritual aspect of euthanasia lies with the believer’s dharmic duty which

can lead to attaining liberation or Moksha. If forced to be euthanized, the same consequences of an

interrupted karmic cycle of life and death affects the spiritual, psychic, social and somatic dimensions

of the person. One may add that legal consequences can occur if as in India, fasting to death to achieve

one’s Moksha is equated with suicide. (16)

Conclusion

The consideration of the person as a unity is crucial to understand and appreciate Hindu ethics. The

religious basis to this philosophy and its enduring quality are found in the Hindu scriptures that describe

the human soul as striving to become one with Brahman, the Supreme Being or Unitary life force that

connects all of existence. The concepts of Karma, Moksha and Dharma are the doors by which the

person enters and strives to achieve unity with Brahman or become liberated. The codified practices of

Dharma are important as they provide content to analyse an ethics that is not only general in nature but

impinge upon the understanding of medicine and health. These ethics are context-bound and

particularistic unlike that of the West, with its pluralistic societies and avowed neutrality on religion,

religious beliefs and practices in healthcare. In our time, certain medical procedures compromise Hindu

orthodox beliefs. It is therefore necessary to hold all these issues in mind when dealing with persons of

South Asian Indian origin where bioethics is concerned.

21

REFERENCES

1. Deshpande, Ohm, M. Carrington Reid, and Arun S. Rao. 2005. “Attitudes of Asian-Indian Hindus

Toward End-of-Life Care”. Journal of the American Geriatric Society 53: 131-135. pp. 131-132.

2. Crawford, Cromwell, S. 2001. “Hindu Bioethics for the Twenty-First Century”. Journal of Hindu

Christian Studies: vol. 14 article 9. 25-30. Accessed on 22/08/2016. Available at

http//dx.doi.org//10.7825/2164-6279.1252. p. 27.

3. Pandya, S.K. 1999. “Medical Ethics in India: Then and Now”. Acta Neurochir Supplement 74, 35-

46. p. 41

4. Pandya, p. 40.

5. Crawford, Cromwell S. 1995. Dilemmas of Life and Death: Hindu Ethics in a North American

Context. New York: State University of New York Press. p 75.

6. Heim, Maria. 2004. “Differentiations in Hindu Ethics”. In Blackwell Companion to Religious

Ethics, edited by William Schweiker, 341-354. Oxford: Blackwell. p. 342.

7. Heim, p. 352.

8. Coward, Harold J., Julius J. Lipner and Katherine K. Young. 1991. Hindu Ethics: Purity, Abortion

and Euthanasia. Delhi: Sri Satguru Publications. p. 2.

9. Heim, 341-346 and Clooney, Francis X. 1995. "Back to the Basics: Reflections on Moral

Discourse in a Contemporary Hindu Community." The Journal of Medicine and Philosophy 20 (4),

439-457. p. 442.

10. Crawford, 2001, pp. 25-28 and Coward et al (1991) p. 80. and Crawford, Cromwell S. 2003. Hindu Bioethics for the Twenty First Century, SUNY Series in Religious Studies. New York: State University of New York Press. "Implications on Hindu Views on Death and Dying for Bioethics", pp.

195-196.

11. Sarma, D. 2008. “Hindu Bioethics?” Journal of Law Medicine and Ethics 36 (1) 51-58. p. 53.

12. Heim, p. 350.

13. Mackler, Aaron L. Introduction to Jewish and Catholic Bioethics. A Comparative Analysis.

Washington DC: Georgetown University Press, pp 55-57.

14. Coward et al, (1991) p. 4

15. Coward et al,(1991) pp. 5-6

16. Coward et al,(1991) pp. 74-75.

22

Refusing to Vaccinate – Is it Ethical in this Modern Era? – Hariharan Seetharaman

Louis Pasteur must be turning in his grave!

Ironically, in his home country France, more than one and a half centuries after his historical discovery

of the principle of vaccination, one in three people does not think vaccination is safe!

On 19th June 2019, the Wellcome Trust published the results of a global survey regarding peoples’

‘belief’ (sic) in the safety of vaccination!

The results showed that the highest proportion of people who did not ‘believe’ in the safety of vaccines

– lived in Europe!

Interestingly, 98% of people surveyed in Bangladesh ‘believed’ that vaccines are indeed safe!

The major heartening result of the survey is that globally about 80% of people still trust the vaccines!

The alarming aspect is 20% still consider vaccination to be unsafe!

The findings of this survey raise some important questions:

o What is ‘developed’ in the so-called developed world?

o Are per capita GDP and other such econometric measures accurate reflections of

‘development’?

o When it has been accepted beyond doubt by scientific evidence that vaccines are the most cost-

effective way to control infectious diseases, why is there any confusion of its efficacy in 2019?

o Why should there be questions regarding ‘belief’ in vaccination? – Faith is a matter for ‘belief’

– not science – science is deduction of evidence-based theories which does not require a ‘belief’

system to accept it! It is akin to asking someone if they ‘believe’ in gravity!

It is not an exaggeration to say that the biggest leap in mankind’s history of winning against diseases

and increasing life-expectancy is attributable to vaccination.

It has been very well known to the scientific community that over a century ago the scourge of ‘small-

pox’ was eradicated from the face of earth because of vaccination.

We are also on our way to eradicate many other diseases including poliomyelitis, tuberculosis?

Isn’t it preposterous that a measles epidemic surfaces back in 2019 when an effective vaccine is

available?

Why is the world devolving?

The answer lies in the recent attitudes of people – termed ‘vaccine hesitancy’.

The World Health Organization has identified vaccine hesitancy as one of the top ten global threats to

health as of 2019.

23

What are the possible causes for the rise in such a trend globally?

The advent of social media networks, instantaneous spread of fake news, politicisation of vaccination,

the so-called ‘anti-vaxxers’ movement gaining strength by pseudoscience, some world leaders openly

promulgating anti-vaccine statements – have all contributed to the current trend of vaccine hesitancy in

the world!

What are the ethical implications of vaccine hesitancy?

o Can the so-called pillars of Western bioethics be applicable in this situation?

o If autonomy has to be respected – is it right to make vaccination compulsory?

o But if vaccines provide the ‘herd’ immunity and prevent others contracting these infectious

diseases – can one’s autonomy supersede the greater common good ?

o In accordance with the distributive justice principle – can Governments formulate statutory

regulations to consider NOT vaccinating illegal? In many countries (e.g., Barbados) – not

educating a child is illegal – can vaccination also be treated in a similar manner?

o When many aspects of ‘public-health’ are governed by clear laws – why not vaccination?

Vaccination is mandatory for public education and for travel to countries in which the disease is

present, however the rise in private educational institutions as well as home-schooling provides

a loophole for the ‘anti-vaxers”

o Not vaccinating one’s child who can then contract and spread the disease to other vulnerable

children– can this be considered maleficence?

One thing is abundantly clear – such a trend must not be allowed to continue let alone increase!

Appropriate education of the public is absolutely the need of the hour – this must be given priority by

scientific and medical societies throughout the world

Politicization of vaccination must be abhorred

Even if legislation of vaccination may not be possible – at least spreading fake news with unfounded

data and pseudoscience must be criminalized

If vaccine hesitancy is not addressed in a warlike fashion – we will take the world back by centuries and

we will start seeing a downward trend globally in the overall longevity of humans.

24

Protecting Human Subjects – The Role of the National Research Ethics Committee

in St. Vincent and the Grenadines - Shakel Henson

(BSc, MD, MPH, MSc, MSc, PGDip, FRSPH, FRSTMH).

In recent times, there has been an increase in the number of medical schools that are located in St.

Vincent and the Grenadines (SVG). Following the closure of the only medical school that previously

existed in St. Vincent, four new medical schools were established, the first of which commenced in

2008. A fifth medical school is expected to open soon.

Previously, very few research projects were undertaken in SVG, however, the increase in the number of

medical schools in this country has resulted in more studies being carried out on Vincentians, people

who are citizens of SVG. It therefore means that there is a greater need to protect these potential research

participants from any risks of harms to which they may possibly be subjected.

In SVG, there is currently no known standardized document that outlines the strategies an ethics

committee ought to use to best protect human subjects who participate in research studies. It therefore

means that there is need for a reference document to be created that will act as a resource for researchers

and research ethics committee members in SVG.

While one of the roles of research ethics committees (RECs) is to protect research participants, RECs in

low- and middle-income countries (LMICs) like SVG have the additional burden of protecting

vulnerable populations who may be exploited by researchers for social, political and cultural reasons as

well as personal financial gains (Zarowsky, Haddad and Nguyen 2013). Although the members of RECs

have a moral obligation to protect research participants, performing this duty effectively in LMICs can

be challenged by a weak oversight and monitoring system and by researchers who have an underlying

agenda for personal gains. Additionally, as per Dhai (2005), members of RECs in LMICs tend to be

overworked and RECs are often understaffed. The National Research Ethics Committee (NREC) in

SVG is currently understaffed and does not function optimally. Lessons can therefore be learnt from

established RECs in LMICs so that the NREC can function more efficiently and effectively. With the

knowledge gained, this ethics committee would likely be better able to minimize the chances of being

burdened by common and preventable mistakes that ethics committees in LMICs tend to make.

The culture of LMICs is different from that of high-income countries, like the United States (US), upon

which some ethical guidelines are based (Sampson et al. 2013). Although these ethical guidelines, such

as the Belmont Report, outline how best to protect research participants, adhering to them in order to

protect participants may still be challenging for RECs in LMICs given the existing cultural differences

(Sampson et al. 2013). Research ethics committees in these LMICs therefore need to tailor their

approaches to the research and ethical review processes so that more culturally appropriate ethical issues

can be more readily identified and research participants better protected.

Research ethics committees have the responsibility to ensure that the research study is of sound research

design so that participants are not subjected to unnecessary risks of harms. They have a duty to review

25

research protocols and determine if the proposed work aims to maximize benefits and minimize risks of

harms to research participants (Horner and Minifie 2011). This role must extend beyond reviewing

protocols and should include monitoring and oversight of research to ensure that ethical practices are

incorporated into the research and participants are adequately protected (Horner and Minifie 2011).

This insufficient or lack of oversight issue and failure to protect research participants was evident in the

case of a 19-year-old healthy nursing student from the University of Rochester in the US, named Hoiyan

Wan, who died in 1996 following the administration of lidocaine as part of a research study (Horner and

Minifie 2011). This death could have been prevented if the necessary measures, like proper oversight,

were in place. Deaths, whether in a healthy research volunteer or an unhealthy subject, should never

occur in research. They must and can be avoided most of the times if measures like effective monitoring

systems and functioning oversight committees are implemented.

There are numerous historical cases of poor research conduct that have led to human subjects being

exposed to unnecessary risks of harms including death (Beecher 1966). At the Kennedy Krieger Institute

in the US, research was done on healthy children who were exposed to environmental lead so that the

effects of lead can be studied. (Pence 2015). This was unethical and should never have happened.

In another case, Jesse Gelsinger, a 17-year-old young man, was the subject of an experimental gene

therapy study at the University of Pennsylvania in 1999. He had inherited ornithine transcarbamylase

deficiency (OTC) but was managing this condition relatively well (Pence 2015). Researchers enrolled

him in a study that aimed to study the effects of OTC in order to find an effective treatment for babies

who were born with OTC. These researchers failed to mention that other OTC adults who had

participated in the study had been subjected to injury (Pence 2015). Without knowledge of the

aforementioned, Jesse enrolled in the study and was given the experimental treatment. Following this,

his liver failed and vital organs, like the kidneys and brain, shut down. He subsequently died (Pence

2015).

Another tragic case was that involving a healthy volunteer named Ellen Roche. She died in 2001 at

Johns Hopkins University after ingesting a respiratory depressant, which was a requirement of the study

in which she was participating (Pence 2015).

These cases occurred in a high-income country, the US, despite the presence of ethical regulations,

which are requirements that ought to be adhered to so that human subjects can be protected (45 CFR 46

2018). The aforementioned suggests that the existence of federal regulations, like The Common Rule,

are not sufficient to protect human subjects. They still need to be complemented by other factors because

ethical regulations are not always adhered to as would be expected (Horner and Minifie 2011).

Unlike high-income countries, many LMICs lack the regulations needed to protect research participants.

This means that human subjects in these countries are even more likely to be vulnerable to harms.

Besides the lack of regulations, other limiting factors, such as insufficiently trained and inexperienced

REC members, reduced transparency, conflicts of interest and loyalty to governments and/or institutions

also exist (Zarowsky, Haddad and Nguyen 2013; Amon et al. 2012). Enhanced awareness of some best

practices of RECs in LMICs is required to help improve and strengthen those RECs that are weak and

26

struggling and even guide those that are new. As Roets (2017) noted, the Nuremberg Code, Universal

Declaration of Human Rights and the Declaration of Helsinki are excellent sources of reference that can

be used by RECs in LMICs to learn more about protecting research participants from harm. The Council

for International Organizations of Medical Sciences’ (CIOMS) guidelines also serve as vital sources of

reference and are specifically geared to the application of international ethical principles to low-resource

settings, like the LMICs (CIOMS, 2016).

Knowledge of how other RECs in LMICs have applied ethical principles; recognized and subsequently

resolved ethical issues; strengthened capacity; and acted to optimally protect research participants would

be valuable to new and existing RECs in LMICs as they strive to protect human participants of research

(Coleman and Bouesseau 2008). An increased awareness of the strengths and weaknesses of the

practices of various RECs in LMICs will undoubtedly help the NREC in SVG to better protect human

subjects.

With the increasing number of medical schools in SVG and the demand for the professors of these

institutions to conduct research studies, a lot more research is being done in the country. Although the

NREC exists, establishing an ethics committee in each of these four medical schools would contribute

more to the protection of research participants in SVG.

Adhering to an evidence-based approach to solving ethical issues that would inevitably arise in research

protocols is highly recommended. This strategy will likely help members of the NREC, as well as other

RECs in SVG, to more effectively address ethical issues. Additionally, it may contribute to the enhanced

protection of human subjects who participate in studies that are done in this country.

Being a citizen and a keen observer of the operations of SVG’s national ethics committee, the author

has noted that the NREC of SVG is often understaffed and does not function as it ought to. It lacks the

resources to effectively monitor all research studies that are conducted in SVG. Additionally, the country

does not have regulations in place to govern the work of ethics committees. There are no laws dictating

that research studies must first be reviewed by an ethics committee prior to being executed. These

weaknesses contribute to increased vulnerability of the Vincentian people and thus warrant actions that

will better protect participants in research. Until it becomes a statutory requirement for all research

studies that are conducted in SVG to be reviewed and monitored by an ethics committee, measures need

to be in place to enhance the protection of human subjects who live there (Dhai 2005). One important

measure is education as there is a need to increase awareness of the problem and devise effective

solutions for this problem.

References:

45 CFR 46. 2018. “Title 45: Public Welfare Part 46 – Protection of Human Subjects.” Last modified

July 19. https://www.ecfr.gov/cgi-

bin/retrieveECFR?gp=&SID=83cd09e1c0f5c6937cd9d7513160fc3f&pitd=20180719&n=pt45.

1.46&r=PART&ty=HTML.

27

Amon, Joseph J., Stefan D. Baral, Chris Beyrer, and Nancy Kass. 2012. “Human Rights Research and

Ethics Review: Protecting Individuals or Protecting the State?” PLoS Med 9:e1001325.

Accessed July 24, 2018. doi: https://doi.org/10.1371/journal.pmed.1001325.

Beecher, Henry K. 1966. “Ethics and Clinical Research.” The New England Journal of Medicine 274

(24):1354-1360. Accessed January 8, 2019. doi: 10.1056/NEJM196606162742405.

Coleman, Carl H., and Marie-Charlotte Bouesseau. 2008. “How do we know that research ethics

committees are really working? The neglected role of outcomes assessment in research ethics

review.” BMC Medical Ethics 9. Accessed July 24, 2018. doi: https://doi.org/10.1186/1472-

6939-9-6.

Council for International Organizations of Medical Sciences (CIOMS). 2002. “International Ethical

Guidelines for Biomedical Research Involving Human Subjects”. CIOMS. Accessed July 24,

2018. http://www1.paho.org/hq/dmdocuments/2011/CIOMS%20Guidelines.pdf.

—. 2016. “International Ethical Guidelines for Biomedical Research Involving Human Subjects”.

CIOMS. Accessed August 24, 2018. https://cioms.ch/wp-content/uploads/2017/01/WEB-

CIOMS-EthicalGuidelines.pdf.

Dhai, A. 2005. “Research ethics review – protecting participants in research.” Samj South African

Medical Journal 95 (8):595-597. Accessed February 15, 2018.

http://www.samj.org.za/index.php/samj/article/view/1784/1109.

Horner, Jennifer, and Fred D. Minifie. 2011. “Research Ethics I: responsible conduct of research

(RCR)--historical and contemporary issues pertaining to human and animal experimentation.”

Journal of Speech, Language, and Hearing Research 54 (1): S303-S329. Accessed September

8, 2018. doi: http://dx.doi.org.ezproxy.is.ed.ac.uk/10.1044/1092-4388(2010/09-0265).

Pence, Gregory E. 2015. “Medical Research on Vulnerable Human Subjects.” In Medical Ethics

Accounts of Ground-Breaking Cases, edited by Gregory E. Pence, 186-207. New York:

McGraw-Hill Education.

Roets, L. 2017. “Protection of the human research participant: A structured review” SAMJ: South

African Medical Journal 107 (10):847-853. Accessed July 24, 2018. doi:

10.7196/SAMJ.2017.v107i10.12533.

Sampson, Deborah A., Dennis Caldwell, Andre D. Taylor, and Jacquelyn Y. Taylor. 2013. “Blending

Genetics and Sociocultural Historical Inquiry: Ethics, Culture, and Human Subjects Protection

in International Cross Cultural Research.” Yale Journal of Biology and Medicine 86:89-98.

Accessed September 8, 2018. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3584499/.

Zarowsky, Christina, Slim Haddad, and Vinh-Kim Nguyen. 2013. ”Beyond ’vulnerable groups’:

contexts and dynamics of vulnerability.” Global Health Promotion 20:3-9, 92-99. Accessed

August 18, 2018. https://search-proquest-

com.ezproxy.is.ed.ac.uk/docview/1369816737/fulltextPDF/4F3CAB587E614128PQ/1?account

id=10673.

28

The Influence of Interest Groups on the Policy-making Process for Health Research

Systems - Shakel Henson

(BSc, MD, MPH, MSc, MSc, PGDip, FRSPH, FRSTMH)

Introduction

Recognizing the need for more health research to be conducted and for the establishment of a stronger

health research system (HRS) within the English-speaking Caribbean (EC), the Health Research Policy

for the Caribbean (HRPC) was formulated by the Caribbean Health Research Council (CHRC) as part

of its 2004-2009 Strategic Plan (CHRC, 2009). Inputs were received from various Ministries of Health

(MOH), researchers, civil society and regional institutions in the EC (CHRC, 2009).

In EC countries like St. Vincent and the Grenadines (SVG), the social, cultural and political factors have

significantly impacted the policy implementation phase to the extent that there is still little research

conducted; insufficient awareness of the existence and functions of the REC; and poorly functioning

RECs.

Interest Groups – For Policy

Influencing Policy Formulation

Agenda Setting

Each Ministry of Health (MOH) within the EC has the responsibility for policy identification and

formulation (CHRC, 2009; Walt, 1994a). This governmental stakeholder takes a lead role in the policy

making process and thus controls the policy and associated budgets. Hence, the development of health

plans and the allocation of resources with regards to the HRPC is the responsibility of the MOH (CHRC,

2009; Walt, 1994a).

The Chief Medical Officer (CMO) takes control over how the policy is disseminated, monitored,

interpreted, enacted, applied, regulated and enforced (CHRC, 2009; Walt, 1994a). In SVG, though the

CMO does not change with a change in government, the country’s political system has great influence

on the CMO and the policy making process.

An Essential National Health Research Council (ENHRC) is encouraged in those EC countries with a

large population and having many actors involved in the research process. However, in countries, like

SVG, that lack these aforementioned criteria, the ENHRC is not instituted and the MOH takes a lead

position as well as the responsibility of managing the policy making process (CHRC, 2009). Besides

management, the ENHRC’s role also includes communication, which supports the agenda setting

component of the policy formulation phase, and the coordination of regional research efforts (CHRC,

2009; Longest, 2001).

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Legislation Development

It is expected that the MOH will also control the legislature governing the HRPC. However, it fails to

do so since for countries like SVG, there are no legislature governing research (CHRC, 2009; Walt,

1994a; Embassy & Permanent Mission of St. Vincent and the Grenadines, 2015).

Influencing Policy Implementation

Health research stakeholders aid in health research capacity building and provide feedback which then

influences the modification phase of the policy making process. By conducting research; obtaining

evidence from these research studies; and then subsequently implementing the evidence into practice,

health researchers contribute to the policy implementation phase (CHRC, 2009; Longest, 2001).

The Pan American Health Organization (PAHO) is a non-governmental stakeholder, whose role fits that

of an insider interest group (CHRC, 2009; Walt, 1994b). It is involved in financing; supporting the

policy development aspect; and working along with policy makers and senior health officials throughout

the EC (CHRC, 2009). Regional Health Institutions like CARPHA have a role in the policy

implementation phase. They contribute to the strengthening of national HRSs through the conduct of

research (CHRC, 2009; Walt, 1994a).

Other interest groups like the Bioethics Society of the English-Speaking Caribbean (BSEC), an insider

group, contribute to capacity building and increased awareness of the existence and functions of research

ethics committees (RECs) (CHRC, 2009). The CHRC is another insider group that has the responsibility

of policy implementation. It aids in the mobilization of both human and financial resources so as to

strengthen the HRSs in the EC (CHRC, 2009).

Influencing Policy Modification

Using either face-to-face or telephone interviews as part of a quantitative assessment, feedback was

obtained to guide the development of the HRPC (CHRC, 2009). Representatives from five of the EC

were targeted including stakeholders from various entities including the MOH, civil-society

organizations and the media to support policy modification (CHRC, 2009).

Interest Groups – Against Policy

There are no notable interest groups that are actively against the HRPC. However, social, cultural and

political factors have influenced the HRPC to the extent that research is still insufficiently conducted

and inequality of health outcomes, which may be due primarily to differences in race and socioeconomic

factors, exist (Aarons, 2015; CHRC, 2009). Policy formulation and implementation phases have been

negatively affected by these social, cultural and political factors (CHRC, 2009; Aarons, 2015; Longest,

2001).

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Conclusion

Protecting human subjects involved in research in EC countries, like SVG, is an important feature of the

HRPC (CHRC, 2009). Hence, it is essential that a high quality research review system be established

and maintained (Coleman and Bouesseau, 2008). Given the high costs associated with auditing and the

accreditation of programmes, it is recommended that a self-assessment tool be used to help identify the

gaps in this policy; enhance the quality of the national RECs; improve research outcomes; protect human

subjects; ensure an effective and efficient ethical review process; and promote best practices with

regards to research in the EC (Coleman and Bouesseau, 2008; Sleem et al., 2010). With the aid of policy

evaluation, capacity-building and policy modification, the goals of the HRPC can be achieved following

effective policy implementation (CIOMS, 2002; Walt, 1994d; Strosberg, 2014).

References

Aarons, D.E. (2015) ‘Research: An ethical answer in addressing our people’s health problems and

inequities’, West Indian Medical Journal, 64 (2), pp.97-100, [Online]. Available from:

http://online.uniongraduatecollege.edu/mod/folder/view.php?id=61996.

B. B. Longest, "A Model of the Public Policymaking Process in the United States,” Health

Policymaking in the United States, Chicago, Health Administration Press, 2002, p. 115. A

simplified model is also provided.

B.B. Longest, "Influencing Public Policy Environments,” in Back to Basics: Foundations of

Healthcare Management, Chicago, Health Administration Press, 2001, pp. 211-238.

CARPHA – Caribbean Public Health Agency (2016) Research Ethics [Online]. Available from:

http://carpha.org/What-We-Do/Research-Training-and-Policy-Development/Research-Ethics.

C.H. Coleman, M.-C. Bouësseau, "How Do We Know That Research Ethics Committees Are

Really Working? The Neglected Role of Outcomes Assessment in Research Ethics Review," BMC

Medical Ethics, 2008, 9:6, doi:10.1186/1472-6939-9-6.

CHRC - Caribbean Health Research Council (2009) Health Research Policy for the Caribbean

[Online]. Available from:

https://www.healthresearchweb.org/files/CaribbeanHealthResearchPolicy1.pdf.

CIOMS (2002) Council for International Organizations of Medical Sciences – International

Ethical Guidelines for Biomedical Research Involving Human Subjects [Online]. Available

from: http://www.cioms.ch/publications/guidelines/guidelines_nov_2002_blurb.htm.

Embassy & Permanent Mission of St. Vincent and the Grenadines (2015) The Constitution of St.

Vincent and the Grenadines [Online]. Available from:

http://www.embsvg.com/Documents/Constitution/Constitution.pdf.

31

Gefenas, E., Dranseika, V., Cekanauskaite, A., et al. (2010) ‘Non-equivalent stringency of ethical

review in the Baltic States: a sign of a systematic problem in Europe?’, J Med Ethics, 36, pp.435-

439, BMJ [Online].

G. Walt, "Can Interest Groups Influence Government Policy," in Health Policy: An Introduction to

Process and Power, Johannesburg, Witswatersrand University Press, 1994b, pp. 97-121.

G. Walt, "Evaluation and Research: Feeding into Policy," in Health Policy: An Introduction to

Process and Power, Johannesburg, Witswatersrand University Press, 1994d, pp. 178-201.

G. Walt, "Implementation: Do Those Who Implement Decide?," in Health Policy: An Introduction to

Process and Power, Johannesburg, Witswatersrand University Press, 1994c, pp. 73-96.

G. Walt, "The Government Policy Arena: The Heart of Policy Making," in Health Policy: An

Introduction to Process and Power, Johannesburg, Witswatersrand University Press, 1994a, pp. 73-

96.

H. Silverman, H. Sleem, K. Moodley, et al., "Results of a Self-Assessment Tool to Assess the

Operational Characteristics of Research Ethics Committees in Low- and Middle-Income

Countries," J Med Ethics, 2014, 0:1-6. doi:10.1136/medethics-2013-101587.

H. Sleem, R.A.A. Abdelhei, I. Al-Abdallat, et al., "Development of an Accessible Self-Assessment

Tool for Research Ethics Committees in Developing Countries," J Empir Res Hum Res Ethics,

2010, 5(3): 85–98. doi:10.1525/jer.2010.5.3.85.

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Program Gaps,” J. of Empirical Research on Human Research Ethics, 2014, Vol. 9, N. 2, pp. 3-11.

Available online from: http://online.uniongraduatecollege.edu/mod/page/view.php?id=62888.

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Together Planning, Evaluation, and Action. Battle Creek, MI, W.K. Kellogg Foundation, 2004.

32

BSEC MEMBERS’ ACCOMPLISHMENTS:

Dr. Derrick Aarons

MB.BS.(UWI), M.Sc.(Bioethics), Ph.D.(McGill) Founding President - BSEC

New Appointments:

2018 – 2021: Member – The International Bioethics Committee (IBC) – UNESCO

2018 – Health Registrar & Head - The Health Secretariat, Ministry of Health, Turks & Caicos

Islands

2018 – 2019: Thesis Supervisor - Masters in Bioethics, Clarkson University, New York, USA

2017:Part-time Lecturer – Ethics in Business; Dept. of Management Studies, UWI, Trinidad

Publications:

Aarons D. The history of research ethics in the English-speaking Caribbean. CANREC

Bull.2019;01:3-7.

Aarons D.E. Addressing the challenge for expedient ethical review of research in disasters and disease

outbreaks. Bioethics; 2018;00:1-4. https://doi.org/10.1111/bioe.12543

Aarons DE. Challenges of Conflicts of Interest in the Caribbean: An Ethical Concern. Caribbean Med

J. 2018; 79(1): 12-16.

Aarons D.E. Research in epidemic and emergency situations: A model for collaboration and

expediting ethics review in two Caribbean countries. Developing World Bioethics Journal

Jul.2017;00:1-10. https://doi.org/10.1111/dewb.12157.

Aarons D.E. Exploring risks/benefits balance and exploitation in biomedical research: Some

considerations. Revista Bioética 2017; 25(2): 320-7.

Aarons DE. Research ethics committees are crucial for health research. [Editorial]. Caribbean

Medical Journal 2017; 78(2): 3.

Aarons D.History of the Bioethics Society of the English-speaking Caribbean. Bioethics Caribe

2017;8:3-15

33

Special publications:

Author – A Guide to Ethical Practice of the Health Professions in the Turks & Caicos Islands -

Apr.2018

Author - Template for a Conflict of Interest Policy for the Caribbean Public Health Agency – Mar.

2017

Author - Template for the Draft HCC Conflict of Interest Policy and Guide for the Healthy

Caribbean Coalition and Caribbean Civil Society Organizations – Feb. 2017

Some Oral Presentations:

Keynote Addresses:

Jul.’17: “The Human Research Protection Framework in the Caribbean: An Overview” –

IMPACT Justice/CARPHA Meeting on Model Legislation to Regulate Research –

B’dos

“Draft Position Paper on Human Subjects Research in the Caribbean” – IMPACT

Justice, Barbados

International Conference Presentations:

Sept.’19: The ‘disability-rights perspective’ in the bioethics agenda - Expert Group Meeting,

United Nations Human Rights Special Procedures - Geneva, Switzerland

Nov.’18: Bioethics and the environment against the violation of human rights: Redefinition

of agrarian and food sovereignty – VII Congres of the UNESCO Bioethics Network

of Latin America & the Caribbean – Brasilia, Brazil

Nov.’17: Current international ethical guidance on use of alternative research designs: A

Caribbean perspective – Global Forum for Bioethics in Research International

Conference, Bangkok, Thailand

Oct.’17: Ethical concerns for global cancer research – 6th International African-Caribbean

Cancer Consortium Conference, Miami

Aug.’17: Addressing the challenge for expedient ethical review of research in disasters and

disease outbreaks – Matariki Research Ethics Workshop, Herstmonceux Castle, UK

Jul.’17: The ethics of research collaboration in emergencies: A collaborating role for

research ethics committees – Oxford Global Health and Bioethics International

Conference, UK

34

Grace Sirju-Charran

Vice-President, BSEC

▪ Re-appointed for a second 4-yr. term (2018-2021) as a member of UNESCO’s World Commission

on the Ethics of Scientific Knowledge(COMEST)

▪ Re-appointed for a second term as Vice-chair of COMEST

▪ Continues to serve as special guest lecturer in Bioethics and Biotechnology, FST, UWI, St. Augustine

2012-present)

Conference/Other presentations

Preliminary draft report of COMEST on: “Water Ethics: Oceans, Fresh Water, Coastal areas, ” 10th

Session of COMEST and 24th Session of IBC UNESCO, Paris,11-15 Sept. 2017

“The SDGs and Land Use Ethic” presented at COMEST Workshop held in Beirut, Lebanon. April 03,

2019

“The Declaration of Ethical Principles in relation to Climate Change (2017)” presented at COMEST

Workshop held in Beirut, Lebanon. April 05, 2019

“New Global Ethical Guidelines for Water Management” Invited Panelist on UNESCO International

Water Conference (UNESCO, Paris, May 13, 2019): “Towards a new global vision for water ethics on the

earth”

“Land Use Ethic” presented on behalf of COMEST at the joint 26th session of IBC and 11th session of

COMEST held in Bangkok, July, 2019

“Religious Ethics” presented at a pilot course on “Teaching Inter-Religious Studies organized by the

Working Group for Inter-Religious studies and the UWI School of Education. July, 22 2019

35

Cheryl Macpherson

BSEC’s Past President

Awards and Accomplishments

2019 Co-organizer. Global warming and bioethics. Hastings Center, NY. June 3-4.

2019 Best Oral Presentation, Faculty. St George’s University, Research Day.

2017-Present WHO Consultant, Ethics of Vector-Borne Diseases.

External Funding

ACTIVE R25 TW009731-01 (Renewal) 05/01/19-12/31/23

R25 TW009731-01 06/01/14-12/31/18

S. Philpott-Jones, PI/PD; CC Macpherson CO-PI

NIH-Fogarty International Center

Caribbean Research Ethics Education Initiative

Peer Reviewed publications 2017-2019

1. B Wills, Macpherson CC. Living good and healthy lives on a changing earth: What should

bioethics do? Hastings Bioethics Forum. July 2019. https://www.thehastingscenter.org/living-

good-and-healthy-lives-on-a-changing-earth-what-should-bioethics-do/

2. J Ashcroft, Macpherson CC. The complex ethical landscape of biobanking. Lancet Public Health

Ethics. 4: June 2019 e274-e275. https://www.thelancet.com/action/showPdf?pii=S2468-

2667%2819%2930081-7

3. Macpherson, CC. Research ethics guidelines and moral obligations to developing countries:

Capacity‐building and benefits. Bioethics. 2019; 33: 399– 405. https://doi.org/10.1111/bioe.12577

4. Jennings N, Chambaere K, Macpherson CC, Deliens L, Cohen J. Main themes, barriers, and

solutions to palliative and end-of-life care in the English-speaking Caribbean: a scoping review.

Rev Panam Salud Publica. 2018;42:e15. https://doi.org/10.26633/RPSP.2018.15

5. Macpherson CC. (2018) Bringing Values, Relationships, Environments, and Climate Change to

Policy Deliberations, The American Journal of Bioethics, 18:3, 63-65, DOI:

10.1080/15265161.2017.1420835 2018. Invited.

6. Macpherson CC, Wynia M. Speaking up: are health professionals obligated to advocate for actions

to reduce the health risks of climate change. AMA Journal of Ethics 19: 1202-1210. 2017

(http://journalofethics.ama-assn.org/2017/12/pdf/msoc1-1712.pdf ). Invited.

7. Hill J, Macpherson CC. Are Physicians Obliged To Lead Environmental Sustainability Efforts in

Health Care Organizations? Case Discussion. AMA Journal of Ethics 19: 1164-1173. 2017.

(http://journalofethics.ama-assn.org/2017/12/pdf/ecas2-1712.pdf ). Invited.

36

CONGRATULATIONS

BSEC extends sincere and hearty congratulations to BSEC members:

Dr Shakel Henson: who obtained a Master's in Bioethics degree from Clarkson University in the

United States. Graduated on June 14th 2019.

Dr. Seetharaman Hariharan: who was appointed Director of the School of Graduate Studies

and Research, UWI, St Augustine, Trinidad & Tobago.

Prof. Hari has had an outstanding clinical and academic research career, which accumulated in his

Doctorate in Health Economics four years ago. He is currently Professor of Anaesthesia & Critical

Care Medicine, and also President of the Trinidad & Tobago Anaesthetists Association.

We are very proud of Prof. Hari's accomplishments, and wish him all the very best in his new

endeavour in spearheading graduate studies and research at the UWI in T&T.

Ms. Shereen Dawkins: B.Pharm (Hons), M.Sc. (Health Care Law & Ethics)

An outstanding Pharmacist-Ethicist, Shereen was the successful candidate for the highly coveted PhD

Fellowship in International Research Ethics at the Centre for Medical Ethics at the University of Oslo,

Norway!

As the successful PhD candidate and Research Fellow, Shereen will be a part of an interdisciplinary

research group focusing on international research ethics, global health and human rights, and will be

involved in the project "Incorporation of Ethics in Pharmaceutical Authorization Regulatory

Procedures."

She will be employed as a research fellow for three years, during which she will be expected to complete

her doctoral degree (PhD).

Shereen has been a member of BSEC from its formation in 2006, and served as Hon. Secretary 2008-

2010, BSEC Newsletter Editor (2010 - 2014) Vice President (2010 - 2013), and a Regional

Representative (2015-2019).

Join us all in saying - Heartiest congratulations to Ms. Shereen Dawkins - Exemplary BSEC member!!

Special thanks to the Editorial Committee:

Dr. Grace Sirju-Charran, Chief Editor;

Ms. Kamille Williams, Layout/formatting