Eubios Journal of Asian andInternational Bioethics
EJAIB Vol 17(4) July 2007

ISSN 1173-2571

Copyright ©2007 Eubios Ethics Institute (All rights reserved, for commercial reproductions).
31 Colwyn Street, Christchurch 8005, New Zealand
c/o Darryl Macer, RUSHSAP, UNESCO Bangkok, 920 Sukhumvit Rd, Prakanong, Bangkok 10110, THAILAND

Eubios Ethics Institute World Wide Web: eubios.info/index.htm
Official Journal of the Asian Bioethics Association (ABA)

Contents

page

Editorial: Bioethics Education and Discourse
97
Towards a philosophical framework for Bioethics Educationin India - The role of religion and spirituality98- Daphne Viveka
Principles for Public Health Ethics – A Transcultural
Approach104- Peter Schröder-Bäck
Risk Information Assessment in Pharmacological Projects 109- Gabriela Marodin, Diana Monti Atik, Danielle
Beheregaray Schulz, José Roberto Goldim
Palliative Care in India: Ethical Issues Underlying
Paradigmatic Shifts
112- Suhita Chopra Chatterjee
A Sikh Perspective on Human Genetic Advances
115- Gursatej Gandhi
Psychopharmacological Enhancement: Self-determination or
self-manipulation?
120-Christina Pinsdorf
Respecting Vulnerable Persons
125- Ann Boyd
Conferences
127
Ordering Information
128

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The papers do not represent the views of Eubios Ethics
Institute, or the editor or editorial board, which upholds theprinciples of freedom of expression.
Editorial address:
Prof. Darryl Macer, RUSHSAP, UNESCO Bangkok,
920 Sukhumvit Rd, Prakanong, Bangkok 10110, THAILAND
Fax: Int+66-2-664-3772
Email: d.macer@unescobkk.org

Deadline for the September 2007 issue is 30 August, 2007.

Editorial: Bioethics Education and Discourse- Darryl Macer, Ph.D.
UNESCO Bangkok, Thailand
This issue starts with a call for inclusion of spiritual
dimensions into bioethics education, adding detail to someelements included in the Joint Plan of Action for Regional
Networking in Bioethics Education – Towards Better Bioethics
Education adopted at the UNESCO Asia-Pacific Conference
on Bioethics Education held in Seoul (26-28 July, 2006). Sister
Daphne outlines an approach for experience and deliberation toaid the cultivation of moral values. The question of when we
can teach which kind of moral values is a central researchquestion in bioethics education. At UNESCO Bangkok I am
working with several museums to develop teacher training,youth leader training, and student training with a mixture oflectures, group work, moral games, and museum displays.
From December 2007 there will be a display on bioethics andbiotechnology at the Science Centre for Education in Bangkok
which will run for a year, and visitors to Bangkok are invited(the display and interactive resource materials will be in Thaiand English). We are also working with several partners inother countries to develop materials that can be used astraveling road shows of bioethics, all combined with evaluation
methodology and feedback forms that we hope will answer
some of these residual questions.
The other papers in this issue discuss principles for publichealth ethics, the adoption of palliative care in India, and how
to respect vulnerable persons which explores experience inThai prisons. There are two papers on pharmacology, one
reports the way that risk assessment information was presented
in informed consent forms, and the other is philosophicalexamining enhancement. The papers in the issue provide a mixof descriptive data along with philosophical analysis. EJAIB is
open to authors from outside Asia, and the key component of
the papers is that they offer something to the international andcross-cultural dialogues on bioethics. There is a lot of food forthought in this issue, and I invite commentators to send there
comments for publication. In this way discourse, that is criticalfor our education in bioethics, is developed.

Eubios Journal of Asian and International Bioethics 17 (July 2007)98

Towardsaphilosophicalframeworkfor
Bioethics
Education in India - The roleof religion and spirituality- Daphne Viveka, rscj, Ph.D.
Patna, North India
Email: dviveka@gmail.com
Abstract
There is a growing interest in bioethics education in Asia
today. The UNESCO Asia-Pacific conference held in Seoul,(26-28 July, 2006) adopted a Joint Plan of Action for Regional
Networking in Bioethics Education – Towards Better Bioethics
Education, Paragraph 2 of which reads: “Societies will progressalong a more just, equitable and sustainable basis if thecultural, ethical and spiritual values of those societies arecentral determinants in shaping technology and science.”
I would like to reflect on how India can respond to this call,considering two contexts. The first is the multicultural, multireligious, secular democracy that India is. The second relates tothe strictly secular nature of the present-day bioethicaldiscourse. In a secular world, what framework would bestenable the contribution of cultural, ethical and, especially,
religious and spiritual values in bioethics education?
This paper is situated in two moments – the first, an
epistemological moment, defining the context, and theformative role of religion and spirituality in attitudes and values
that students bring to the table. The second, a pedagogicalmoment, which evaluates bioethics education today, anddescribes the role of religion and spirituality in formation of thecomponents of moral experience, viz. moral perception, moral
justification and moral motivation.
A philosophical framework of capacity building in theprocess of “Deliberation” is proposed, which starts with themoral experience of the student and guides it towards theexpertise required of participants in the moral discourse. The
importance of inter-cultural and inter-religious dialogue in thebioethics education process is discussed.
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1. Introduction
There is a growing interest in bioethics education in thecontinent of Asia today. The UNESCO Asia-Pacific conference
on the topic of Bioethics Education held in Seoul, Republic ofKorea, last year, 26-28 July, 2006, adopted a Joint Plan of
Action for Regional Networking in Bioethics Education Towards
Better Bioethics Education (Seoul 2006)
The Rationale for bioethics education in this document
highlights the need for capacity building in bioethics at every
level of society and community in order to enable participants toexpress and discuss their values coherently in the bioethicaldiscourse and to enable the public to participate in making wise
decisions about their own, and their children’s, future. The
document outlines goals, challenges and recommendations andallows free and full scope for interpretation and implementation
at the local level in “culturally appropriate” ways. It encourages
educators and researchers to network in the preparation of
educational resources, and calls on parent institutions andgovernments to support the enterprise at every level.
One directive, however, immediately focuses the attention,
given the secular trends today. It reads thus: Societies andcommunities will progress in a more just, equitable andsustainable direction if the cultural, ethical, and spiritual valuesof these societies are central determinants in shaping
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technology and science, given that these are developing rapidly
today. The call to make cultural, ethical and spiritual values thecentral determinants in shaping technology and science iscertainly a challenge to educators. A framework is needed
within which this call can be realised in the educational setting,especially in the secular India of today.
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2. The Context
2.1. India: a secular democracy, land of many faiths andcultures
India is a land of many religious faiths. Besides being thebirthplace of Hinduism, Buddhism, Jainism, and Sikhism, India
has also been open to religions from other lands – Christianity,
Judaism, Islam, Zoroastrianism and, more recently, the Baha’ifaith. Truly, it can be said that India is home to many religious
traditions and that religion and spirituality are woven into thevery fabric of daily life. Children from their earliest years aresteeped in the tradition of the elders through myths retold andrituals re-enacted. The festivals of all religions, rich withsymbolism and mystery, are celebrated on a national scale andfestivals of the greatest significance to each religion are
declared as public holidays.
India is also a land of many cultures. Culture refers to thetotal, complex, expression of the spirit of a people and is acommunity’s way and view of life. It includes the group’s
relation to nature, the way they work and earn their living, themode and organisation of production, the mobilisation of thecommunity, their laws, traditions, festivals, language, arts,
artefacts, tools, ornaments. Beneath all these there is a selfunderstanding of the group, an interpretation of life, a worldview
and certain values and priorities which get expressed in popularsayings, stories, myths, and celebrations, in interpretations ofbirth, death and suffering. Cultures entail spirituality in thesense that they are people’s responses to the reality of humanneeds, possibilities, historical events as well to their implications
and promises. Culture is then the historically developed
expression of insights, values and needs, which characterises
the life of a community. Education is the process ofcritical/innovative transmission and reception of culture (Ryan,
2007).
Cultural pluralism refers to distinct cultures or sub-cultureswith distinctive individual and collective identities with an overarching civilisation unity. The basis of pluralism is wellestablished in the orthodoxy of ancient Indian tradition – Jaina
non-violence, Buddhist compassion, Upanishadic universalism
and Sufi-Bhakti mysticism. In Asia, plurality is so deeply andintricately woven into society that any attempt to homogenise it
would be suicidal. The way of coping with it ranges fromindifference and non-engagement all the way to affirmation andcelebration (Heredia, 2007).
At the political level, the preamble to the Constitution ofIndia reads: “We the PEOPLE OF INDIA have solemnly
resolved to constitute India into a Sovereign, Socialist, Secular,
Democratic Republic”. The word secular was not in the originalth
document, but was introduced as the 49 amendment in thecontext of inter-religion conflicts. Legislation-wise, religion is
one of India’s fundamental freedoms and the subject is taught,
in the secular educational context, as a study of Comparative
Religions. This approach favours education about religions as
distinct from religious education – an extremely importantdistinction, since the former re-enforces universalism while thelatter strengthens particularism (K.N. Panikkar, 2007). The
approach tends to favour an analytical, intellectual
understanding of other religions, rather than an intuitive
appreciation from the heart.
2.2. Bioethics, as it began … and the bioethical discourse
today
Bioethics, as a subject, was first introduced into U.S.
medical schools during the 60s and early 70s in the aftermath
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Eubios Journal of Asian and International Bioethics 17 (July 2007)of the following four events – the abortion debate, the shift fromcivil rights to medical rights with consequent legal implications,the emergence of scandals regarding the treatment of humansubjects, (the Tuskegee experiments and the Nuremberg code)
and, finally, the biotechnological revolution which resulted in the
Karen Quinlan case and the Seattle dialysis lottery. Today,
bioethics education courses have been designed in several
countries not only for medical schools, but for students at highschool and university levels as well. Teacher-training
programmes have a ripple effect which results in networking
and easily available web-based programmes. (Encyclopaedia of
Bioethics, 1st, 2nd, 3rd editions, 1978, 1995, 2004)
Initially, the subject was taught as Medical Ethics within atheological framework since it was hoped that this would have ahumanising influence on medical education. Over the years,
however, because of the specialisation that accompanies
modernisation, religion slowly became relegated to the realm of
the soul while science and politics were left to deal with that of
the body (Marty, 1992). Thus, philosophy gradually exiled
theology in the bioethical discourse, leading to the present-day
secular trends, so that Engelhardt (1999), reflecting on
Bioethics in the third millennium, stressed that “bioethics of the
future must learn how to live with robust moral diversity” andthat “bioethicists establish themselves as the equivalent ofsecular priests for our culture”. His view is based upon theconviction that no particular moral vision can provide theground for a moral consensus. In fact, the world in which welive today is so multicultural that most institutional if notinterpersonal interactions are governed by an ethics of “moral
strangers” (Engelhardt, 1996).
This type of secular bioethics, referred to as “moral
pluralism” or “melting pot” bioethics, is driven by normative anddescriptive ethics characterised by appeals to universalised
principles and morally thin sets of procedural guidelines rather
than by notions of teleology or the dignity of the human person.
Since the participants come from morally neutral backgrounds,
they meet as “moral strangers”, remaining in a safely protected,
yet totally separated, moral universe. The result is a neutralising
effect on the content of moral conversation, as such, so thatbioethics becomes merely a regulatory task diluting thedistinction between the legal and the moral. Normative ethics(criteria) results from consensual agreement in relation to therightness of the action prescribed, but the goodness of the ends
implicitly pursued by these actions, the kind of moral
personalities and moral societies they yield remain beyond thescope of ethics (Dell’Oro, 2007).
As a result of secularisation, not only is culture seen as
secular and multicultural, but those who hold religious beliefs
often voluntarily relegate religion to the private sphere, and tend
to understand their own beliefs according to these assumptions
as well. Furthermore, although they may have distinctive views,
these views don’t noticeably manifest themselves in distinctive
or significant “difference-making” ways. Thus, their voices
remain, effectively, unheard in the moral discourse. But, for the
one who believes, religion can make all the difference – at leastat the level of interpretation if not always at the level of action –and the contribution of these voices needs to be acknowledged(Hanson, 1998).
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3.
Religion and Spirituality … source of inner dynamism
for the believer
While a simple definition of the word religion would bebased on its derivation from the Latin re-ligare, which means tobind together, a more helpful description of models of religion
and religious doctrine developed by the theologian, George
Lindbeck (1984), is summarised here. The first modelemphasises the cognitive aspects of religious doctrines. Here,religion is understood primarily as a collection of beliefs, rites
and rituals, which a person chooses to adhere to or not. A

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second model focuses on the “experiential-expressive”
dimension of religion. Here religious teachings are interpreted
as “non-informative and non-discursive symbols of innerfeelings, attitudes or existential orientations”.
Still another approach is the “cultural-linguistic” alternativein which “a religion is viewed as a kind of cultural and/or
linguistic framework or medium that shapes the entirety of life
and thought. It is not primarily an array of beliefs about the true
and the good (though it may involve these), or a symbolism
expressive of basic attitudes, feelings, or sentiments (thoughthese will be generated). Rather, it is similar to an idiom thatmakes possible the description of realities, the formulation ofbeliefs and the experiencing of inner attitudes, feelings andsentiments.”
Although this model accommodates the cognitive aspects,
religious doctrines are not merely a set of teachings to bebelieved. Rather, they are a medium and set of skills by which
one learns to live one’s life. Furthermore, there is a dialectical
relation between religious doctrine and experience. Religious
narratives combine with religious experience to provide a
structure for an entire way of life for religious believers and thecommunity. Religion is viewed as both a source of meaning for
beliefs and experiences as well as an embodiment of ways ofliving that testify to religious truth.
The uniqueness of religion, however, lies in its link to theTranscendent – referred to in the Indian tradition as The One
Beyond All Name and Form – the Absolute, the principle onwhich everything depends, the cause of which the whole worldis merely an effect, the essence of which existence is merely aphenomenon. Since the Absolute is both transcendent andimmanent, there is no way to express this adequately in humanlanguage and so this “something else” is frequently designatedin the Upanishads by the simple pronoun tad (That).
Religion, understood in terms of the last model describedabove, comes very close to an understanding of spirituality,
which is derived from the Latin word spiritualitas, meaning
breath, and is generally considered to be a broader concept
than religion.
Tanyi (2002), after analysing 76 articles and 19 books,
defined spirituality in the following manner. “Spirituality is apersonal search for meaning and purpose in life, which may or
may not be related to religion. It entails connection to selfchosen and/or religious beliefs, values and practices that givemeaning to life, thereby inspiring and motivating individuals toachieve their optimal being. This connection brings faith, hope,peace and empowerment. The results are joy, forgiveness of
oneself and others, awareness and acceptance of hardship andmortality, a heightened sense of physical and emotional wellbeing and the ability to transcend beyond the infirmities ofexistence.”
Sulmasy (2006) refers to the quality of transcendental
relationship in his definition… “One’s spirituality may be defined
simply as the characteristics and qualities of one’s relationshipwith the transcendent”, while Martsolf and Mickley (1998)
include a sense of “becoming” or an unfolding of life that calls
for reflection and experience, including a sense of who one “is”
and how one knows.
3.1. Religion and Spirituality: source of moral attitudes
and values
When religion and spirituality are truly lived experiences,the participants in a moral discourse can be expected to bringto the table attitudes and values born of their experience,awareness and appreciation of a “transcendent dimension” tolife beyond self. Chief among these will be an increased
awarenessofconnectedness
withoneself,
others,
God/Spirit/Divinity and nature/Nature. The ability to derive
purpose and meaning from life will result in an intuitive
approach to situations as being morally relevant or not.

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Eubios Journal of Asian and International Bioethics 17 (July 2007)

Experience and capacity for reflection will make for a listening
heart and wisdom in dialogue and decision-making.
The attitudes (virtues in the Aristotelian sense) ofattentiveness, truthfulness, respect, and responsibility on
personal, shared and social levels are experienced anddeveloped as a result of fundamental life-options. So, too, arethe feelings of empathy, compassion and concern for the other.
Stemming from personal spirituality, they belong to the innercore of the person and enable one to choose and do the rightthing. Attitudes are formed from an early age because of theinfluence of religion, culture and tradition and are the driving
power of the bioethical reflection.
Values, likewise, are learned from the earliest years. They
represent the importance, or significance, which a person
attaches to a choice (or action) as good, worthwhile ordesirable. Determined by the prevailing social and cultural
norms, they can be fundamental or personal. Values include,
among others, justice, trust, confidentiality, support, and, forsome groups, community and autonomy. Together withattitudes and virtues, values represent the initial moral
experience from which individuals can draw and, also, on which
they can build.
Attitudes spring from religion and personal spirituality andcan be considered to form the “spiritual” pillar on which thebioethical discourse rests; values are the result of interaction
within a family, community or social group and form the“hermeneutical” pillar of the discourse. Each participant comeswith a personal richness of experience, attitudes, values andemotions. Each voice needs to be heard so that the final
decision may be wise and for the good of the whole.
In India, the multi-religious traditions constitute a rich field
for dialectical dialogue and for the retrieval of bioethicalprinciples and values. Thus, in Hinduism, the concept of
eikinata (one-centredness – a distinct way of seeing andorienting oneself to the world) creates space for educating to
ethical values of human dignity, equality, solidarity, sharing.
The use of “one-centredness” in orientating oneself to the worldengenders a drive towards unity, the unity of seeing themultiplicity of being as arising from a single Source, being
sustained and interrelated through that source and seeking thatsource as the ultimate goal (Lipner, 2007).
Some other basic attitudes towards life, like dharma (theright way of living), sarvam dhukham (the all-pervasiveness of
pain and evil), maanaha (respect for all forms of life), karma(cause and effect of one’s actions), the cycle of life and deathand moksha (liberation) form part of the most elementary
religious instruction and one is aware of them from a very
young age.
When participants at the table are able to draw from boththe spiritual and the hermeneutical dimensions of their
particular experiences and traditions, the richness of the
discourse is enhanced, especially if their contributions arereceived in an open spirit of dialogue (Liégeois, 2006). Theinteraction leads to a more comprehensive understanding of themoral problem from several different points of view and a planof action with a more holistic outcome.
3.2. The initial moral experience of the student is finetuned through education
To enable fruitful and wholesome participation in the
discourse, education in several areas is needed. Of prime
importance are the cognitive goals of theoretical andconceptual knowledge, analytical abilities to recognise andmanage ethical issues, and the skills of ethical reasoning. Other
cognitive goals are increased sensitivity and awareness ofvalues, and critical reflection on already-held personal values.
Practical areas include helping to bridge the gap between
ethical theory and principles and actual ethical reasoning inpractice. At the level of attitudes, promoting a humanistic

attitude and emotional qualities through a personal reflection on
one’s own behaviour and an increased capacity for tolerance
and acceptance of diversity (Myser, 1998).
The bioethics educational process is geared to fine-tuning
the skills of students in ethical analysis and self-reflection. An
increased awareness and appreciation of one’s own personal
attitudes, values and emotions, and the sources from which
they spring, leads to a deeper appreciation of the attitudes,
values and emotions of others. It also helps to develop
openness and receptivity of heart in a non-threatening
atmosphere where dialogue and healthy challenge arepossible.
The observation that learning happens through doing has
particular import for moral development and education. What
we learn through behaviour influences later behavioural choices
that, in their turn, will have an impact upon learning once again.
The recursive process of human understanding continuously
turns back upon itself to construct a truly human reality in which
the agent is both participant and observer (Selling, 1999).
4. Bioethics Education
4.1. Lessons from four decades of experience
A brief review of the medical ethics education scenario
over the last four decades can provide useful lessons for ourown journey. Though the ongoing quest has been for relevancein terms of objectives, methodology, assessment andevaluation, and efforts have been made to develop the humanside of students through encouraging the use of narratives androle models among the staff (Cattorini, 1994; Gross, 2001;
Wellbery, 2006), the humanising influence on medical
education, which was the main reason for starting bioethics
courses, does not seem to have been achieved (Cooper, 2005).
Students seem unable to translate their knowledge into action,and the introspection required for true behavioural change does
not appear to have been fostered (Bertolami, 2006). I would liketo dwell on three points that I feel are important.
The first refers to an ever-present danger that students
tend to pick up ethical jargon just like they learn science andfeel they know the subject because they can apply moral
vocabulary more or less appropriately to cases. This needs tobe counteracted by using familiar ethical concepts of ordinary
language starting from the student’s personal moral experience(Cowley, 2005).
A second is that bioethics education must be characterisedby an open pluralism if it is to be effective. This means acommitment to explore, understand, and hear the voices ofevery moral community constituting a respective culture. “Open”
pluralism is not to be confused with the “melting-pot” pluralism
referred to earlier. On the contrary, “open” pluralism
acknowledges that all parties involved in the conversation findthemselves living within one or more particular moral traditions
and would be open to what they have to say to each other(Kinghorn, 2007).
The third and most important lesson, however, is thatbioethics education leads to an overemphasis on rationality
while what is needed for true bioethical maturity is an intuitive
intelligence of the heart (Coulehan, 2005). This implies thatbioethics education does not seem to help in developing moral
sensitivity; students lack empathy and moral perception and are
unable to respond to morally demanding situations withcompassion and understanding.
If this is true, then (whatever be the reasons) the main
objectives of bioethics education, which are the ability torecognise ethical issues, an increased sensitivity andawareness of values, a critical reflection on already-held
personal values and openness to the values of others –remains unfulfilled.
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Eubios Journal of Asian and International Bioethics 17 (July 2007)
4.2. Perception - ability to “see” the moral landscape – isthe first stepThough several remedies for the apparent lack of successof bioethics education programmes have been suggested over
the years, I would like to dwell on a point made by James Rest
(1982, 1999) who notes that moral behaviour involves morethan thinking about conflicts: one must first recognize that a
conflict exists. Vision, or moral perception, is, thus, an important
aspect of moral development. It refers to an increasing ability to
see the moral landscape clearly … an ability which involves theemotions, particularly the feeling of empathy. In fact, moral
growth, development and functioning are the result of acomplex web of cognitive, behavioural and affective forces thatcan be represented by the following four component processes:
1. Moral sensitivity or perception (ability to see that a moral
problem exists)
2. Moral judgment (ability to judge what action would bejustifiable in a moral sense)
3. Moral motivation (commitment; taking personal
responsibility for moral outcomes)
4. Moral character (persistence in a moral task; courage,
ability to overcome fatigue).
Failure to behave morally can result from deficiencies inany of the four components. For example, if a person isinsensitive or if a situation is too ambiguous, the person may
fail to act morally (deficiency in Component I). Or a person may
be deficient in formulating a moral course of action or may
employ simplistic and inadequate moral reasoning (Component
II). Or moral values may be compromised or pre-empted byother values (Component III). Or it may be that a person has
decided upon a moral course of action, but loses sight of thegoal, is distracted, or just wears out (Component IV). While it is
not possible to discuss these components in detail here, theyremain important as a backdrop in bioethics education.
My personal experience is that when early moral
development has been awakened and sustained in basic faithcommunities, and is not mere lip service, students are moresensitive to situations. The moral judgments they make arebased more often on universal principles of justice and fairness
rather than merely on personal interests or on satisfying norms.
They are better able to renew their initial motivation after asetback and take personal responsibility for the decisions they
make. They also have greater persistence and an internal
dynamism, which helps to overcome fatigue. Education plays
an important role in this process since educators must
concentrate on those components that need formation, so that
ethical maturity can be achieved.
Evaluating bioethics courses or student progress throughthe traditional methods of exams, papers and classroom
performances also lacks validity, though awareness of thecomplexity and overlap between the four components is an
initial step towards improvement.
More interaction withpsychologists is suggested to overcome some of these
difficulties. So far the collaboration has been mainly between
ethics instructors and philosophers; however, when thedisciplines of philosophy and psychology have worked together,both theory and practice have benefited (Bebeau, 2002).

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Schematically, Vetlesen represents moral performance as
spanning three levels, thus:
PERCEPTION
Faculties

Application of
Principles,
Norms

JUDGMENT
cognitive-emotional

Empathy
Sees the situation as
morally relevantin the first place

ACTION
cognitive-emotional

Intelligenceofthe heart

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4.3. Empathy – an emotion, basic to moral performance
In his treatise, Perception, Empathy and Judgment – Aninquiry into the preconditions of moral performance, philosopher
Arne Johan Vetlesen (1994) argues for a re-instatement of theemotional faculties, especially that of empathy, into the realm of
moral judgment and moral performance. His view is that thecognitive dimension has been overstressed in moral theory (i.e.
actions done out of duty being considered “truly moral”, as
distinct from actions springing from inclination) whereas, in fact,
it is the emotions that are the first element in perception.

The sequence of moral performance is set in motion by anact of moral perception that provides and shapes the setting formoral judgment and moral action. The cognitive, (or rationality)
element determines the principles and norms for judgment andaction and how “best” to weigh and apply them in a particularsituation. But intellectual knowledge is useless if one is notsensitive to “see” the situation as morally relevant, i.e. one
calling for moral judgment and moral action, in the first place.
In order to truly be anchored to the weal and woe of others,
here and now, the emotions – or more accurately, the faculty of
empathy – are indispensable in providing first access to thedomain of the moral, understood (in a wide sense) to include
every “other” who is an object of respect and concern.
Emotions, it must be remembered, are not irrational forces ormorally neutral entities. As Nussbaum (2001) reminds us,
people reveal what and who they are by the things that movethem. Emotions, thus, always reflect a specific cultural context
in which particular things are viewed as valuable or good.
Emotions imply an object, are intentional by nature, embody
certain beliefs about the object and are concerned with values.
4.4. Education for Empathy“Moral perception”, emphasises Vetlesen, “does not startfrom scratch.” It is guided, channelled and developed throughparticipation in morally sensitive communities and depends
primarily on the socialisation experiences of love and concern inearly childhood. Most children, except the severely emotionallydeprived, have a natural ability to sense and feel the weal andwoe of others.
Religion and spirituality are powerful motivating factors in
the development of the emotion of empathy. Relationship with
the Transcendent Absolute sensitises a person to the transitory
nature of life and the pain inherent in the human situation. It
deepens one’s realisation of the unity of all creation and opens
the mind and heart to feel the anxiety and distress of “the other”
as one’s own. Religion and spirituality also help in reflection,
which is crucial to moral vision. This consists partly in seeing“into” oneself, paying attention to nagging doubts, articulating
feelings; it requires time and quiet (Andre, 1992).
Enabling the quality of “intelligence of the heart” is adifficult, but not impossible, task for educators. Recognising andfostering the natural ability where it already exists is one way ofhelping students grow in empathy. Others include techniques
like role-playing, sustained practice in imagining, portfolio
keeping, the use of stories and developing a sense of wonder(Spiro 1992; Cole-Kelly 2006; Leget 2007). Success ineducating for empathy lies in patient and continuing efforts atusing differing learning environments, and education throughexample – i.e. teachers becoming role models.
However, the capacity for empathy is exceedingly
vulnerable to societal manipulation and can easily be blockedby predetermined ideologies, technologies or bureaucracy. Rekindling the emotional fire of empathy in these cases will be thefirst Herculean task for bioethics educators, since the basic

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Eubios Journal of Asian and International Bioethics 17 (July 2007)

requirement for perceiving a situation as morally relevant ismissing.
Finally, we must remember that empathy, considered as
an art that encompasses both internal and external emotion
management, cannot be achieved simply through explicit
teaching (Larson, 2005). Rather, it requires a slow educational
immersion process that can be likened to the maturing of a fine
wine and its unfolding involves a response to changing targets
and situations (Pence 1983). Enabling emotional maturity is
one of the greatest challenges for bioethics educators.
Ultimately, the real test of bioethics education lies in themanner in which students approach moral situations theyencounter in daily life, their ability to recognise the inherent
moral problems, to empathise, make wise and appropriate
moral judgments, and act with courage and persistence.
5. Deliberation: a philosophical framework for bioethics
education
Van Tongeren (1988) reminds us that, as a branch ofphilosophy, ethics proceeds from empirical knowledge, namely,
a person’s moral experience. The moral dimension of the world
is first and foremost experienced; moral experience ishumanity’s way of understanding itself in moral terms. Bioethics
is thus the interpretation and explanation of this primordial
understanding and relates to the hermeneutics of moral
experience. “Before acting morally we must already know, atleast to some extent, what is morally desirable or right.
Otherwise, we would not recognise what is appealing in a moral
sense. On the other hand, what we recognise in our experience
is typically unclear and in need of further elucidation andinterpretation” (Henk ten Have, 2005).
In this final section, I would like to explore a framework forbioethics education which starts with the moral experience ofthe student. Many methodologies have been proposed over theyears to manage and resolve ethical problems, some of thembased on decision-making theory and others based on
philosophical traditions like principlism, casuistry, narrativism,
hermeneutics, and pragmatism. Gracia (2003) defends the viewthat deliberation is the cornerstone of any adequate
methodology. This is because moral decisions must take into
account not only principles and ideas, but also emotions, values
and beliefs.
Deliberation is defined as a process in which every person
concerned by the decision is considered a valid moral agent,obliged to give reasons for their own points of view and to listen
to the reasons of others. The premise is that a right answer
does not exist in advance, that bioethical analysis consists insearching together for this answer. Deliberation attempts toanalyse problems in all their complexity, weighing up theprinciples and values involved as well as the circumstances andconsequences of each case so that all, or at least most, of thepossible courses of action can be determined.
“Our moral decisions cannot be completely rational, due tothe fact that they are influenced by feelings, values, beliefs, etc.
but they must be reasonable, that is, wise and prudent.
Deliberation is the main procedure to reach this goal. It obliges
us to take others into account, respecting their different beliefs
and values and prompting them to give reasons for their own
points of view.”
Deliberation, therefore, requires, among several otherprocedural steps, careful listening in a spirit of open pluralism
which acknowledges that all participants in the discourse comefrom moral traditions that have a contribution to make; that all
are open to what the others have to say so that the best andwisest course of action results under the circumstances. Of
course, the outcome is always open to fresh input and may bechanged in future if necessary.

The process of shared decision-making can be illustrated
schematically as follows (Liégeois, 2006):(Spiritual pillar) ATTITUDES
Subject

VALUES (Hermeneutic pillar)
ObjectContext
DIALOGUE(Relational pillar)

ACTIONAs we have seen earlier, Attitudes and Values refer to thepersonal attributes, which participants bring to the moral
discourse, and they constitute two of the pillars (spiritual andhermeneutic) on which the particular context under deliberation
rests.
Dialogue is the third and most important pillar of thedeliberation process. It is the relational pillar requiring
attentiveness, listening, openness, and the ability to express
intuitions and evaluate responses in a non-threatening manner.
The dialogic aspect of deliberation requires understanding of
bioethical principles and theories as well as skills in both themethods of bioethical analysis and in communication. It is
refined through the educational process and is best learned,
experienced and practised in a relational environment.
For philosopher-theologian, Raimundo Pannikar (1983),
dialogue is a way of being – a most fundamental condition ofexistence. “Dialectics”, he says, “is the optimism of reason,
while Dialogue is the optimism of the heart”. Possible at the fourlevels of life, action, religious experience and theologicalexchange, dialogue is an art that must be learned, as it isessential to the process of deliberation. While the fourth level iswhere specialists seek to deepen their understanding of theirrespective religious heritages, students can certainly be taught
to dialogue at the first three levels of life, action and religious
experience; at this third level, rooted in their own religious
traditions, they share of their spiritual riches.
Faced with moral questions in a bioethics discourse,
students must be encouraged to listen attentively to allparticipants at the table and be allowed to respond from theirpersonal religious and cultural experiences. They need to share
their moral insights, feelings, attitudes and values, and thesources from which these are derived. They must also betaught to reflect on their own responses and those of others
and to give and receive feedback in a spirit of openness. This
will help to develop the skills required for dialogue and makethe process of bioethical deliberation more natural.
Formal bioethics education must, of course, include a
central place for developing the capacity for moral
argumentation, for analysing the quality of arguments, forpointing out inferential mistakes, inconsistencies and illegitimate
generalisations, while not omitting conceptual analysis (Cowley,2005). However, educators need to be aware of their primarytask, which is to develop in students an “intelligence of theheart.”
Thus, bioethics education involves formation of participantsin the moral discourse in certain basic methodologies so thatthey are capable of perceiving and understanding theEubios Journal of Asian and International Bioethics 17 (July 2007)
complexity of the moral problems involved; persons who can
ask the right questions and provide wise and reflective
responses; finally, persons with a sense of responsibility for
their part in the deliberative process. The approach has to beholistic involving persons in their totality, in their physical,
cognitive, affective and spiritual dimensions and, also, in
relationship with their own inner self, with others (both asindividuals and in the larger society) and with the transcendent.
This holistic approach will respect the dynamic by which
students arrive at moral decisions, while providing guidanceand support through timely and appropriate interventions.
Discussion
This paper set out to reflect on the specific role of religion
and spirituality in bioethics education in India today, in thecontext of the UNESCO Joint Plan of Action for Regional
Networking in Bioethics Education - Towards Better Bioethics
Education, asking what specifically these values could bring to
the table of moral discourse in a multi-cultural, multi-religious,
secular democracy like India.
Although India is secular in its constitution, and religion
and spirituality are not normative, the religious and spiritual
influence of the home and family are foundational experiences.
Attitudes and values are formed from an early age because of
the influence of religion, culture and tradition. Since they form
two basic pillars (religious and hermeneutical) of the bioethics
deliberation process, religion and spirituality have an importantrole in bioethics education.
Another important function of religion and spirituality is in
the development of the emotions, especially the affective
faculty of empathy, which is the basic faculty by which asituation is intuited as being morally relevant. Where theexperiences and influences are positive, the possibility offorming morally sensitive persons, capable of thinking with theheart, is increased. However, these capacities are extremely
sensitive to manipulation and can be stunted or blocked, evenwhen the initial experiences are positive. Hence, a caring
educational environment is important.
Dialogue is the third, and most important, relational pillar ofthe deliberative process. Besides knowledge and skills, it
requires connectedness to oneself, to others and with theTranscendent. Continued practice and role models help tosustain motivation.
Conclusion
India is at the threshold of making her experience in thearea of bioethics education. Two medical schools – St. John’s
Catholic Medical College in Bangalore (Ravindran et al, 1996)
and Christian Medical College, Vellore, (Selvakumar et al,2004) have organised medical ethics programmes forgraduates and residents. But ethical values are presently taught
in schools, integrated with different subjects (Bhardwaj &Macer, 1999).
We have the advantage of being able to learn from theexperience of others. Does this mean that the process will be
more successful? We can only try. If our starting point, at leastin education, is values and attitudes, rather than norms andlaws; teleological, rather than deontological; dialogue andrelation-based, rather than principles-based; students will learn
how to bring their viewpoints to the table of moral discourse in
an atmosphere of tolerance in the deepest sense of that word.
The education process will also forestall entry into the bioethicaldiscourse from a point of neutrality and help participants in the
moral discourse not to meet as complete moral strangers.
However, our milieu is multi-cultural, multi-religious andmulti-dimensional at the educational level so the task is indeed
challenging. In India, religion and spirituality are the stuff of life
and the ethical dimension can be seen in the definition of103

Bioethics is love of life (Macer, 1998) which is a very coherent
attitude.
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Principles for Public Health
Ethics – A Transcultural
Approach- Peter Schröder-Bäck, PhD
Institute of Public Health NRW, Westerfeldstr. 35/37, D- 33611
Bielefeld, Germany,
Email: peter.schroeder@loegd.nrw.de
1. Introduction
The last century has brought about a renaissance of
medical ethics, transformed to bioethics due to a wider range of
ethical challenges in medicine transcending the traditional
physician-patient relationship. Ethical discussions of issues
related to health – from the status of the embryo to access tothe health care system up to questions of physician-assisted
suicide – have since mainly been framed under the heading of“bioethics”. But hardly any ethical discussions concerning the
public’s health have been led. In continental Europe, forexample, little effort is being made to establish an explicit ethics
framework for public health – although systematic ethicalapproaches for public health are needed as the immanent
conflicts between the social good and individual rights are andbecome more and more obvious e.g. in the context of athreatening influenza pandemic caused by a new human
influenza virus subtype.
This paper underlines the need for a public health ethics
framework. I will argue that such a framework has to benormatively set apart from bioethics. Yet, to work with a concise
set of mid-level principles and to utilize the well establishedmethods of applied ethics – such as balancing and specification– will also prove well in public health ethics. This is what we canlearn from the experiences in bioethics.

2. From Influenza to HTA – Ethical challenges in publichealthInfectious diseases count among the major global healththreats. Although vast ethical challenges are associated withthese diseases, bioethics has neglected to deal with ethicalaspects of infectious diseases and population health. Selgelid
observes a “10/90 divide” which means that only 10% of allbioethics work deals with what constitutes 90% of all healthburden – namely infectious diseases. 1
Nowadays we are facing a possible influenza pandemic
caused by a new human influenza virus subtype. Thus there isneed for ethical debates on infectious disease control to inform
policy making processes in this field. The bioterrorist threats,
especially after September 11th 2001, and the SARS outbreakin Toronto in 2003 have stimulated a systematic discussion of aneed for public health ethics and infectious disease control.
Ethical aspects like finding the balance between protecting the
public and restricting individual liberties are issues in these
discussions. Especially the lessons from Toronto show that it isnecessary to deal with ethical aspects of pandemic influenza
preparedness as early as possible. Ethically sound and morally
acceptable approaches for influenza preparedness plans
should be founded in these discussions. In order to develop
and to maintain public trust and cooperation, transparent andethically justified regulations have to be discussed prior to adilemma situation as part of preparedness planning. 2
Other ethical challenges appear in public health. Amongthem are questions of how to conduct good epidemiologicalresearch (e.g. with vulnerable populations), which healthinequalities are justified and which are morally devastating,whether to implement compulsory health programs (such as
measles vaccination or screenings for some diseases), whether
manipulative health education might be permissible, whether
smoking should be banned from public places, how to balance
the conflict between an anticipated health benefit of a publichealth campaign that might stigmatize some subpopulations(e.g. campaigns against high infant mortality among migrants)
etc. 3 Also Health Technology Assessment (HTA), a procedure
applied in public health to anticipate the impact of innovative
tools and approaches in health, considers ethical aspects andimplications. But a lack of systematic ethical approaches for
HTA can be observed.
How can we approach these challenges? Normative
theories in ethics and applied ethics are supposed to tell us
how to act – or at least to give us criteria with which we canjudge the moral implications of a motive or act. To arrive at
norms in the context of these health challenges, we might firstturn to the Hippocratic ethic to see if this traditional medical
code with its norms can be a valid normative source for publichealth as well.
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3. Do medical ethics and bioethics know the answers?
In medicine the Hippocratic Oath was an influential
document that told the doctor to do good to his patient and to
avoid harm. But the oath left the decision of what was good orharm to the judgement of the doctor – not the patient. Thus it isno surprise, says Veatch, that with progress in medicine andbiotechnology that gave more leeway with regard to treatments(or with refraining from those) the Hippocratic ethic had to be
overthrown: “The Hippocratic ethic will be relegated to the ash
1Selgelid MJ (2006) Ethics and Infectious Disease. Selgelid MJ, Battin
MP, Smith CB (Ed.) Ethics and Infectious Disease. Malden: Blackwell
Publishing: 3-19.
2Childress J (2005) Just Care: Rationing in a Public Health Crisis.
Update 20: 1-7.
3
See for a number of case studies Coughlin StS, Soskolne CL,
Goodman KW (Ed.) (1997) Case Studies in Public Health Ethics.
Washington: American Public Health Association.
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Eubios Journal of Asian and International Bioethics 17 (July 2007)
heap of history – a benevolently paternalistic morality that may
have worked for a culture in which patients were patient – when
they were (as the word patient implies) passive, long-suffering,
ignorant, and believed to be incapable of making choices.” 4 As
a consequence, bioethics entered the scene – most famously
comprised in the four-principles-approach by Tom Beauchamp
and Jim Childress. 5 They added the benchmark “respect forautonomy” to the Hippocratic principles “do good” (beneficence)and “avoid harm” (non-maleficence) that provides the core of
their personal ethics principles for the patient-physician
encounter. Yet, with technological progress and necessary
decisions in situations of scarcity that appeared (e.g. doctors
had more patients that needed dialysis than they could bring tothis renal substitution therapy), the perspective had to be
widened. Bioethics had to find answers to social challenges ofbiomedical progress and scarcity. Thus Beauchamp andChildress added the core principle of social ethics, i.e. justice,and gave some criteria for the good and right distribution of
scarce resources.
Does the bioethics paradigm with its basic focus on
personal ethics provide a sufficient framework for public healthethics? Probably not – as bioethics focused on individual good
and autonomy and hardly ever thought about population
health. 6 As such it is no wonder that bioethics has seldom dealt
with infectious diseases and possible population health
implications. At least in continental Europe and especially theGerman speaking realm, there are seldom public healthscientists engaged in ethical discourse. Some papers mapping
the terrain of public health issues actually only impose bioethics
principles and methods on public health, calling this publichealth ethics. 7 But the focus on normative concepts of publichealth ethics is different from bioethics as the moral enterpriseof public health is different from that of biomedicine. They bothbelong to different scientific and practical paradigms andscientific communities with different goals. These paradigms
are neither incompatible nor incommensurable. Yet they arecomplementary and have different moral foundations and tasks;
and they need different normative orientation.
Accordingly, there is a conceptual flaw to use bioethics
for a primary ethical orientation of a population perspective inpublic health ethics and it is consequently inappropriate tofocus on bioethics principles. Public health ethics has toemancipate from bioethics – theoretically – to sharpen its focus,
taking into account the goals, approaches and competences ofpublic health, and – practically – to enter discourses andcommunities of public health sciences and public health policy
makers. Yet, an account to public health ethics based onprinciples seems a fruitful practical approach, as thepracticability of the bioethics principles to the practitioners ofbiomedicine has proven well in the last 30 years and thus
serves as an analogous example of good practice in applied
ethics.
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the Ethical Practice of Public Health “ 8 . They appear as rules,
rather than principles as they themselves have called thembecause they express principles like respect for autonomy,social utility and so on but already in a specified form.
“Specified” means that these principles are already branchedout by considering each other. Take for example the second
rule: “Public health should achieve community health in a waythat respects the rights of individuals in the community.“ Toachieve community health means to achieve “good” for thegroup which is close to the principle of social utility. The phrase“respect the rights of individuals” mirrors what can be
expressed in short with “respect for autonomy” (or one could
argue “justice“ as they talk of “individuals” in the plural).
The twelve rules of the PHLS do have a good value; they
provide a very detailed and lengthy instrument. But thesetwelve rules are no principles as we would understandprinciples in applied ethics. The set of their rules is detailed andnot so much generalized and comprehensive as the four
principles are in the context of bioethics. Yet, that it is thisconcise set of four bioethical principles that became so famousand proved well in the context of bioethics is more than apragmatic reason to use prima facie mid-level principles to build
an ethical corridor or framework for public health as well. I
believe that it is still true what the Belmont Report (for which
Tom Beauchamp was staff writer) demanded for a practical
approach: Rules of codes of professional conduct are often“inadequate to cover complex situations; at times they comeinto conflict, and they are frequently difficult to interpret or
apply. Broader ethical principles will provide a basis on which
specific rules may be formulated, criticized and interpreted.“ 9Against this quote, the “Principles of the Ethical Practice of
Public Health“ of the Public Health Leadership Society appear
like a code that consists of rules.
A concise set of broad ethical mid-level principles that areformulated and theorized by ethicists (maybe embedded ininterdisciplinary working groups) seem to be useful tools forpractitioners to use. A concise set of prima facie principles anda manual of ethical methods how to use them is like a baton
passed on from ethical theorists to practitioners.
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Social Utility: “Social utility” is for public health what
“Beneficence” is for (bio-)medical practice. Both enterprises –public health and (bio-)medicine – try to generate the good, in
this case health. Whereas “beneficence” is traditionally theprinciple of personal ethics to describe a moral duty of thephysician, “social utility” is a principle of social ethics. The net-

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4.2 Benchmarks to consider – An “ethical toolbox” for publichealth researchers and practitioners
Thus, in this paper, a concise set of broad central norms– analogue to the four bioethics principles – shall be offered asa public health ethics framework for discussion. The principles
that are – in my opinion – adequate to serve as generalized
norms as a public health ethics framework are social utility,
respect for human dignity, social justice, efficiency andproportionality (see table 1). With five principles this is still a
concise set. Passed on as an “ethical toolbox” from thetoolmakers (the ethicists) to the public health practitioners andscientists, they are benchmarks for good and right public healthresearch and practice. They are norms public healthpractitioners and researchers should follow by bringing them ina balance and/ or specifying them to more concrete moral rules
and judgments to apply in particular contexts.

4

Veatch, R. (2000): Doctor Does Not Know Best: Why in the New
Century Physicians Must Stop Trying to Benefit Patients, J. Medicine
and Philosophy 25, 701-721. p. 702.
5
Beauchamp TL, Childress JF (2001) Principles of biomedical ethics, 5.
edition. Oxford University Press, New York.
6
Callahan, Daniel; Jennings, Bruce (2002): Ethics and Public Health:Forging a Strong Relationship. AJPH 92: 169-176.
7
Schröder P (2007) Public-Health-Ethik in Abgrenzung zur Medizinethik.
Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz
50: 103-111.

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4. A concise set of ethical principles for public healthpractice
4.1 Why a concise set of principles?
The Public Health Leadership Society (PHLS) has
provided a set of twelve rules under the heading “Principles of

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8
Public Health Leadership Society (2002) Principles of the Ethical
Practice of Public Health. Version 2.2.[www.phls.org].
9
The National Commission for the Protection of Human Subjects ofBiomedical and Behavioral Research (1978) The Belmont Report.
Ethical Principles and Guidelines for the Protection of Human Subjects
of Research. Washington, DC.
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Eubios Journal of Asian and International Bioethics 17 (July 2007)106

benefit of “social utility” is to be sought in the whole of the
population or group that is at stake. Some people in publichealth, such as Mackenbach 10 , believe that “social utility” is at
the heart of public health and many public health practitioners
are virtuous persons that came into public health to bring about
as much health as possible. Others, such as Miettinen 11 , eveninsist that there cannot be any other moral norm than social
utility to guide the practice of public health, which is a position I
challenge.
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justified and which are morally unacceptable. In other words:“Under conditions in which various socially situated groupsinteract with one another under conditions of inequality, what
inequalities matter the most?“ 16 An account of justice thatgrounds on sound criteria can help to identify what has to bedone that all persons can live decent lives.
Social justice is the norm that tries to keep public healthfrom discrimination, stigmatization and exclusion, it promotes
fair treatment for those who have less chances for health andless chances to lead a full and flourishing life 17 – no matter if
the overall net-benefit significantly rises or not while supporting
this population.
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Individual Level

Moral
Aim: Moral
Aim:
Maximizing
good Respecting rights
consequences(deontological)(consequentalistic /teleological)•

Social Level•••

Respect
Human
Dignityfor

Proportionality•

Social Utility
Efficiency

SocialJustice

Table 1: Principles for public health ethics assigned to ethicalcategories.
Source: Self-study drawing on a scheme developed by Robert
Veatch 12
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Social Justice: “Social Justice” is another side constraint tosocial utility. It not only matters to better the net-benefit. It also
matters how the benefits and burdens are distributed. 15 At theheart of public health research there are questions of healthinequalities. Yet, it is not a priori clear what inequalities are
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10
Mackenbach J (2005) Kos, Dresden, Utopia … A Journey throughidealism past and present in public health. European Journal of
Epidemiology 20: 817-826.
11
Miettinen OS (2005) Idealism and ethics of public-health practitioners.
European Journal of Epidemiology 20, 805-807
12Veatch R (2000) Theory of Action (Principles Summarizing
Obligations and Rights.) Washington: (Handout).
13
Geier M, Schröder P (2002) The Concept of Human Dignity inBiomedical Law. In: Sándor J, den Exter, AP (Ed.): Frontiers of theEuropean Health Care Law: A Multidisciplinary Approach. Erasmus
University Press, Rotterdam, 146-182.
14
Nozick R (1974) Anarchy, State, and Utopia. Basic Books, New York.
15
Powers M, Faden R (2006) Social Justice: The Moral Foundations of
Public Health and Health Policy. Oxford University Press, Oxford.
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Efficiency: When distributing goods – to either raise the netbenefit and bringing health to all or when supporting the mostdisadvantaged – “efficiency” becomes an essential principlethat needs to be included in the concise set of mid-level
principles for public health ethics. Although it seems to only
support social utility or social justice by guiding these to spend
resources responsibly, it has to be a principle at the forefront ofpublic health practice. (It would be “effectiveness” that wasmore identical with “social utility” and “efficacy” that was closer
to “beneficence” – hence, “efficiency” is complementary to“social utility”).
Literally all public health systems worldwide lackresources. Thus to use the scarce resources efficiently is a
moral duty because in this way more good to more people –including disadvantaged persons – can be achieved. The
principle “efficiency” would thus demand in public health, e.g.,
to use evidence-based public health measures and to
implement cost-benefit-analysis. It should be included in the
concise set of ethical principles to always and prominently
reassure public health practitioners and researchers that it isalso a moral duty to be efficient.

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Respect for Human Dignity: If we only focused on “social utility”
as a moral norm to abide by in public health practice andresearch, this might have devastating consequences. It would
then be allowed to instrumentalize or sacrifice individuals (orwhole groups) if only this provided a greater net-benefit.
Although in extreme cases it might be ethically permissible torestrict individual liberty – e.g. when a contagious person with adeadly disease who resists to voluntarily going into isolation isforced into isolation or is not allowed to use an airplane –“respect for human dignity” reminds us of our duty not tosacrifice or instrumentalize individuals and to respect their free
wills. Although “human dignity” is difficult to define 13 , it has
become a transcultural value and should prima facie be
considered to be a “side constraint” 14 to “social utility”.

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Proportionality: The fifth ethical principle demands that whenweighing and balancing individual freedoms against the social
good this shall be done under the principle of proportionality. In
the words of Childress et al. proportionality “is essential to showthat the probable public health benefits outweigh the infringed
general moral considerations […]. For instance, the policy may
breach autonomy or privacy and have undesirable
consequences. All of the positive features and benefits must bebalanced against the negative features and effects.“ 18 But
proportionality is also a principle that comes to the forefront ofpublic health ethics principles by casuistic reasoning:Experiences of the SARS outbreak, which has revived publichealth ethics enterprises, draw the attention to this principle. If
these experiences were not made in the case of the SARS
outbreak in Toronto, it would probably not be a priori clear tofocus on proportionality. Singer et al. report: “In the initialstages of the outbreak, authorities named the woman who
carried SARS to Canada from China, and her son, with thefamily’s consent, because they believed it would provide
additional public health benefit. Although public health officials
took great pains to avoid linking ethnicity and illness, the linkingof SARS with someone who had travelled from China,
combined with the public’s limited understanding oftransmission, resulted in many people unnecessarily avoiding
Chinese businesses. Proportionality requires that private
information be released only if there are no less intrusive
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16

ibid p. ix.
Gostin LO, Powers M (2006) What does social justice require fort hepublic’s health? Public health ethics and policy imperatives. Health
Affairs 25: 1053-1059. Schröder P (2004) Gendiagnostische
Gerechtigkeit. Lit, Münster.
18
Childress JF, Faden RR, Gaare RD et al. (2002) Public Health Ethics:
Mapping the Terrain. Journal of Law, Medicine & Ethics 30: 170-178. p.
173.
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Eubios Journal of Asian and International Bioethics 17 (July 2007)
means to protect the public health. For example, naming an
individual or releasing a photograph could be justified if that
person violates a quarantine order.“ 19
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Hence, to consider proportionality as an explicit publichealth ethics principle seems very central to equip public healthpractitioners also in cases of pandemics and emergencies
which belong to the field of public health. 20
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4.3 Benchmarks not to consider – also for conciseness’ sakeSome readers might miss norms in this ethical toolbox.
So let me first repeat that conciseness is a duty for a publichealth ethics framework. As such I focused on only five midlevel prima facie principles that seem to me by far the mostcomprehensive and essential benchmarks for good and rightpublic health practice and research.
As mentioned before, “beneficence” is a principle ofpersonal ethics with a rich history in medical ethics; so it rather
belongs in the toolbox for medical or biomedical ethics. “Nonmaleficence” demands not to harm individuals in the medical
context. Yet, if taken to the public health ethics framework (as anorm that forbids to harm groups or individuals for the publicgood) it does not add anything new that would not be coveredby the other principles – especially as non-maleficence forbids
harming single patients in treatments, to harm them on theirdemand or to take too much risk in therapies. These cases –although prevailing in medical practice and research – are notas the forefront of public health that is, compared to aphysician-patient relationship in which the physician mightprescribe pharmaceuticals or do surgical interventions, noninterventionalist. Yet, in cases where persons have to be
immunized or mandatorily screened there might be a conflict forthe physician and his or her medical ethics and the public good.
Whereas the physician should be bound to (bio-)medical ethics,
the public health practitioners have to follow public healthethical norms. Concrete moral conflicts might have to be solved
for those situations – e.g. by narrowing down the leeway forphysicians.
Sometimes “precaution” is discussed as a principle forpolicy ethics and as such might be a candidate for the ethics ofpublic health and / or public health. But precaution “is all about
taking early anticipatory preventive action“ 21 and as such
reflects a value that is already at the core of public health.
Weed and McKeown consider it also to be a specification of themore general principle beneficence 22 (or, as I would say, “social
utility” or “social beneficence” rather than “beneficence”).
Some might expect “solidarity” as a central benchmark for
public health ethics. I omitted this for two reasons. First,
solidarity is often an expression of mutuality or reciprocity. And
as such only indirectly a moral norm – rather it is prudential. But
if one has in mind that solidarity tells us what we owe to eachother, I would rather say that “solidarity” adds nothing new tothe debate that “social justice” would not cover. In other words:
from an ethical point of view, duties of solidarity must be
justified as duties of “social justice”.
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Values and norms such as “truth telling” and “avoiding
killing” also belong to personal rather than social ethics and areto a great extent covered by the principles of “social justice” or“respect for human dignity”. The same applies to “public trust”.
“Public trust” is an essential value in public health andespecially in times of a public health crisis. In this case it would
further the state to act more effectively and as such further“social utility” if people trust and thus act compliantly.
Furthermore, “respect for human dignity” demands to tell people
the truth 23 and “social justice” means to act on persons’ behalf.
As such, following these principles would mean to furthertransparency which leads to public trust 24 – and to “social utility”
as a consequence.
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5. Methodology – What we should learn from Beauchamp
and Childress
To repeat, conciseness is a virtue of an approach of
applied ethics – such as bioethics or public health ethics. A setof generalized norms – namely principles – that represent
central moral benchmarks to follow in the conduct ofbiomedicine or public health respectively is most helpful to nonethicist practitioners and researchers. This we can learn fromThe Belmont report and the Beauchamp and Childressapproach – and the worldwide applications of theirapproaches. 25
We can further learn that it is fruitful to conceptualize
principles for applied ethics as universal prima facie principles
that can be balanced and specified. 26 What does this mean
more concretely?
The principles are universal because they reflect moral
convictions all people share worldwide. This is the thesis of a“common morality” that grounds Beauchamp’s and Childress’
approach. 27 Defenders of a transcultural “common morality”
believe, in the words of Veatch, “that there are common ‘pretheoretical’ insights – moral laws, rules, feelings, intuitions, orperceptions of maxims – that are shared by peoples throughout
the world. Evidence for this claim is gleaned from commonly
shared judgments that certain behaviors such as killing,harming, and lying, are morally wrong. Others cite universally
agreed upon rights that are ‘self-evident’ or otherwise known toall (giving rise to a world-wide acceptance of a Universal
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19
Singer, Peter A., Benatar, Solomon R; Bernstein, Mark et al. (2003)
Ethics and SARS: lessons from Toronto. British Medical Journal 327:
1342-1344. p. 1342f.
20
Thompson AK, Faith K, Gibson, Jennifer L.; Upshur, Ross EG (2006)
Pandemic Influenza Preparedness: an ethical framework to guidedecision making. BMC Medical Ethics 7: 12. Siehe auch: Singer, Peter
A., Benatar, Solomon R; Bernstein, Mark et al. (2003) Ethics and
SARS: lessons from Toronto. British Medical Journal 327: 1342-1344.
21
Weed, Douglas (2004) Precaution, Prevention, and Public Health
Ethics. Journal of Medicine and Philosophy 29(3): 313-332. p. 317.
22
Weed, DL; McKeown, RE (2001): Ethics in Epidemiology and Public
Health I. Technial Terms. Journal for Epidemiology and Community
Health 55: 855-857. p. 856.
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23
Following Immanuel Kant – the great philosopher of human dignity incontinental European philosophy – to respect human dignity would
mean to never lie, without any exceptions. Kant was even of the opinion
that one must not lie to a murderer that comes knocking at your door
and wants to kill one’s friend that hides in the back of the house. But
this appears implausible to me and as such the principles proposed
here are only “prima facie” principles.
24
Childress, James F.; Gaare Bernheim, Ruth (2003) Beyond the liberaland communitarian impasse: a framework and vision for public health.
Florida Law Review 55(5): 1191-1219. p. 1206.
25
Tsai DF (1999) Ancient Chinese medical ethics and the four
principles of biomedical ethics. Journal of Medical Ethics 25: 315-321.
Zhang D, Cheng Z (2000) Medicine is a humane art: the basic
principles of professional ethics in Chinese medicine. Hastings Center
Report 30 (supplement): 8-12. Veatch R (2006) Benevolent Lies:
Fallible Universalism and the Quest for an International Standard.
Formosan Journal of Medical Humanities 7: 3-18.
26
Beauchamp, Tom L. (1996) The Role of Principles in Practical Ethics.
In: Sumner, Wayne und Joseph Boyle (Ed.): Philosophical Perspectives
on Bioethics. Toronto: University of Toronto Press: 79-95. Beauchamp,
Tom L. (1995) Principlism and Its Alleged Competitors. Kennedy
Institute of Ethics Journal 5: 181-198. Beauchamp, Tom L. (1994)
Principles and Other Emerging Paradigms in Bioethics. Indiana Law
Journal 69: 955-971.
27
Beauchamp, Tom (2003) A Defense of the Common Morality.
Kennedy Institute of Ethics Journal 13 (3), 259-274. Beauchamp, Tom
L. (2001) Internal and External Standards for Medical Morality. Journalof Medicine and Philosophy 26: 601-619.
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Eubios Journal of Asian and International Bioethics 17 (July 2007)

108

Declaration of Human Rights).” 28 Beauchamp talks of “raw data
for moral thinking“ 29 that everybody in the world shares andmight look like imperatives like “don’t kill”, “don’t cause pain or
suffering to others”, “don’t steal” or “treat all persons with equal
moral considerations”. 30 This “common morality” thesis ofapplied ethics finds more empirical evidence from the work of
Harvard psychologist Marc Hauser 31 and was recently also
discussed in this journal. 32
We perhaps all believe that mid-level principles (i.e.
generalized norms formulated in the context of certain
applications – like the four bioethics principles or the five publichealth ethics principles) are agreeable on a quite superficial
level. Yes, of course doctors should benefit the patient andpublic health practitioners should find just public healtharrangements. These principles are “prima facie” which meansthat they should be valid as long as they come into conflict. But
what if two norms come into conflict – this would then be thetouchstone of the truth or at least the applicability of therespective ethics approach. With Beauchamp and Childress, I
would suggest the established methods of balancing (especiallyin particular situations) and specification (especially whenissuing policies and rules) to resolve moral conflicts. 33 I want touse a case study to argue for this methods:
Mr. R is infected with the airborne communicable disease
D. He knows this – as his wife, a doctor who specialized on
infectious diseases, has diagnosed him – and he knows that heis contagious with this disease. Yet, he is about to go on
vacation for three weeks. It is a vacation to Hawaii he has been
dreaming of for years and he does not care if he is a risk toothers but wants to check in for his plane. His wife was first in aquandary about what to do but then in the meantime, while Mr.
R was on the way to the airport, had informed the public healthauthorities. When checking in at the airport, Mr. R is identified
and captured. Mrs. H is the responsible public health official to
make decisions at the airport. She had recently taken classes inpublic health ethics when she was at a course for continuous
education. She notices that there is now a conflict between“social utility” (because a whole plane is at immediate risk tocontract D) and “respect for human dignity” that asks toexercise the liberty of individual’s to decide for themselves. Yet
she balances these principles and comes to the conclusion thatthe risk for the social utility is great enough to balance out theclaims of own decision making of Mr. R. Thus, Mr. R. is not
permitted to enter the plane and the health authorities of the
district take over the case.
Mrs. H notices that future ethical challenges might arise –also when she is not in office but her deputies are. Thus she
specifies the following norm reflecting the principles of social
utility, respect for human dignity, social justice andproportionality: “Whenever a person is known to have a serious
infectious disease that is highly contagious over the air so that it
is likely that other passengers might get infected, he or she is –even against his or her will – not permitted to enter the plane
but has to be held in isolation and handed over to the district’s
public health authorities. Yet, to make sure, this does not apply
to infectious diseases like a simple cold (here to go against
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28
Veatch R (2004) Common morality and human finitude. In: Baumann
E, Schröder P et al. (Ed.) Weltanschauliche Offenheit in der Bioethik.
Duncker und Humblot, Berlin: 37-50. p. 38.
29
Beauchamp, Tom L. (2001) Internal and External Standards for
Medical Morality. Journal of Medicine and Philosophy 26: 601-619. S.
612.
30
Beauchamp, Tom (2003) A Defense of the Common Morality. p. 260.
31
Hauser, Marc D (2006) Moral Minds. How Nature Designed ourUniversal Sense of Right and Wrong. New York: Harper Collins.
32
Saxena R, Verma KK (2007) Morality – Innate or Acquired? Eubios
Journal of Asian and International Bioethics 17: 11-14.
33
Richardson HS (2000) Specifying, Balancing, and Interpreting
Bioethical Principles. Journal of Medicine and Philosophy 25, 285-307.
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persons’ will would be disproportionate as a cold is not aserious disease and people are likely to catch a cold once in awhile anyway) or HIV which is a serious infection but cannot
easily be transmitted. To prohibit persons that are HIV positive
to enter planes would not only be totally disproportionate but
also discriminatory against HIV positive persons.” This rule bean example of a specification in which one spells out “where,
when, why, how, by what means, to whom or by whom theaction is to be done or avoided“ 34 . It is like branching out the
principles by considering each other as side constraints and“zooming into” concrete situations.
This case study is probably trivial because the caseseems obvious – which would then also support the argumentthat you – the reader – and I seem to share a common morality,
because if we both think it is obvious and plausible we seem tohave the same underlying moral values. This case study should
demonstrate how prima facie mid-level principles can be utilized
to make decisions morally plausible and to find justifications foractions. The methods of specification and balancing are goodtools in applying mid-level principles to practice.
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6. Conclusion
The four-principles-approach of Tom Beauchamp and Jim
Childress has been very influential and has proven well inbioethics in the last decades. It has helped practitioners,
researchers and policy makers for almost three decades now to
identify moral challenges, to show them moral beacons fororientation and to come to better argued for ethical decisions
that improved the moral acceptability of their actions. I argued
that the applicability of this approach for ethical challenges inthe biomedical setting should stimulate a principled approachfor ethical challenges of public health as well. Such an
approach can utilize the method from Beauchamp andChildress. Principles for public health ethics, as presented in a
concise set by the author, however, must be different in scopeand content to meet the ethical challenges of public health. But
then these principles can be applied with the help of balancing
and specifications which are methods used and developed inbioethics contexts.

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34
Richardson HS. (2000) Specifying, Balancing, and Interpreting
Bioethical Principles. Journal of Medicine and Philosophy 25, 285-307.
p. 289. See also: Richardson HS. (1990) Specifying Norms as a Way to
Resolve Concrete Ethical Problems. Philosophy and Public Affairs 19:
279-310.
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Eubios Journal of Asian and International Bioethics 17 (July 2007)

Risk Information Assessment
in Pharmacological Projects- Gabriela Marodin, M.Sc.
Doctorate Degree Course in Post-Graduate Program:
Gastroenterology/Medicine Sciences, Universidade Federal do
Rio Grande do Sul – UFRGS- Diana Monti Atik
- Danielle Beheregaray Schulz
Pharmaceutics Academy, Pontifícia Universidade Católica do
Rio Grande do Sul – PUCRS- José Roberto Goldim, Ph.D.
de Porto Alegre; Post-Graduate Program Professor of
Gastroenterology/Medicine Sciences, UFRGS.
Contact: Gabriela Marodin – Rua Coronel Joaquim Pedro
Salgado, 267 apt. 701, Bairro Rio Branco - 90420-060, Porto
Alegre, Brazil
Email: gmarodin@hcpa.ufrgs.br
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Abstract
Good Clinical Practices should guarantee the rights to theparticipants’ safety, protection and well-being. Risk assessment
is a continuous challenge for the Research Ethics Committees(RECs) and a requirement established in Regulatory Process.
The purpose of this study is to verify, as an incident case study,
the risks of adverse events (AE) expected in pharmaceuticalindustry sponsored research projects, by analyzing theInformed Consent Form (ICF), the researcher brochure and the
Research Protocol. Considering 61 protocols, 8543 AE riskreferences were identified. Only 708 (8%) were informed, withtheoretical basis, to both participant and researcher. The other1716 (20%) risk references were presented only in the ICF
without theoretical basis, and 6119 (72%) to the researcher,with theoretical basis, in the protocol or brochure. Our datashows the importance of a careful reading of the documentation
submitted to the RECs evaluation, whose purpose is theparticipant’s active protection.
Key words: Adverse events, Research Ethics Committee,
clinical research.
The study was performed in the Research and Post-Graduation
Group of Hospital de Clínicas de Porto Alegre, where all theauthors also work (Rua Ramiro Barcellos, 2350 - 90035-903 Porto Alegre, Brazil).
Financial support acknowledged from FIPE/HCPA and CAPES.
1. Introduction
Studies involving human subjects should describe thepossible adverse events/expected risks, either in the protocol orin the researcher brochure or in the Informed Consent Form,and should be specified in the project, approved by the
Research Ethics Committee, in order to comply with therequirements of the Informed Consent Form.
Good Clinical Practice (GCP) is an international ethicaland scientific quality standard for designing, conducting,recording and reporting trials that involve the participation ofhuman subjects. Compliance with this standard provides public
assurance that the rights, safety and well-being of trial subjects
are protected (ICH, 1996).
The International Ethical Guidelines for Biomedical
Research Involving Human Subjects were published in 1983 by
the Council for International Organizations of Medicinal
Sciences (CIOMS), in cooperation with the World HealthOrganization (WHO). These guidelines were later revised in
1993 and in 2002 (CIOMS 1993). In 1996, the Brazilian
National Health Council (CNS) locally established that the
Research Ethics Committee should be informed of all adverse

109

events involving the research projects (Conselho Nacional de
Saúde, 1996).
An adverse event (AE) may be any untoward medical
occurrence in a patient or clinical investigation subject
administered a pharmaceutical product and which does notnecessarily have a causal relationship with this treatment. It cantherefore be any unfavourable and unintended sign (including
an abnormal laboratory finding), symptom, or disease
temporally associated with the use of a medicinal(investigational) product, whether or not related to the medicinal(investigational) product (ICH, 1996).
A serious adverse event (SAE) is any untoward medical
occurrence, that at any dose, results in death, is lifethreatening, requires inpatient hospitalization or prolongation ofexisting hospitalization, results in persistent or significant
disability/incapacity, or is a congenital anomaly/birth defect(ICH, 1996).
Performing scientific studies with new drugs is a very
important issue, which requires special care, mainly regarding
the severity of risks of adverse events, to maintain an ethicallyadequate standard.
One of the main factors linked with the ethical adequacyof research projects is the risk associated with such studies.
Many times, the risk is unknown due to insufficient supporting
data or as not being properly described, which may affect the
study development.
According to Bioethics Thesaurus, risk is the probability
that an unfavorable event will occur, comprising a variety ofprobability measures based on statistic data or subjective
judgment (Kennedy Institute of Ethics, 1995). Risk, according toBrazilian Research Guidelines, is the possibility of damages tophysical, psychic, moral, intellectual, social, cultural andspiritual dimensions of the human being, in any stage of a study
or resulting from it (Conselho Nacional de Saúde, 1996).
Giddens (2002) classifies risks according to their origin:natural or constructed risks. Research-related adverse eventswould be classified as constructed risks, as the subjects are
exposed to them only due to their participation in the project.
This author defines high-consequence risks as those in which
the more disastrous the involved damages, the smaller
experience we will have about what we put at risk. Then,
serious adverse events would be considered as highconsequence constructed risks.
The adverse events are classified by the pharmaceuticalcompanies supporting the study or by the researchers
regarding their cause-effect relation, as: related; possibly
related; the relation cannot be discarded; possibly unrelated or
unrelated. Related adverse events imply that there is a known
reaction standard to the studied drug. It is confirmed with the
improved situation after the drug interruption and recurrent
manifestations when using the drug again, and cannot be
explained by known characteristics of the patient's disease. For
possibly related adverse events, there is a reaction that follows
a reasonable temporal sequence after the drug utilization, witha known reaction standard. It is confirmed with the druginterruption, without re-exposure. For 'the relation cannot be
discarded’, there is a reaction after a reasonable temporalsequence, but it may or may not follow a known reaction
standard. Concerning possibly unrelated events, they present
higher probability of being linked with factors other than those
involving the suspected drug (Naranjo and Busto, 1991).
An adverse event can also be classified as being
predictable or unpredictable, or expected or unexpected. Whenconsidered as expected, it can be classified regarding its
occurrence probability as: very common (over 10%); common(1% to 10%); uncommon (0.1% to 1%); rare (0.01% to 0.1%)
and very rare (under 0.01%) (CIOMS,1995).
An unexpected adverse event is a reaction to the drugthat has not been described yet, and then, it has not been

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Eubios Journal of Asian and International Bioethics 17 (July 2007)

included in a research protocol, researcher brochure, Informed
Consent Form, or in the drug circular, for those alreadyapproved (ICH, 1996).
When combining the cause-effect and expectedunexpected criteria, the adverse events can be sorted into threedifferent fields: risk, uncertainty and unknown reactions.
Related and expected events present a quantifiable risk, whichshould be described in all study-related documents. Unrelated,but expected, events are in the uncertainty field category, as
only subjective probabilities can be established regarding theiroccurrence. Unexpected events, whether related to the study
intervention or not, are unknown by definition at the projectelaboration moment. All these situations generate new
information, which may indicate the need for project alterations,changes and updates in the information provided toparticipants, or even its interruption for security reasons.
The risk assessment is a systematic process throughwhich damage possibility, exposure and risk are identified andquantified. This assessment process is intended to prevent
health damages caused by exposures to the drug. The risk
assessment objectives include the risk-benefit ratio analysis,
the definition of risk levels and the help provided to define
priority monitoring and vigilance activities (Oga and Siqueira,2003).
The elevated risk is directly associated with a higher
probability of health-related adverse event occurrences.
According to the adverse event severity and its occurrence
probability, it is possible to determine whether an estimated risk
is negligible, tolerable or intolerable. Then, the risk
characterization represents an important connection between
scientific data from different studies and decision-making
issues, from risk monitoring to communication (Oga andSiqueira, 2003).
Unknown risk, associated with scientific studies,
generates a clear feeling of ambiguity. If the risk is fully
unknown, the reaction may present a feeling of attraction due toa desired or repulsive known reaction, if we consider theknowledge as forbidden. Uncertainty is associated with thechance of a certain event to occur and is expressed as a ratio.
The risk, when expected and known, indicates the occurrence
probability.
The assumption that participating in a study is a risk
situation is based on the Precautionary Principle, which is theguarantee that protection measures exist against potential risks
that, according to the current knowledge, cannot be identified
yet. This principle states that the existence of a risk causing aserious or irreversible damage requires the implementation of
measures that can prevent such damage.
The Precautionary Principle should not be seen as an
obstacle to clinical, and mainly, research activities. It is a way toprotect the legitimate interests of each person in particular, andof the society as a whole. Recognizing the existence of damage
occurrence possibility and the need for its assessment basedon available knowledge is the great challenge to the world
scientific community.
The execution of scientific studies with new drugs isnecessary, but they should be supervised in all their stages by
researchers, sponsors, institutions where the study is being
conducted, research ethics committees and regulatory
agencies, with the purpose of actively protecting the subjects
involved in the study.
An Informed Consent Form, freely provided, should beobtained from each research subject before his/her participationin the clinical study, investigating the possibilities ofrisks/adverse events adequately. It is important to explain therisk associated with the research procedures, verifying theunderstanding and comprehension of the information provided
to the research participants.

The purpose of this study is to verify the risk of adverse
events (AEs) expected in pharmaceutical industry research
projects by analyzing the Informed Consent Form (ICF), theresearcher brochure and the protocol.
2. Method
This is a study of incident cases, with an observationreference to adverse events. For this reason, a study was
performed in 61 pharmacological research projects sponsoredby pharmaceutical industries, submitted to and approved by the
Research Ethics Committee (REC) of Hospital de Clínicas dePorto Alegre (HCPA).
The study consisted of verifying the risks expected in the
ICF comparing to those presented in the protocol or researcher
brochure. A careful reading of the researcher project (protocol)
was done, verifying the expected risks described and whether
they presented the occurrence probabilities for adverse events,
followed by the ICF reading, which considered the same
aspects. Concomitantly, all adverse events were checked in the
researcher brochure that occurred in other preliminary studies
and in previous clinical phases (Phases I, II, III) performed in
the country of origin and other countries, including Brazil, where
they are being conducted. Previously conducted studies
allowed calculation of risk occurrence probabilities regarding
the studied drug and that those risks should be properly
described in the security section of the researcher/sponsor
brochure. After performing the study and comparisons involving
the ICF, the protocol and the researcher brochure, the collected
information was stored in a risk management system databaseof the Research and Post-Graduation Division of HCPA.
The obtained and calculated data was analyzed bydescriptive and inferential statistics. Data assessment was
performed with the help of SPSS program, version 14.
Figure 1: Expected adverse event risks described inpharmacological research protocols, in the Informed Consent
Form and in the researcher brochure.
UUEubios Journal of Asian and International Bioethics 17 (July 2007)
Figure 2: Expected adverse event risks described in the
Informed Consent Form/ICF (participant and researcher) and in
documents of access restricted to the researcher (protocol andbrochure).
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3. Results
Based on the total 61 analyzed projects, 8543 referenceswere identified for expected risks of adverse events (AEs). The
researcher brochure described 6422 references to risks; theInformed Consent Form (ICF) presented 2424 and the research
protocol presented 697 references. Many times, the risks were
not adequately informed in all three documents. Concerning thereport on expected risks, 5704 (66.77%) of the risk referenceswere described only in the researcher brochure, 1716 (20%)
were described in the ICF and 254 (3%) were mentioned only inthe protocol. Both ICF and researcher brochure mentioned
simultaneously 426 (5%) of the risk references. Both protocol
and brochure presented the description of 161 (1.9%) riskreferences, just as in ICF and the protocol: 151 (1.8%)
references. Only 131 risk references (1.5%) out of the total
8543 reported references were simultaneously informed in all
three documents (ICF/Protocol/Brochure), as illustrated in
Figure 1.
Only 708 risk references (8%) were informed, withtheoretical basis, to both participant and researcher. The other1716 (20%) risk references were presented only in the ICF
without theoretical basis and 6119 (72%) were informed only tothe researcher, with theoretical basis, in the protocol orbrochure. Considering the 2424 risk references described in the
ICF, 71% (1716 risk references) were mentioned only in the ICF
and in no other document. Considering the 6827 risk references
informed in the protocol or Research Brochure (see Figure 2),6119 (90%) of them were mentioned only in researcher’s
documents (protocol and brochure), i.e., non-shared
information.
Most of quantified risks were presented only in the
researcher brochure. The ICF described part of the risks, but
not in quantified form.
4. Discussion
The evaluation of risks in pharmacological research
projects is a continuous challenge for Research Ethics
Committees (RECs), since it is a systematic process throughwhich damage possibility, exposure and risk are identified andquantified. The risk, when expected, indicates the occurrence
probability of adverse events. The protocol, the researcher

111

brochure and the Informed Consent Form (ICF) should present,
properly described, the AEs informed in previous studies
involving the studied drug, providing the participants withknowledge to decide about the research participation. Based on
the results obtained, it was possible to verify that most risks of
AEs were described and quantified only in the researcher
brochure. The ICF and the researcher protocol did not present
information on part of such risks. Most of the ICFs were
presented in clear language, enabling the research
participant’s understanding, but did not present all describedrisks, nor the occurrence probability, which may influence thedecision factor regarding the study participation. Only 131(1.5%) out of the total 8543 risk references of AEs were
simultaneously
informed
in
all
three
documents(ICF/Protocol/Brochure) and only 708 (8%) risk referenceswere adequately shared, with theoretical basis, to participant
and researcher. It is possible to observe a great discrepancy inthe reporting of event risks that should be mentioned withtheoretical basis, in the ICF and in the protocol or in the
researcher’s brochure (Figures 1 and 2).
The researcher has the access to the ICF, protocol
and brochure. The participant has the access to the ICF only.
Only the information contained in the consent term is
externally published.
5. Final Considerations
The study refers to risk as those resulting from theresearch intervention, and not those naturally present in theparticipants’ lives. An adequate investigation performed by the
Research Ethics Committee (REC) should include themonitoring of all AEs, especially if the number of occurred
events exceeds the expected risk.
The analyzed projects do not present homogeneity andstandardization to properly express risks that have alreadyoccurred in previous studies. It shows the importance of acareful reading of all documentation submitted to the RECs
evaluation, whose purpose is the participants’ active protection.
The presented results indicate that the institutions should
be committed to investigating systematically and in details theresearch projects involving subjects that are performed in theirfacilities. The information should be sent to the Research Ethics
Committee for its assessment, and if required, the REC should
promote changes in previously approved projects.
After these considerations, we can think of theconsequences of performing a certain study, and whether itshould be conducted or not. Opting for not performing somestudies, or preventing certain subjects from participating,
implies the protection against risks, especially in potential
cases. Opting for allowing studies with expected risks, andinformed serious adverse events, may result in exposure torisks, but with adequate control of the study and new forms of
information to the participants (ICF); and greater damages
might be previously perceived and prevented. In addition, once
established that the risk is higher than the benefit, there is apossibility of thinking it over and interrupting the process,aiming at the health security.
References
CIOMS. 1995. Guidelines for preparing core clinical safety information
on drug from CIOMS Working Group III. Geneva: WHO.
CIOMS. 1993. International ethical guidelines for biomedical research
involving human subjects. Geneva: WHO.
Conselho Nacional de Saúde. 1996. Resolução 196/96 sobre pesquisa
envolvendo seres humanos. Diário Oficial da União, 16 out.
1996:21082-21085.
Giddens, A. 2002. Modernidade e identidade, 105-134. Rio de Janeiro:
Jorge Zahar.
ICH. 1996. Manual para boas práticas em pesquisa clínica. Agência
Européia para Avaliação de Produtos Medicinais; Unidade de
Avaliação de Medicamentos Humanos.

Eubios Journal of Asian and International Bioethics 17 (July 2007)112

Kennedy Institute of Ethics. 1995. Bioethics Thesaurus.Washington:
Georgetown.
Naranjo, C.A, and U. Busto. 1991. Reações adversas às drogas. In
Princípios de farmacologia médica, ed. H. Kalant, and W. H. E.
Roschlau, 537-542. Rio de Janeiro: Guanabara Koogan.
Oga, S., and M.E.P.B. Siqueira. 2003. Introdução à toxicologia. In
Fundamentos da toxicologia, ed. S. Oga,1-7. São Paulo: Atheneu,
2th edition.

Palliative Care in India:
Ethical Issues Underlying
Paradigmatic Shifts- Suhita Chopra Chatterjee, Ph.D.
Prof. in Sociology, Dept. of Humanities and Social Sciences
Indian Institute of Technology Kharagpur
Kharagpur 721302
Email- suhitacc@yahoo.co.in
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Abstract
The concept of palliative care represents a major
paradigmatic shift in biomedicine. Understanding the sociopolitical factors which propelled the introduction of thisparadigm in affluent countries of the West, may help developing
countries to locate its relevance in their own local context. The
paper identifies these factors, and in their backdrop examines
the problems involved in creating specialist palliative carecenters in India. It argues that a large number of ethicalcomplexities may arise in a health care system which is alreadyconstrained by scanty resources and shortage of healthworkers. This suggests that mere adoption of westernparadigms in end - of- life care may not help a country unless it
has the infrastructural and organizational set up to implement
new paradigms.
In many countries, efforts have been made to organize
various stakeholder groups to develop a strong advocacy for
quality end-of-life care, incorporating palliative care (PC)programs. Palliative care is primarily directed at providing relief
to a terminally-ill person through alleviation of symptoms andpain management. The goal is not to cure or hold death inabeyance, but to provide comfort and maintain the highest
possible quality of life for as long as life remains. Well-roundedpalliative care programs also address mental health andspiritual needs of the terminally ill, and provide compassionate
specialized care. Palliative care is well-suited to aninterdisciplinary team model (involving social workers,
psychologists, and alternative therapists) that provides support
for the whole person and family members who are sharing theperson’s last journey in life.
This change of emphasis in the care of the terminally ill,seeded by the Hospice movement, constitutes a major
paradigm shift in biomedicine. Palliative care is now animportant concept in end- of -life care in the West, especially forcancer patients. Many countries have integrated it within asystem of health care planning involving institutional care,
hospices and home care and have evolved an efficient
identification, referral and assessment system for the terminallyill. Insurance coverage has also been broadened, to include
health support provided by skilled nursing facilities, homes andhospices, and to cater to the needs of people requiring longterm care.
How far can the concept of palliative care, as it isdeveloped in the West, be generalized and advocated in India?
If palliative care is defined as care-- the goal of which is theachievement of maximum comfort and function of the total
patient, then it can and should always be an integral part of theentire spectrum of patient care, irrespective of the level ofhealth care of the country. In fact, it need not be confined only
to the care for the patient who has been diagnosed with anirreversibly deteriorating or terminal condition, and for whom
curative treatment is no longer possible. As an approach, it canbe followed by all. But if specialist palliative care centers are to
be run in a developing country like India where even primarycare is lacking, a fine balancing has to be done between theneeds of a vast majority of population whose lives could be
improved through minimal treatment, and the terminally ill’sright to a dignified death. This is not merely a question of ethicalchoice in the face of scanty health resources, but also a matterof judicious assessment of a country’s infrastructural andorganizational capacity to implement new concepts andapproaches. In other words, one needs to implement concepts
and approaches recommended by WHO with due considerationof their relevance in local conditions. In the absence of relevant
structural and organizational inputs, any innovation, howeveringenuous it is, may create serious contradictions. The dangers
are especially real when we try to emulate models of care fromsocieties which have made significant strides in improving
health care to bring in other refined quality dimensions likecompassion for those who are dying.
To initiate a system of healing in India based on
symptomatic relief, caring, home care and spiritual comfort, is tore-emphasize an earlier model of healing when biomedicine
had not yet attained its present triumphal success as a science.
We may recall how WHO had to make serious efforts to change
the health behavior of people in developing countries from a
primarily home-based approach to an institutional one,
incorporating biomedicine as the only scientific system ofhealing--even to the neglect of highly developed indigenous
medicine. The latter was holistic, non-invasive, personalized
and integrated with spiritual healing.
In developed countries, a de-technological model might
redress the imbalances (at least in end- of- life care) created by
an excessively scientific mode of health care. But in many
developing countries, like India where the full potential of atechnology oriented medicine has not been fully realized as yet,the introduction of palliative care may create several
contradictions not foreseen by the West.
In fact, if we were to ask: Why did palliative care evolve
the way it has and at this crucial juncture of medicine’s glorious
success, we find that at least four cluster of factors, at the levelof macro-level planning, may have prompted a paradigm shift inWestern countries. An understanding of these may uncovercomplex changes in biomedicine on one hand, and the politicaleconomic context on the other. This, in turn might help
developing countries to locate palliative care in their own
context, and accordingly design strategies for effective end- oflife care.
Factors Propelling Paradigm shift in the Westth
1. The late 20 century has witnessed an acute crisis in
the health care sector created by a long life span of population
and, an epidemiological pattern of most people dying of
diseases with long deteriorative terminal courses. High-techbio-medical establishments that deal with such complexities
have become extraordinarily expensive with formidable
bureaucracies and increasing need for specialists. Many
American hospitals, for instance, are closing doors, unable tosurvive in a competitive economic environment characterized
by increasingly scarce resources and fragmentation in the
medical market, and are being forced to adopt a major
restructuring of the entire health delivery scheme (Russell1979). So acute is the crises that scholars predict that thePPEubios Journal of Asian and International Bioethics 17 (July 2007)
venerable hospital may soon become an endangered species(cf. Risse 1993).
Within the structure of the existing system it has also
become difficult to ensure personal care and nurses were thefirst to recognize this malaise. A rapidly falling average length ofstay at the hospital has made it difficult for the nurses todevelop high degree of mutuality and professional intimacy
necessary for good caring. They made efforts to redeem theirstatus within the professional hierarchy and also carve out aniche for themselves by developing a separate nursing zone.
2. There is also an acute shortage of health workers.
According to the World Bank, there are currently 57 countries
with critical shortage of health workers equivalent to a global
deficit of 2.4 million doctors, nurses and midwives. Among thehealth workers, the shortage of nurses is particularly acute (TheWorld Health Report 2006).
3.To make matters worse, there are growing disparities inhealth care delivery systems due to poor representation of
ethnic and racial minorities (Baldwin 2003).Provider bias is
becoming significantly important with the growing allegation ofWhite domination inherent in, and perpetuated by medicine’s
research, clinical, and educational practices (Byrne, 2000;
Feagin & Vera, 1995).
4. In addition to the above, in recent times, biomedicine
has also been subjected to enormous criticism for its deep
materialistic and reductionist stance (Kleinman 1995), inability
to fathom pain and suffering (Illich 1976, Casell 1995, Good etal. 1994)) and failure to accommodate within its fold alternative
paradigms of care. There has been a deep reaction toexcessive
medicalisationof
diseaseanddeath,
technologisation and bureaucratization of medical care, andimpersonal, de- humanizing treatment regimes. palliative careseems to be redressing these problems in biomedicine
It is primarily in response to the above factors that theconcept of palliative care emerged to emphasize care overcure. To cope with the crisis of health workers, solve theproblem of disparities in health care delivery and increase
patient satisfaction, perhaps the most practical step was to shift
the locus of attention from institutional settings to non institutional ones--home, community health centers andoutpatient clinics, often blurring the distinction between socialand medical care, in some respect. The concept of home careand hospice care need to be understood in the sense also
(Struthers 2003). Putting care options in the hands of thefamilies themselves, centers the ill person within his or her own
social context, thereby avoiding the politics of different interest
groups. The slant towards a caring approach requires a teamapproach and palliative care seems to address this issue also
through a multidisciplinary model.
Palliative care in India: Ethical Complexities
Many of the structural factors which have served as
propelling forces for introduction of palliative care in the west
are differently located in the Indian context. Some are in fact,
non-existent, and others though existing cannot be overcome
with the same strategies as adopted by the west. We cannot
overlook the fact that the concept has been introduced inIndia’s health care system which is extremely poor. India’s
health spending is among the lowest in the world--USD4 aperson, per year, less than one per cent of its gross domestic
product, according to the United Nations Development
Program. In such a scenario, how does a system geared
towards enhancing quality end- of- life care perform; what are
the major constraints, and what modifications are necessary to
improve the system?
Many NGOs have started working in this area since
1980’s with help from international donors and individual
agencies. Although it is still too early to predict outcomes, it issimplistic to assume that palliative cares would help India

113

achieve the same quality of care for its patients as afforded
through similar structures in developed countries. As
Rajagopal--one of the founders of the palliative care movement- himself admits, there are many states which do not have any
palliative care services, oral morphine (used for pain relief)
reaches less than 1% of the needy and “the medical andnursing profession at large, have not accepted palliative care as
an essential part of health care” (Rajagopal 1996).
If we examine the reasons we find that unlike westerncountries, India has not evolved an efficient system of healthcare as yet. End- of- life care is part of health care in general,and improvement in the former precedes improvement in thelatter. Quality palliative care services require an integrated
health care planning involving institutional care, palliative care,
Hospices and home care--a feature lacking in India. In theabsence of a continuum, or even a strong hospital- hospice/palliative linkage, palliative care centers remain isolated
experiments in healing. To establish a continuum, we need aproper identification, referral and assessment system. This
would be possible only when we have strengthened our existing
health services especially primary health centers and also thecentral role of the General Practitioner at each level. All thisrequires structural changes--changes in medical education,
relevant guidelines to medical practitioners to make a transition
from cure to care, with corresponding education and awarenessamong both patients and families about the importance ofpalliative care. Unless these structural inputs are present,
palliative cares would remain isolated experiments.
Second, India is facing an acute shortage of trained force.
While the west (which also faces similar problems), out sources
personnel, especially nurses from developing countries, wecannot adopt similar methods to mitigate our crisis. India,
Bangladesh and Indonesia top the list of South and South East
Asian countries which have the greatest shortfall of healthprofessionals. Although the number of registered doctors inIndia has increased from 61,800 in 1951 to about 645,825 in2005, but that still means only 0.60 doctors for 1000 people.
India has 1 nurse to 2,198 people. As compared to this, inEurope and North America, the figure is much greater thantenfold. An Escorts Heart Institute and Research Centre
document prepared in 2005 stated that India would need atleast one million more qualified nurses and 500,000 more
doctors by 2012 (Down to Earth 2006). This, combined withmismanagement of existing facilities and manpower makes thesituation worse. Researchers from MIT and Princeton working
in 100 villages in Rajasthan found a no-show rate of 44%
among medical personnel, rampant absenteeism among
government doctors and nurses. In other words, even a
dedicated workforce is not available at present to run palliative
care programs.
One way of tackling the problem of workforce in the west
has been to shift the locale of treatment from institutionalsetting to home, or at least provide people with the option ofhome as the locale of dying. At present, in India some homecare services are managed by NGOS, others are linked to
inpatient units. Preliminary field observations show that
constrained by shortage of workforce, home visits are few andsporadic, the team is not always constituted with a doctor, andlarge distances are involved in covering each enlisted family, sothat eventually only a few benefit at the end of the day .
Moreover, in case of emergencies at odd hours, there is no wayof locating team members. The link with a GP or the primary
health centre is poor, and in any case constitute unreliable
source of support. A sound territory –wise referral andtreatment centre is necessary to obviate the crisis. It also needs
to be borne in mind that enabling people to die at home is acomplicated task which needs to devise ways of empoweringfamilies, provide public education balanced with continuing
effort to improve home based models of care, early and114

Eubios Journal of Asian and International Bioethics 17 (July 2007)

continuous risk assessment and training for palliative care notjust for specialists but also for primary care professionals(Gomes and Higginson 2006).
We may also note that many patients in India, due to suboptimal conditions at home, would be better cared at hospital. A
sense of abandonment results in them when discharged frominstitutional settings. Home death, in many cases, results fromlimited resources and lack of alternatives rather thanpreferences. More research is necessary to investigate patient’s
preferences and factors which could indicate directionality or
cause for such preferences --- factors related to illness,
individual characteristics or health care input, for instance.
Home care raises serious ethical implications even in richcountries. As Garrard (1996) points out, a reasonable choice
has to be made between alleviating one person’s distressing
symptom and actually saving another person’s life. In resource
poor countries, these ethical complexities become even more
complex. Attributing moral propriety to quality rather thanquantity is well nigh difficult. Unlike western countries, homecare service providers receive limited assistance from public
and private sources and have few trained community nurses.
A quality palliative care program involves liberal funding.
It may be mentioned here that India is a low income country
with 26% population living below the poverty line and 35%
illiterate population with skewed health risks. But, insurance isavailable to only a small number covering 10% of the total
population. Health insurance not only needs to reform coverage
but also regulatory policy to broaden range and coverage of the
program.
Finally, while we speak of palliative care’s enormous
potential to provide holistic treatment, it needs to be borne inmind that under the monopolistic onslaught of biomedicine,indigenous medicine in India has received a major set back.
There is, at present, no relevant system to organize andintegrate the diverse findings of indigenous medicine withbiomedical practice. Incentives for patients to pursue
indigenous medicine are also poor since it falls outside thepurview of the existing insurance schemes. Moreover,indigenous medicine and spirituality in India are intertwined inways difficult to decipher in the west. Promoting the former also
helps inculcate spiritual values.
But the precise meaning of spirituality in modern life andwithin the modern health system remains fuzzy and unclear.
Spiritual healing involves engaging the dying person’s
consciousness. But how do we achieve this? Do the meanings
attributed to illness by the spiritualists on the one hand, and thedoctor on the other, create contradictions in meanings for thepatient? Can the patient in the grip of pain really draw solace
from the discourses which are meta- body in nature?
There is not much empirical research on spirituality to
substantiate all this. We also don’t know the nature, mechanismand delivery of spiritual care. . The efficacy of spirituality innursing practices, as Peberdy (2000) has rightly pointed,
depends on structural and organizational factors, too. Spiritualmatters are not only matters of relationships between
individuals; the ethos of the institution and morale of the carers
are equally important. This draws attention to the need to
improve the employment conditions of nurses and caregivers
and the amount of support and recognition to informal
caregivers as well.
Can spiritual care be delivered from within the structureof professional care or outside it? How do we integrate aspiritual care plan with medical care? Do we deliver it
independently or with the nursing and medical care plan? Its
integration in some cultures, may juxtapose the almost fatalistic
doctrine of life and death (as in Buddhism) with the awesome
optimism of western medicine to cure all diseases. This may
also contradict indigenous systems of medicine (like Ayurveda)
which clearly admit the limitations of physicians in healing

complex diseases. Then, spiritual care means different things todifferent hospices and palliative centers. A particular hospicefor instance considers a quiet companioning presence, justlistening, an expression of love and companionship, a humor orfriendly chat and prayers as constituting spirituality. Others lay
primacy on excellent interpersonal skills and communication(Buckman 2000).The variations in meanings can be immense.
But, these measures may not still be adequate in providing thebest solace to a dying individual.
Research for Capacity Strengthening
A careful assessment needs to be made about palliativecare’s relevance and effectiveness in the Indian situation. There
has been no systematic audit on service outcomes and main
QOL domains remain untested. Moreover, there are different
models of palliative care and we do not really know how
effectively these models respond to pain and suffering of thepatients and their families, and the competence of different
caregivers, both paid and unpaid to respond to eventual fatal
chronic illness.
Moreover, it needs to be borne in mind that as a distinct
approach to care for terminal patients, palliative care in theWest has been mainly restricted to cancer patients and does
provide many benefits. Not much is known about translating
practices developed mainly in relation to cancer into feasible
practices for the old, dying from a much more diverse multisystem pathology (see Wisam et al. 2006, George and Sykes
1997). But under Indian conditions it is debatable whether weshould focus on cancer patients alone and scanty data exists
with respect to workable options in other diseases.
There is another ethical dilemma --what aspects ofpalliative care should receive the greatest funding? Should theaim be to provide the best possible services for a limited
number of patients,or should there be an excellent pain andsymptom control for everyone, even if this means that there areinsufficient resources to deal with all the fears and anxieties
which patients may be experiencing?
Conclusion
To conclude the paper has looked at the implications ofadopting palliative care centers in India. It suggests that mere
adoption of new paradigms may not serve their purpose unlessorganizational and infrastructural facilities exist for theirimplementation. In India, a large number of contradictions may
be expected when these centers operate within a larger
system, which is so constrained as to be unable to support
people with even primary health care. Moreover, the objectivesof palliative care can hardly be achieved unless these centers
are sufficiently funded, properly coordinated, manned bysufficient numbers of trained professionals, and incorporate
new medical training programs and research in pain
management.
References
Baldwin, D. 2003. Disparities in Health and Health Care: Focusing
Efforts to Eliminate Unequal Burdens. Online Journal of Issues inVol.
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No.#1,Manuscript1.
Available:
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http://nursingworld.org/ojin/topic20/tpc20_1.htm
Buckman, R. 2003. Communication in Palliative Care: A Practical
Guide, pp.146-173 In Donna Dickenson et al. (eds.). Death, Dying
and Bereavement. The Open Univ. Press in association with Sagend
Publications.2 . Ed. London.
Byrne, M. 2000. Uncovering Racial Bias in Fundamental Nursing
Textbooks: A critical Hermeneutic Analysis of the Portrayal of
African Americans. Unpublished Dissertation, Georgia State
University, Atlanta.
Casell,E. 1991. The Nature of Suffering and the Goals of Medicine .
New York. Oxford University Press.
Down to Earth. 2006. Short Handed. Cover Story.
Feagin, J., & Vera, H. 1995. White Racism. New York. Routledge.
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Garrard, E.1996. Palliative Care and the Ethics of Resource Allocation.
International Journal of Palliative Nursing 2(2): 91-4.
George, R and Sykes J. 1997. Beyond Cancer? In S. Ahmedzai, D.
Clark and J. Hockley (eds). New Themes in Palliative care.
Buckingham. Open Univ. Press. pp.239-254.
Gomes,B.and Higginson I. J. 2006. Factors Influencing Death at Homein Terminally Ill Patients with Cancer: Systematic Review. BMJ 332:
515—518.
Good.M.-JP.Brodwin,B. Good, and A. Klienman, eds. 1994. Pain as
Human Experience: An Anthropological Experience. Univ. of
California Press. Berkeley.
Illich, Ivan. 1976. Limits to Medicine: Medical Nemesis. The
Expropriation of Health. Penguin. London.
Kleinman, A.1995. Writing at the Margin. Discourse Between
Anthropology and Medicine. Univ. of California Press. Berkeley.
Peberdy, A. 2000. Spiritual Care of the Dying People. pp73-81. In
Donna Dikenson et al. (eds.). Death, Dying and Bereavement. Sage
Publications. London.
Rajagopal, MR.1996. Problems of Palliative Care Delivery in India.
Indian J Pall Care 2: 31-33.
Risse, Guenter B.1993. Medical Care. pp.45-77 In Companion
Encyclopedia of the History of Medicine. Vol. 1 Bynum, W. F. and
Roy Porter (eds.) Routledge. London and New York.
Rusell, L.1979. Technology In Hospitals. Medical Advances and Their
Diffusion. Washington DC. Brookings Institute .
Smith, M.K. & Henderson-Andrade, N. 2006. Facing the Health Worker
Crises in Developing Countries: A Call for Global Solidarity. Bulletin
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Wisam Al-Hakim et al. 2006. The Palliative Role of Orthopaedics. BMJ
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A Sikh Perspective on
Human Genetic Advances- Gursatej Gandhi, Ph.D.
Department of Human Genetics, Guru Nanak Dev University,
Amritsar 143 005, Punjab, India
E-mail:gandhig07@hotmail.com; gsbau@hotmail.com
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In this paper some recent advances and applications ofhuman genetics are discussed from the context of Sikhism.
Being born as a human being in the Sikh (disciple) tenet offaith, as in Hinduism in general, is a culmination of the journeyof the soul through 8.4 m transmigrations /reincarnations(SGGS, p.50---Through 8.4 million incarnations you have
wandered, to obtain this rare and precious human life). It is
written thus in the holy Sikh scripture, Sri Guru Granth Sahib(SGGS- the embodiment of the Sikhs Guru’s (teacher’s)teachings; SGGS,p.326--The mobile and immobile creatures,insects and moths - in numerous lifetimes, I have passed
through those many forms. I lived in many such homes, O Lord,
before I came into the womb this time. I was a Yogi, a celibate,a penitent, and a Brahmchaaree, with strict self-discipline.
Sometimes I was a king, sitting on the throne, and sometimes I
was a beggar; also see SGGS,p.176). Actually, the present life
is a gift from the Almighty because only in the human form cansalvation from the karmic cycle of life be achieved throughmeditation and prayers (SGGS, p.12-This human body has
been given to you. This is your chance to meet the Lord of the
Universe; SGGS, p.28-This opportunity shall not come again. In
the end, they depart, regretting and repenting), and by leadinga godly way of life (SGGS, p.326--- Says Kabeer, O God, havemercy on me. I am so tired; now, please bless me with Your115

perfection) and serving humanity selflessly without adopting an
attitude for gaining returns/retributions.
Further to this context is the observation that for the
believer of the faith, whatever occurs in one’s life is for the goodand probably for the betterment/improvement of the individualin terms of an after-life and that whatever occurs in one’s life
should be accepted with a calmness and/or a gladness of heartneither to be tampered with or altered by prayers nor queried
into the grand plan of things (rather in His grand plan) because
its alteration or endeavours to alter it will cause an imbalance ofthe law of nature as identifiable with the karmic law. A Sikhshould be in status quo, i.e. neither happy when in joy nor sadwhen in distress-meaning keeping a steady state of mind asthat of calm acceptance. The clothing of the soul as a humanbeing also does not requisite becoming a recluse in order topray/meditate for achieving salvation but by being ahouseholder (SGGS,p.281--- In the midst of your household,remain balanced and unattached) and earning one’s life
through hard work and thereby fulfilling one’s obligations to thefamily. For the society and humanity, it mandates that one
serves with humility; protection of the weak, looking after thedestitute and standing-up for righteousness are parameters of
the Sikh way of life (SGGS, p.26--- In the midst of this world, doseva (service), and you shall be given a place of honor in the
Court of the Lord). A tolerance of others’ religions without
entertaining/ accepting fanaticism has been another attributeexemplified/practiced by all the ten Sikh Gurus (teachers).
However, everything occurs because it has been ordained/
predestined and even praying and meditating by a person ispossible if only it is as per the Almighty’s wishes (SGGS, p.636- We come into the world, and we depart, with our destiny
written and pre-ordained, O Beloved; realize the Command of
the Commander). And then there is also free will (SGGS,p.787-- That alone is a good deed, O Nanak, which is done by one's
own free will).
Basics of Sikhism
Hence according to a Sikh inculcated into the way of life
as per Sri Guru Granth Sahib, everything occurs as ordained by
the Almighty and happens for the best for there is meaning to
all things and purposes (SGGS, p.328--- So many pregnancies
end in miscarriage - why was this one spared?). For the
believers, the happenings in one’s life are lessons that can
assist in one’s spiritual growth or for an after life-leading tosalvation (SGGS, p.751--But those who are attuned to the True
Lord, are not reincarnated again), or for an increment in one’s
spiritual growth. Extended to advances in Human Genetics,
especially in Medical Genetics, a practicing Sikh to all intents
and purposes will accept all the illnesses and diseases that
affect him (SGGS,p.1326 --My mind and body are calm andtranquil; the disease has been cured, and now I sleep inpeace). Of course, any treatments available would beundertaken by him, given that he has been suitably informed as
to their nature. However, medical treatment which could have/
has been obtained from another person’s life or has put anotherlife at stake is to be categorically abstained from. This goesalong with the tenet of keeping life sacred. The Gurus, as
exemplified by their lives and conduct of life, upheld the rightsof the oppressed, gender equality, equality of class, creed andreligion, standing-up for righteous living, fighting tyranny andavoiding harm even to animal and other life forms.
This cuts across the overuse of the casual attitude
towards abortion, since its widespread misuse following
introduction of ultrasonography to assist obstetricians or for
genetic diagnosis. Becoming legalised as a means of familyplanning and family spacing, abortion led to its further misuse
for female foeticide. This did decrease female infanticide but led
to further drastically skewed sex-ratios. What of the Sikhtenets? They have been swept away by the acclaimed

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goodness of western medicine/advances and science. The
system of Allopathic medicine has been adopted without
cynosure with a naïve belief that it is the best and only remedialaction available. As mentioned by Singh (2006), many of thoseguilty of these crimes (female foeticide) against humanity are
Sikhs, although not the only ones, yet neither social nor
economic desperation nor cultural constraints drive them to it.
According to Coward (1993), though abortion is accepted byHindus and Sikhs if essential to preserve the life of the mother,
yet the religious prohibition of abortion is sometimes at odds
with the cultural preference for sons (Coward and Sidhu, 2000).
An article with views of different religions on abortion (TheOrange County Register,1998) mentioned that in the Sikh faith,abortion, as all killings counters God’s love for creation. The
ages’ old philosophy and the thinking and reflective nature havegiven way to easy acceptance of all scientific advances without
assessing their effects and consequences. The spawning of
fertility clinics and associated acceptance of procreation havealso become a part of the acceptable system. Cloning,therapeutic and/or reproductive, prenatal, preimplantation andpre-symptomatic diagnoses/screening are all avenues which do
not hold inhibition for the society. The concept about the souland the karmic way of life, an after life and/or salvation are
glossed over among the quagmire of rituals and easy means ofgetting one’s demands met; not by calm acceptance of thedivine command through meditation and prayers but by thecalm acceptance of solutions offered by western science andmedicine. Where congenital defects/genetic disorders/incurable
diseases in the family were thought of as lessons for learning at
a higher plane, now these are constraints to a modern andsmart way of life, a burden too hard and difficult to carry, a yokevery difficult to bear, stigma and all. The general view goesalong with the opportunistic way and manner of life style bytaking a condescending way out of life’s stresses. Sikhism, on
the other hand, postulates that all problems and solutions lie
within the purview/ throes of prayers (SGGS, p.1219-Meditating, meditating in remembrance on my Lord and Master,
I became cool and calm; my pains, sorrows and doubts aregone) and in accepting Almighty’s Hukam (SGGS, p.209--Whatever God does, accept that with pleasure; in comfort andin suffering, meditate on Him). The concept of Hukam has been
best described as a combination of God’s will, order or system(Rao et al., 2005).
With advances in Science and Technology have theissues of Prenatal Diagnosis, abortion, contraception vis-à-vis
family planning and family spacing, sex selection,
preimplantation
diagnosis,
Assisted
Reproductive
Technologies, Gene therapy, Reproductive and therapeuticcloning, Stem Cell biology, Euthanasia and assisted suicide,
Organ donation and transplantation, inter alia surfaced. The
advances (especially those pertaining to Medical /Human
Genetics) from what is there in scriptures can only be viewed in
the context of not going against God’s will and that in the grandscheme of things, what is ordained will come to pass for it is inaccordance with one’s karma and deeds performed in (an)earlier lives (life). These are fruits as such and the present
human life offers opportunity towards spiritual evolution andsalvation (SGGS, p.706---As one plants, so does he harvest;
the body is the field of actions. The ungrateful wretches forget
the Lord, and wander in reincarnation; SGGS, p. 300---Taking
to the Sanctuary of the Supreme Lord God, his comings andgoings in reincarnation are ended).
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Prenatal Diagnosis, Abortion, Sex selection, Family
Planning and Spacing
The acceptance of all these techniques and procedures
hinge and pivot on the questions of ‘when life begins?’ The
scripture specifies that life begins at the time of fertilization(SGGS, p.706---From egg and sperm, you were conceived, andplaced in the fire of the womb; SGGS, p.706--- Creating thesoul, the Lord places this creation in the womb of the mother).
Therefore the concepts of ‘life’ and ‘death’ need to be revisitedin the present scenario.
Sex Ratios
The Census of India (2001) data reveal a drastic offset in
the female-to-male (F:M) ratio in the 0-6 yr. group and this has
shown a steady deterioration parallel to the introduction andwidespread use of ultrasonography in the Indian sub-continent.
Amniocentesis was first introduced in India in 1974 at All India
Institute of Medical Sciences, New Delhi to detect foetal
abnormalities. By 1975, it was being used for conducting
selective abortions but was stopped in 1979, when the Govt. ofIndia banned the misuse of medical technology for sex
determination in all Govt. institutions (Singh and Arora, 2006).
The two-child family norm policy of the government (TheNational Population Policy, 2000) probably invited the misuse ofthis technology for sex determination/selection and family
spacing coupled with the legalization of abortion as apopulation monitoring and control method (The 1972 Medical
Termination of Pregnancy Act in India legalized abortion inorder to reduce the incidence of illegal abortions c.f. Pande andGupta,1979). The Dowry Prohibition Act of 1961 and the Hindu
Succession (Amendment) Act 2005 (of The Hindu Property Act
of 1956) further fuelled this. The ban on dowry invites
harassment of the daughters by in-laws while daughters as
stakeholders in parental property conflict with patrilineal culture.
The fate of the female foetus was hence sealed. The second
Guru, Guru Angad Dev ji also condemned the practice of dowry(SGGS, p. 435---You have lost your self-discipline, you fool,and you have accepted an offering under false pretenses. The
daughter of the alms-giver is just like your own; by accepting
this payment for performing the wedding ceremony, you havecursed your own life).
The medical fraternity also played a role in heavily
promoting sex selection through ultrasound examination. By thetime the ramifications were understood the damage had alreadybeen done. Female foeticide substituted for female infanticide(the age-old practice common to this part of the world). The
government finally rose to the occasion by giving The Prenatal
Diagnostic Act, 1994. This was later amended (2001) to include
the Preimplantation techniques. However, there has beenlassitude in its implementation and sex ratios have further
fallen. The affluent Punjabis in the wake to appear modern,civilized and highly socially adaptable have adopted theseadvances in technology and science very eagerly. The
underlying concept pertaining to ‘life’ and its ‘values’ has all
been corroded and the collective wisdom/higher consciousness
gained through the scriptures and over the Yugas (epochs) has
been compromised. The Sikh Gurus always revered womenand a special mention to this effect is present in the Sri Guru
Granth Sahib (SGGS, p.473---From the woman is our birth, inthe woman's womb are we shaped; To the woman we areengaged, to the woman we are wedded; The woman is ourfriend and from woman is the family; Through the woman are
the bonds of the world; Why call woman evil who gives birth tothe leaders of the World? From the woman is the woman,without woman there is none).
The continuous, contrary and unresolved debate by thescientists and most religious bodies on “when life begins?” hasdone nothing to resolve the issue. The thinking and debatinginterludes by the last generation (which supposedly is wiser andmore religiously inclined) have not been utilized; the present
generation has no time to contemplate-it accepts everything for
its selfish motives. The modern Sikh/Punjabi has hence calmly
and over-eagerly accepted these technologies amidst peer andsocial pressures. The Sikh scriptures specify the status of theembryo and foetus as embodied with life, having
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consciousness, and that too with a high statute and degree of
spirituality. Even in an upside down position in the womb fornine months, the foetus performs ablution by praying and is intune with the Almighty (SGGS, p.1013--Through the union of
mother and father are given the egg and semen (which) form(s)the body. In the uterus the fetus develops with head down in
tranquility where God arranges every type of food; SGGS,
p.337---You were upside-down, living in the womb; you
generated the intense meditative heat of tapas (meditation)).
This harmony with Almighty however gets eroded gradually
after birth as the infant progresses from infancy to adulthood(SGGS, p.337--- He leaves the womb, and comes into theworld; as soon as the air touches him, he forgets his Lord andMaster). This casual attitude has also inundated the “abortion”
scenario leading to the skewed sex ratio-actually a case fordoubly aggrieving-a female and then a female abortion.
However, the tussle is amongst the God-fearing who believe inthe sanctity of conception, believing it to be a life-force and notaborting it even in cases of an abnormality/disorder – taking it
as a ‘hukam’ (directive) and bearing it with forbearance andgratitude (SGGS, p.57---Those who see pain and pleasure as
one and the same find peace; they are pierced through by the
Shabad (prayers/Psalm), taking it as a boon to appease sins ofpast lives or as a pay-off of karmic debts (SGGS,p.695---Painand pleasure are the result of your own actions). Presently,
very few believe in such a philosophy. Non-conformation to orwith the newer innovations or technologies is considered oldfashioned. Discussions on such issues are ignored andconsidered self-righteous. Opportunism is the forte.
Embryonic Stem Cell Research
The issue of Stem Cell Research (SCR) is not wellunderstood by the lay person. Chahal (2004) has observed thatthe scriptures do not condemn research and benefits ensuingfrom SCR and that if a treatment option or medication isavailable, it should be used for the concerned ailment. This
adage does not delve into probing into the etiology or source orbase of the medication/ treatment option. Rather substantial
evidence from medical research is considered a good enoughreason to use it. A thought-provoking and inflammable debate
could arise if clarified that embryonic stem cells (ESC) are
derived from cells destined to be embryos with a full potential ofgrowing into adults. It is believed that the earthly karmic cycle oflife begins at conception (the entry point for a soul which has
also spiritual and past karmas; SGGS, p.922--- The Lord placed
the soul to the cave of the body, and blew the breath of life into
the musical instrument of the body). With left-over embryosfrom assisted reproductive technologies forming a stock-pile forembryonic stem cells to provide treatments for several
debilitating conditions, does this or does this not amount totreatment at the expense of a life? And since the embryo
develops into the foetus, its abortion or preferential abortion if afemale, does this not also comprise the same overture in termsof life and personhood? The scripture states ‘You murder living
beings and worship lifeless things; at your very last moment,
you shall suffer in terrible pain’ (SGGS, p.332).
The availability of Assisted Reproductive Technology(ART) in mushrooming fertility clinics and no set procedures orclear-cut guidelines along with an overtly casual approach
towards
sperm
donation/acceptance/
ova
donation/
acceptance, surrogacy and the like, opens up a plethora ofissues but only for those who want to delve into the intricacies
of life-forms as portrayed in the scriptures. The religious
philosophy of calm and gratuitous acceptance of life
happenings is glossed over in the wake of casual and readyacceptance of medical advances. There is a negative tendency
of not-to-make an in depth analysis of any advancement rooted
in the theory that any task performed in ignorance is neither

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rated a sin nor a crime and metes a pardon in the Almighty’s
court.
The SCR issue offers two avenues for contemplation- theuse of cells for somatic therapy/organ formation, andreproductive cloning. Again the ‘bone-of-contention’ is based on
the aspect that reproductive cloning (where partners are notrequired) goes against that given in the scripture which
specifies that the sperm is donated by the male and the female
contributes the egg (SGGS, p.1022---From the mother's egg
and the flow of semen of father, the Infinite God has created abeautiful body. The energy and all types of food have been
provided by You, the Creator, who pervades everywhere) andalso that conception is the moment or time of the entry of thesoul (SGGS, p.77---In the first watch of the night, O mymerchant friend, the Lord placed your soul in the womb. In thetenth month, you were made into a human being, O mymerchant friend, and you were given your allotted time toperform good deeds. You were given this time to perform gooddeeds, according to your pre-ordained destiny). This offers
contemplative reflections because in reproductive cloning
where conception or fusion of the gametes is lacking, how/when/if can then there be entry of the soul?
Assisted Suicide/ Euthanasia
The taking of a person’s life is considered a crime and sinin all religions and beliefs; no one has a right to give or takelife. It is generally accepted that birth and death are the mercyof the Creator (SGGS, p.151---By the Hukam of His Command
we come, and by the Hukam of His Command we go) and thisagain throws to the wind the issues of abortion and ESC
research. In the Sikh belief, death is the ultimate truth of life andis accepted as inevitable (SGGS, p.36---This world is an
illusion; people pass their life-nights sleeping; SGGS,p.15---Lifeand death come to all who are born. Everything here getsdevoured by Death).
The concept of suicide is also considered against the
Sikh tenets. If life cannot be created then how can death becontrolled? (SGGS,p.1329---No one can hold anyone back fromcoming; how could anyone hold anyone back from going? He
alone thoroughly understands this, from whom all beings come;all are merged and immersed in Him). Rather, suicide isfrowned upon and it is believed that the taking of one’s life is
not the end of one’s woes but further creates negative karmas
and one will have to re-live this life in the next one. Bhatia(1985) has observed that Sikhism propagates `Suicide in the.
face of misery and misfortune implies lack of faith in the
goodness and righteousness of God’. Against this backdrop,
the issue of assisted suicide also raises the same premise.
Euthanasia as an extension is also considered an interference
in God’s plan (Mansukhani, 1977). Since life is a present from
God (SGGS, p.575--- Blessed is human life, which is obtainedby virtuous actions. Human life is obtained only by the mostvirtuous actions; this body is radiant and golden), there is a duty
to live life in a responsible way and to respect it. Efforts have to
be made to get well and this includes getting medical treatment(Rao et al., 2005). Rather appropriate distinctions have to bemade between ending life and not artificially prolonging aterminalstate(www.bbc.co.uk/religion/ethics/euthanasia/sikh.shtml). Further
where people contemplate euthanasia, the Sikh reaction is toprovide such good care that euthanasia becomes anunattractive option. The given life should be preserved andlived as per the Guru’s tenets so that one is no longer trappedin the cycle of rebirths (SGGS, p.1096). The care of thewounded in the battlefield was initiated in the times of the tenthGuru, Guru Gobind Singh ji. In 1705, Bhai Kanhaiya wasadvised by him to care for the wounded soldiers, irrespective offriend or foe (Singh, 1992-99). Red Cross only started thisabout 150 years later. Hospice care for the destitute, theT

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mentally challenged and the handicapped, irrespective of caste,
creed or religion, is an integral part of the Sikh way of life toserve humanity. Bhagat Puran Singh’s efforts in 1947 initiatedfrom the care of a single leper. Singh (2000) christened him as
the ‘Bearded Mother Teresa of Punjab’.
Recombinant DNA technology (genetic engineering) used
for genetically modified (GM) organisms, is another moot pointin the Sikh way of life. Every being created by the Almighty is
unique (SGGS,p.1056---My True Lord God has staged a play.
He has created no one like anyone else .He made themdifferent, and he gazes upon them with pleasure; he placed all
the flavors in the body). Besides the uniqueness, each being
has the element of wholeness to it (SGGS, p.1412---All that the
Perfect Lord does is perfect; there is not too little, or too much).
Since each being is both unique and complete, there is no
scope for altering or modifying it. Let nature be unadulterated,neither altered by miracles nor by science. There is aresonance of this cautionary principle (SGGS, p.1375--Kabeer, the earth belongs to the Holy, but it is being occupiedby thieves). Further to this, the Almighty resides in everything(SGGS, p.922---This whole world which you see is the image of
the Lord; only the image of the Lord is seen. By Guru's Grace, I
understand, and I see only the One Lord; there is no one
except the Lord). Accordingly, the Almighty can be seen in His
creation and nature commands love; it is also to be revered
since it has been created by the Almighty (SGGS, p.150---The
Lord, by the Hukam of His Command, has created the entire
creation). Changing (harming) any part of it is hence contrary.
No thought of harm should be there if one has love for it
because the Almighty is immanent in the creation (SGGS,
p.1349---The Creation is in the Creator, and the Creator is in
the Creation, totally pervading and permeating all places). And
with this love for the Creator and creation comes self
realization- which is spiritual progress. Chahal (2005) has
posed some interesting queries: genetic engineering may effecta cure for a disease and so the person will not suffer from theassociated physical karmic effects of earlier deeds However if
there happen to be detrimental effects of such a therapy, canthen these negative effects again be considered as new karmic
effects? Does it mean that genetic engineering can alter
karma? Berry (c.f. Chahal,2005) too states that the acceptanceof the will of God means the acceptance of every condition as
created and willed by God. In this context, a child with anabnormality or disease is the result of the child’s and theparents’ previous karmas. Genetic engineering may wellprovide options but it is faith or belief which can aid in resolving
these conflicts.
Sikh Clergy and Bioethics
The Sikh religious authorities have generally remained
silent on science-related issues except for female foeticide (andinfanticide), sati (wife’s self-immolation on husband’s pyre to bewith him in the next world) and genital mutilation (Chahal,2004). The Sikh scripture mentions that the wife performing sati
falls into the cycle of rebirths (SGSS, p.185---Imitating what shesees, with her stubborn mind-set, she goes into the fire, She
does not obtain the Company of her Beloved Lord, and she
wanders through countless incarnations; SGGS, p.328--Without Truth, how can the woman be a true satee - a widow
who burns herself on her husband's funeral pyre?). The Sikhth
Gurus opposed sati during the 16 century - the third Guru,
Guru Amar Das ji specifically stopped the practice of sati andalso advocated widow marriages; in Punjab, this practice wasbanned in 1829 (c.f. Chahal,2004).
Circumcision is banned and the scriptures mention thatprinciples of self discipline should be one’s circumcision;
purifying the mind and keeping the body complete without
circumcision should be the code of conduct (SGGS, p.1084--Let your meditation beads be the subjugation of the ten senses.
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Let good conduct and self-restraint be your circumcision;
SGGS, p.477---Because of the love of woman, circumcision isdone; I don't believe in it, O Siblings of Destiny. If God wished
me to be a Muslim, it would be cut off by itself. If circumcision
makes one a Muslim, then what about a woman?).
The Sikh way of life further extols that each act should be
evaluated. It should be pursued only if good for a person’s life
or for humanity (SGGS, p.1410---O my mind, do not waver orwalk on the crooked path; take the straight and true path). Sikhclergy have now intensified efforts on a large scale to curb thepractice of female foeticide in the region. The Hindu clergy in
Banares in 2005 and the Sikh Clergy for the first time passed
an edict condemning female foeticide (Vedanti calls for drive
against female foeticide, 2003). In April 2006, the Sikh religious
authority, the SGPC (Shiromani Gurdwara Prabandhak
Committee, Amritsar)-SHRG (Sikh Human Rights’ Group, UK)UNESCO after deliberations in a seminar on “Female Foeticide”
have risen to the occasion and have mobilized funds to initiate
the Sikh clergy, NGOs and academicia to educate the rural andurban Punjabis for curbing the practice of female foeticide. Thelax attitude for implementation of the Prenatal Diagnostic Act
was also condemned. In UK, the leaders of the Sikh and otherfaiths, had written an open letter (Clerics' cloning plea to Lords,
2001) to the Lords urging them not to permit the creation ofembryonic clones. It mentioned that the ‘Sikh faith does not
specifically ban embryo research. But respect for life is central
and Sikh leaders feel parliament must be given more time to
examine the scientists' motives’.
It is a turning point for the clerics in all set-ups to criticallyexamine the current and future medical genetic advances given
the wider ramifications of bioethics in cross-cultural settings andin order to safe guard the beliefs of various communities. It isindeed high time also for the Sikh religious authorities, after
appropriate deliberations and debates with various strata ofsociety and in keeping with the Sikh code of conduct as given in
the SGGS and in the Sikh Reht Maryada (1945;1994), toformulate guidelines and directives on use and research
applications arising from embryonic stem cell research,
therapeutic cloning, ART, organ farming, designer babies,
genetically modified (GM) organisms, keeping in view that theseadvances encroach onto what has been created by nature andas ordained and watched over by the Almighty (SGGS,p.1185--The Lord Himself plays, and He Himself watches; the Lord
Himself created the creation; You alone know Your Creative
Power, O Lord; no one else knows it. He alone realizes You, O
my Beloved, unto whom You show Your Mercy). Brar (1998)
had pointed out that the current Rehit Maryada does notcontain answers to any of these and other quandaries besettingst
the Sikhs in the 21 century. The answers reside in the Living
Guru, Sri Guru Granth Sahib but since every Sikh has personal
interpretations and views on these topics, an updated Rehit
Maryada is required in order to avoid such a plurality and tofoster uniformity as per the Sikh doctrine.
The creator who created the world, He takes thought of it
as well (SGGS, p.466).Harmony with the eternal implies a life ofharmony with all existence. All life is interconnected; look at allexistence as one and undifferentiated; the same lightpermeates/penetrates all existence (SGGS, p.599---As
Gurmukh, look upon all with the single eye of equality; in eachand every heart, the Divine Light is contained.). In Sikh belief,
all creation has the same origin and ending. The humans musthave consciousness to guide themselves through life with love,compassion and justice (Posey, 2002; SGGS,p.1384---If thou
wouldst seek God, demolish and distort not the heart of any
individual). The Sikhs have awareness (Sikh Faith Statement,
2003) and believe that a sacred relationship between humans
and the environment is necessary for the health of our planet,
and for our survival. A new “environmental ethic” dedicated toconservation and wise use of the resources provided by a
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bountiful nature can only arise from an honest understanding
and dedicated application of our old, tried and true spiritual
heritage. Sikhism is foundationally ecosophical (Lourdunathan,2002). The term eco-sophism (the wisdom of the universe) is
appropriate as Sikhs believe that such wisdom is required forthe promotion of sustainable and peaceful ecology-more sosince the purpose of human beings is to achieve a blissful stateand be in harmony with the earth and all creation (SGGS,
p.1035). Sikh prayers also centre on the unity of mankind, andthe inseparable links of humans to nature (Rajwant Singh).
Furthermore, the acceptance of Hukam can provide solutions to
the problems besetting an individual and the world.
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Bhatia, M.S.(1985). Infidelity to Faith, Kanpur, Ellora Printers c.f. M. S.
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Chahal, S.K. (2005).Ecology Redesigning Genes: Ethical and Sikh
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Singh, K. (2000). The Father Teresa of Punjab In: The Tribune,
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web.worldbank.org/WBSITE/EXTERNAL/EXTABOUTUS/PARTNERS/E
XTDEVDIALOGUE/Development Dialogue on Values and Ethics Fès Forum 2005 (….Rajwant Singh brought the first Sikh voice tothe Festival with Sikh prayers centered on the unity of humankind,and man’s inseparable links to nature)
Sri Guru Granth Sahib (SGGS) Shiromani Gurdwara Parbandhak
Committee, Amritsar, India. SGGS, p.176---Gauree Gwaarayree,
Fifth Mehl:
In so many incarnations, you were a worm and an insect;in so many incarnations, you were an elephant, a fish and a deer.In somany incarnations, you were a bird and a snake.In so many
incarnations, you were yoked as an ox and a horse. ||1||Meet the
Lord of the Universe - now is the time to meet Him.After so very
long, this human body was fashioned for you. ||1||Pause||In so many
incarnations, you were rocks and mountains;in so many
incarnations, you were aborted in the womb;in so many
incarnations, you developed branches and leaves;you wanderedthrough 8.4 million incarnations. ||2||Through the Saadh Sangat, theCompany of the Holy, you obtained this human life.Do seva selfless service; follow the Guru's Teachings, and vibrate the Lord'sName, Har, Har.Abandon pride, falsehood and arrogance.Remain
dead while yet alive, and you shall be welcomed in the Court of theLord. ||3||Whatever has been, and whatever shall be, comes from
You, Lord.
No one else can do anything at all.
We are united with You, when You unite us with Yourself.Says Nanak,sing the Glorious Praises of the Lord, Har, Har. ||4||3||72||.
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The Dowry Prohibition Act of 1961 at: http://www.indialaws.info/.
The Hindu Property Act of 1956, The Hindu Succession (Amendment)
Act 2005, at: http://www.indialaws.info/.
The 1972 Medical Termination of Pregnancy Act in India at:
http://www.indialaws.info/.
The
National
Population
Policy(2000)
at:http://populationcommission.nic.in/hp.htm
The Orange County Register, 1998 (Jan.18,1998). The Great Divide
Both Abortion Foes And Abortion-Rights Supporters Say God Is On
Their Side.
January 18, 1998, Byline: Hieu Tran Phan Cited From : Vishav(World) Sikh News, 2, (No.2),2.
The
Prenatal
Diagnostic
Act,
1994,
Amended,2001.
at:
http://www.indialaws.info/.
UNEP/GC (United Nations Environment Programme Governing
Council).2001. Religions and environment. Extract from the Global
Ministerial Environmental Forum Policy Issues: Emerging Policy
Issues. Discussion paper presented by the Executive Director at the
21stSession(Nairobi,
5-9February2001),
at:www.bcca.org/ief/unepgc21.htm, In: Ethics for a Small Planet : A
Communications Handbook on the Ethical and Theological Reasonsfor Protecting Biodiversity
http://www.biodiversityproject.org/
http://www.biodiversityproject.org/EFSP%20Section%202.pdf
http://www.biodiversityproject.org/EFSP%20Section%206.pdf
Vedanti calls for drive against female foeticide, In: The Tribune,
Chandigarh, India, Monday, July 14, 2003.
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Eubios Journal of Asian and International Bioethics 17 (July 2007)120

her own life critically in order to identify itself with them(Frankfurt, Dworkin and Quante in Quante, 2002:174-196).
Thus an individual can develop an evaluative self-conception(Quante, 2002:177) which enables her to self-determine her
desires and check the authenticity of her own wants. Desires
and wants of an individual can only be authentic if they haveemerged without manipulative influence and in absence of selfdeception (Quante, 2002:180).
In the understanding of autonomy of act the external
factors are sufficient for the self-determination of an individual.
To be a self-determined individual according to the concept ofautonomy of person however, external as well as internal
conditions must be met. Furthermore a “biographic dimension”(Quante, 2002:179-181) is required to rule out an over-directedor self-manipulative origin, resp. motivation of the desires andwants of the individual. Whether the internal factors are
ensured can be judged directly by the individual concerned but
also indirectly, on the grounds of specific indicators, by otherpeople. The coherence of a personality throughout time, theindividual’s background of socialisation, her articulated relation
to herself or even neuro-scientific findings about the individual’s
brain can provide information about the individual’s ability ofself-determination. If the personality and the way of life of anindividual do not appear to be coherent, if her socialisation ∗ has
not been shaped by the promotion of autonomy, but by the
manipulation of her self in favour of over-directed purposes, if
the individual has a disturbed self-relation, then this might
indicate the individual’s disability of self-determination. If
relevant brain areas show lesions this might also be anindication for restrictive self-determination abilities.
Autonomy and authenticity are closely linked concepts.
Authenticity means to discover and tread one’s own paththrough life in a coherent manner and is therefore a form ofexistence of autonomy. A reflexive and a pre-reflexive kind ofauthenticity can be identified (Quante, 2002:192-196). Both,reflexive and pre-reflexive authenticity is immanent to beconstitutive for an evaluative self-relation that means
constitutive for personality (Quante, 2002:193). Pre-reflexive
authenticity refers to a primordial, yet unreflecting connection
resulting from external factors such as socialisation as well asinternal, psychological factors; a coherence begetting concord
with one’s own self. Because pre-reflexive authenticity founds
the self of a person reflexive authenticity refers to it as thecondition sine qua non for the possibility of self-determination.
Reflexive authenticity and autonomy are congruent: An
individual is authentic if and only if she has ‘adopted’ all her
desires and convictions as her own by identifying with them
(Quante, 2002:193). As pre-reflexive authenticity already entails
the moment of the evaluative self-relation and as it were fosters
identity-establishing, reflexive authenticity, which itself makes
personality a subject of discussion and critically reflects its
convictions, thus must be existent as ability, but it need not be
continually materialised to generate personal autonomy(Quante, 2002:192-195). The present study takes theinterpretation of self-determination as just referred to as abasis.

Psychopharmacological
Enhancement: Selfdetermination or selfmanipulation?
-Christina Pinsdorf
Member of the Junior Research Group of the Institute for
Science and Ethics, Bonner Talweg 57, 53113 Bonn, Germany
Email: pinsdorf@iwe.uni-bonn.de
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1. Introduction
The term psychopharmacological enhancement refers to
the current trend of self-optimising one’s cognitive abilities andpsychic well-being via psychotropic drugs without the presenceof a medical indication. The so called cognitive enhancement
and mood enhancement mark two paradigmatic types ofpsychopharmacological enhancement. Methylphenidate is a
substance frequently used for cognitive enhancement
purposes, which stimulates the central nervous system. Thischemical agent is often referred to as Ritalin and was primarily
used in the treatment of ADHD (Attention-Deficit-HyperactivityDisorder). The chemical agent Fluoxetin is an anti-depressantthat belongs to the class of serotonin-reuptake-inhibitors(SSRI‘s) and is frequently used for mood enhancement. In
Germany Fluoxetin is known by its brand name Fluctin, in the
USA it is mostly referred to as Prozac. Fluoxetin was primarily
used for the treatment of depression.
In the following cognitive enhancement and moodenhancement will be assessed in respect to their ability ofensuring the self-determination of individuals. It will be
scrutinised whether psychopharmacological enhancement via
Prozac, resp. Ritalin is founded on an autonomous decision of
the individual, whether it is a means for self-determined or selfmanipulated self-creation and whether its outcome strengthensor erodes the individual’s autonomy. For these considerations it
is crucial to understand two differing concepts of authenticity –one of which is closely linked to the concept of autonomy andone of which almost contradicts it.
2. Disambiguation
The term “self-determination” derives from the Greek term
“autonomy”. With its components ‘autós’, ‘self’, and ‘nómos’,‘law’, it means ‘the right of self legislation’, or more general: ‘theright to live in accordance to one’s own law’ (Von UngernSternberg, 1990:9). This political concept of autonomy ∗ ,decisively restricted to autonomy of act, is broadened to an
ethical dimension that differentiates between autonomy of act
and autonomy of person, as a result from questioning theperson, who shall live according to its own law, and fromquestioning how this is workable. Self-determination becomes a
moral ideal grounding on the ability or will of individuals to selfdetermination that gets manifest in decisions and acts (Quante,
2002:174). The ability to self-determination is constituted byinternal factors such as self-awareness, rationality, reflecting
power, self-knowledge, absence of inner forces, and external
factors such as an autonomy encouraging socialisation,
absence of external forces, etc. The internal prerequisites for
self-determination, especially the constitutive moment of selfknowledge, are based on the idea of an authentic personality, atrue self. For the desire, the will, the act, finally the life of anindividual to be self-determined firstly the individual mustpossess the ability to reflect her own desires, volitions, acts and
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In the following the term “autonomy“ and “self-determination“ are usedsynonymously.
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3. Representation of arguments
In the controversial debate on Ritalin and Prozac ascommon means of cosmetic psychopharmacology – the former
aiming at cognitive enhancement, the latter aiming at moodenhancement – the authors Peter Kramer and Carl Elliott adopt∗

The function of socialisation in relation to an individual’s selfdetermination is problematic: On the one hand socialisation is ofconstitutive function for autonomy, on the other hand it may containautonomy-endangering forces. However in general, one can distinguishbetween an autonomy fostering socialisation and an up-bringing that
leads to independence, critical reflexion, etc. and an autonomy
undermining socialisation. See also Quante and Stier.
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Eubios Journal of Asian and International Bioethics 17 (July 2007)
opposing positions. Both critically examine the phenomenon ofso called life-style-drugs and both have shaped the debate witha lasting effect. Particularly on the grounds of a differing
concept of authenticity, Kramer and Elliott elaborate distinct
attitudes towards the use of psychotropic drugs forpsychopharmacological enhancement. Referring to a rather
traditional interpretation of the concept of authenticity as his
starting point, Elliott develops a critical stand towards
psychopharmacological enhancement, whereas Kramer, on thebasis of a rather post-modern and liberalist interpretation ofauthenticity, tends to support the use of psychotropic drugs forenhancement purposes. As set forth earlier, the concepts ofauthenticity and self-determination are intertwined and mutuallydependent ideas. The following analysis intends to investigate
both concepts of authenticity underlying the arguments for andagainst psychopharmacological enhancement. On three levels,
motivation, means and result, the arguments shall be outlined
thus extrapolating conclusions from the concepts of authenticity
to the concepts of self-determination.
A. Self-determination via the up-to-date interpretation ofauthenticity
According to Kramer and other contemporary authors there
is no authentic self one could act appropriately to or one could
be true to. In accordance with this view the traditional ideal of
an authentic self implies the “misleading image of the self as“given”, static, or something there to be discovered” (DeGrazia,
2004:36). Instead Kramer and like-minded people intend to
replace this metaphysical anchoring of the authentic self with amore comprehensible and liberalising understanding ofauthenticity. For them every individual creates her own
narrative and can rewrite her life story at any time, because theindividual herself is the director as well as the actor of her own
life project. In contrast to self-fulfilment, self-creation (DeGrazia,
2004:33-41) is an authentic process. The assumption that
personality traits were fixed components of the individual isrejected. Whether certain characteristics are definite andintrinsic of someone rather depends on the individual and her
identification with them. Personality traits can only be authentic
if the individual concerned autonomously identifies herself withthem (DeGrazia, according to DRZE-Sachstandbericht,
2002:69). One is free to change one’s sense for one’s own
identity at any time and one can always assess independently
how much one values one’s present personality (Gesang,
2006:10) or to what degree one wants to alter it. The view that
individuals do not possess a substantial identity, but perform
identity appropriately to different social roles, relates to the shiftof the postmodern age.
“With this shift has come a far more positive take on thehealthiness and morality of self-transformation. Not only can wechange our identities, it is suggested, we do it all the time. And
we ought to be glad, because this kind of plasticity is healthier,more honest, more apt to bring us happiness” (Elliott, 2003:47).
If identity is rather relative and malleable, the individual isrelieved of the metaphysical pressure which imposes on her an
ideal of being accordingly to her authentic self. This should
imply that the individual is no longer damned to endless selfreflection and does no longer have to participate in an infinite
regress of self-analysis. According to the up-to-dateinterpretation of authenticity the individual may just be happy
without being compelled to justify her happiness referring backto her authentic self.
In modern society healthiness is one of the most strived forgoods and as happiness results from psychological well-being it
is considered to be healthy. Melancholy and alienation on theother hand are rooted in psychological indisposition. If they are
ascribed intrinsic normative value this is due to a social
construction whose valuing stems from an arbitrary connection
made between melancholy and creativity or insightfulness. The

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identification of melancholy with profundity and happiness withsuperficiality is, according to Kramer, arbitrary and bases on an
unwarranted “aesthetic valuation of melancholy” (Kramer,
2004:49). The topical definition of authenticity no longer
focuses on the discovery of the self, but emphasises theprocess of self-designing. Resulting from this premise is anunderstanding of self-determination that solely addresses thenotion of freedom of action, namely the absence of exterior
forces limiting the process of self-creation, as important. From
this point of view psychopharmacological enhancement,
authenticity and self-determination build a symbiotic alliance:
freed from metaphysical burden and constraints of a static self,
the human being is not forced to enhance herself but can freely
choose to do so (Gesang, 2006:10) via psychopharmacologicalenhancement thus self-determiningly creating an authentic self
and producing psychological well-being and happiness.
B. Self-manipulation via adulteration of the concept ofauthenticity
Authenticity is a traditional concept on which numerous
religiously or politically motivated approaches to self-fulfilment
are based. Therewith self-fulfilment does not become a relativeor hollow phrase there must be an authentic self that can bethfulfilled. Especially the individualism burgeoning in the 18
century emphasises the uniqueness of every human being andbestows upon everyone the mission to live a life of selffulfilment. Self-fulfilment unfolds a normative character andauthenticity becomes a moral ideal: “To thine own self be true!”
This “articulates perfectly the notion of authenticity as a moral
ideal: the idea that we each have a way of living that is uniquely
our own, and that we are each called to live in our own way
rather than that of someone else” (Taylor according to Elliott,
2003:29).
Also today authenticity counts to be constitutive for selffulfilment and a successful life. For many people authenticity is
an important maxim for action because only an authentic life
leads to a fully lived and happy life everyone strives for. “An
ethic of authenticity says that in order to answer the question,“How should I live?” I will have to look inward, because there isno single universal way of living a meaningful life” (Elliott,
1998:181). Elliott registers a strong wish for authentic selffulfilment in many of his patients. Oftentimes his patients referto the concept of authenticity when they intend to unfold theirtrue self with the aid of psychotropic drugs which for them are“tools of self-discovery and self-fulfilment” (Elliott, 2003:30).
Many people explain their use of mood enhancement with their
existential desire to be authentic, to be themselves. Before
considering to take psychotropic drugs they say that it feels as
if their true “I” was covered or suppressed by unrequested
attitudes such as sadness, shyness or anxiety. Likewise usersof cognitive enhancement justify their decisions with their will to(mostly job-related) self-fulfilment. In both cases the intention isto set the true self free by means of psychopharmacologicalenhancement but the aim is decisively not to betray oneself orothers. However, the personality change induced bypsychotropic drugs seems to “defy an ethic of authenticity”(Elliott, 1998:182) and it appears to be paradox to base thesekinds of personality transformations on the moral ideal ofauthenticity. But patients insist on their account that they sufferfrom their melancholic or alienated character and want toseparate from it as they are actually different. They seek torevealtheiractualself
via
psychopharmacologicalenhancement. People who validate their efficiency to be
insufficient for accomplishing their authentic self-fulfilment opt
for psychopharmacological enhancement as well. Either group
employs the word authenticity as “a way to describe selfchange without betraying a complex moral ideal” (Almodovar
according to Elliott, 2003:30).
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Although Elliott estimates the desire of his patients forauthentic self-fulfilment to be urgent and appreciates the“extraordinary amount of effort, pain, and risk that go into theseself-transformations” (Elliott, 2003:39) he still considers theautonomy of his patients to be endangered. Elliott does not
reject the use of psychoactive drugs for the purpose of selffulfilment eo ipso but judges it very sceptically in our culture thatsimultaneously imposes the ideal of an authentic self and theideal of a “flexible, adaptable identity” (Elliott, 2000:8).
From Elliott’s point of view for our society only certain
traits, in concrete those being connected with psychologicalwell-being and professional success, are of normative value.
Thus people are always endangered to be induced to aunilateral definition of self-fulfilment by the force of external
authorities (Taylor, 1999:126). Happiness, extraversion,
spontaneity and similar traits of personality are considered to
be precious and worthwhile in western society, as they arelikely to lead to social as well as professional success – themodern equivalent for a fulfilled life. Sadness, melancholy,shyness or alienation on the other hand are unfeasible if notdebilitating traits in our society as they are unlikely to promotesocial and job-related success. The decision towards
psychopharmacological enhancement thus originates in the
conclusion of people who think that if I am “alienated,depressed, or anxious, I can’t be completely fulfilled” (Elliott,
2003:300). This attitude produces the adulterated concept ofauthenticity and self-fulfilment that equates ‘being authentic’with ‘being happy and successful’. “Substitute self-fulfilment forhappiness and you get something of the ethic that motivatesthe desire for enhancement technologies” (Elliott, 2003:303).
The identification of authenticity with happiness is fatal for Elliottbecause it undermines the quintessence of the concept ofauthenticity. From Elliott’s point of view it is wrong as such toequate the authentic self with the happy self. The moral statusof authenticity as an ideal, as a desirable form of life is notconstituted by a principle of happiness through cheerfulness but
by a principle of felicitousness through self-awareness.
Therefore it is “not simply the sense that an authentic life is ahappier life; it is the sense that an authentic life is a higher life.
Higher because it is a life of fulfilment, a life in which you know
who you are and live your sense of yourself” (Elliott, 2003:39).
An authentic reaction for instance, is a for a certain situation
adequate reaction. “Some situations call for depression oralienation or anxiety. Some things call for fear and trembling”(Elliott, 2003:157). Does one witness the death of a loved one
the feeling of sorrow, grief and loss can be authentic andprecious. Also less existential experiences in everyday life cancause sadness or melancholy, such as an argument or a reporton concussive fates in the world news. Moreover the feeling of
personal, cultural or existential alienation can be an adequate
and authentic response to the present living conditions: “Someexternal circumstances call for alienation” (Elliott, 2000:8).
The alleged agents of self-fulfilment who wish to actualise
their authentic self while having recourse to psychotropic drugs,
are impelled by the tyranny of happiness where “happiness is
not just your right, it’s your duty” (Elliott, 1998:187). Within thetyranny of happiness optimisation is defined unilaterally – bettercan only mean happier and more successful. At this the moral
ideal of authenticity is falling by the wayside. Individuals are nolonger called to live in accord with their true self, but to live inaccord with the claims of society and adopt the traits thatsociety values. The moral and qualitative virtue of authentic
demeanour has given way to an economical and quantitative
valuation.
Due to the one-sided definition of optimisation,enhancement measures oftentimes do not optimise – in the
traditional sense of the word – moods or cognitive skills but
transfer one normal trait into another normal, but dissimilar trait(Elliott, 2003:51). Thus psychotropic drugs do not just augment

the psychological level of efficiency but alter personality traits.
Prozac is considered to produce “the most extensive
transformations of personality” (Edwards, 2004:36), rendering a
shy person outgoing and extraverted or changing a rather
inflexible and serious person into a spontaneous and easygoing one. Are these examples of authentic self-fulfilment? The
alteration of character traits represents a significant intervention
into one’s own self, one’s own identity. According to Elliottthese interventions of external forces are hardly able to lead toan authentic, hence self-determined self-creation, as theyground in a distorted concept of authenticity. On the one hand
this kind of self-creation does postulate an authentic essence
within the human that ought to be actualised but on the other
hand it renders its very essence senseless as it defines ex ante
what the outcome of an authentic self-creation must be like - towit happy and successful. The desire of people to authenticallycreate themselves is exploited by lobbies and transformed into
a scurrile mixture. “The commercial appeal of revealing the true
self depends not only on the idea that you have a true self thatcan be revealed by a drug, but also that you will be happier andbetter off revealing it” (Elliott, 2003:76). In other words it is nolonger the authentic self that is revealed via authentic selfcreation but it is a happy self with a successful carrier. Selfcreation in this sense leads to a self that is over-directed and fix
from the first and does not cause a self-determined authentic
self pursuant to the nature of the individual. As the idea of an
identification of an authentic and good life with a happy andsuccessful life manifests itself, people are decreasingly awareof the commercial misuse of the traditional concept ofauthenticity. What constitutes the traditional idea of authenticity
is the existence of a unique self that can be realised andcreated. Reflective introspection is a necessary condition toself-determiningly and authentically realise and shape theunique self. The moral ideal of authenticity bases on themethod of introspection, of looking inward to discover who you
really are for the sake of avoiding manipulation of the self byexternal forces. Today, however, the answer to the question
who one really is and how one can live authentically according
to ones individual self is not given from the inside of theindividual but from the outside. Authenticity is not selfdetermined but external-determined. Instead of listening toones inner voice in order to understand who one is and wants
to be, one looks outside to receive the uniform instruction toremain or become happy and successful. The result is a, to theprevailing trends of society, complying authenticity that
contravenes the essential idea of authenticity. Happiness andsuccess may arise from an authentic self-creation; they do nothave to arise from it however. Being happy or successful are
possible states of an authentic self. The ideal consequence ofan authentic life is felicitousness which may contain happinessas well as sadness. The ideal consequence of an authentic life
is wholeness and not restriction towards one mood or one
status of career. To be momentarily happy does not necessarily
require authentic self-creation, to be blissfully happy, however,does. “True happiness cannot be attained without fulfilment,
and fulfilment requires being true to that inner voice” (Elliott,
2003:33), felicitousness necessitates authenticity. In our society
felicitousness as the ultimate goal of human existence issuperseded by professional success actualised in happiness.
The good life is defined by a twofold criterion that combines
happiness and profession. If, and only if you enjoy it, “tosucceed at work is to succeed at life” (Elliott, 2003:153). For therealisation of felicitousness introspection and reflection are
most likely the adequate means. For the actualisation of
professional success and happiness the means are rather“Ritalin to improve our attention and concentration” (Elliott,
2003:153) and Prozac to facilitate blithe cheerfulness. Although
the means and the interpretation of the ends are different, both
approaches claim to aim for the authentically fulfilled, the goodEubios Journal of Asian and International Bioethics 17 (July 2007)
life. For the latter concept the use of psychoactive drugs might
be highly recommendable to induce a meaningful and authentic
life but in order to realise the moral ideal of authenticity and astate of eudaimonia the use of psychoactive drugs appears to
be at most the ultima ratio.
The use of psychoactive drugs might have its raison d’être
if it only ceased to anchor its motivation in the traditional
concept of authenticity. If users of psychoactive drugs
explained their enhancement with the desire to be happy andsuccessful at work instead of justifying it in reference to therealisation of their authentic self, this would be more honest andmore authentic. Still it would not be self-determining to use
Ritalin and Prozac for the sake of accomplishing fulfilment, as
the principle of autonomy is closely linked to the principle ofauthenticity. Merely a theoretical dimension of selfdetermination may be adjudicated to those who voluntarily andconsciously, hence autonomously decide to restrain their selfdetermination in order to function according to the normative
dictate of society. However, many patients seem to delude
themselves and others when referring to their desire ofauthentic self-creation that can only be realised under thechemical influence of their neurotransmitters. Kramer’s patient
Tess asserts she only is herself while taking Prozac. But Tessis a grown person – who was she all her life if not herself?
(Kramer, 1997:19). Rather than Tess having found herauthentic self it seems that she finally found a way to live in
comfort. Likewise adults in certain positions – for instance apressuring profession – consuming Ritalin seem to be
motivated to enhance themselves by the desire to fulfil theirsocial function rather than by the desire to authentically selfcreate.
4. Conclusion
Under the condition of self-reflexion, introspection, criticalassessment and a further integration within the realm of atherapeutic approach or the like, an individual may be able toamend its project of authentic self-creation, resp. of selfdetermined self-fulfilment, with the use of psychoactive drugs.
However, even if there is the possibility of Ritalin or Prozac
to ameliorate the condition of individuals it ultimately
exponentiates the causale that led to the circumstance of adecimated well-being which again leads to the use ofpsychotropic drugs.
Psychopharmacological enhancement technologies “mayrelieve individual suffering, but in so doing they make the social
problem even worse” (Elliott, 2003:190). This phenomenon that
undermines the autonomy of individuals further thanstrengthening it is referred to as “cultural complicity” (Little in
Elliott, 2003:190). The desire of healthy individuals forpsychopharmacological enhancement results from “social
values and attitudes that ought to be changed. Yet not only doenhancement technologies nothing to improve those attitudes,
they may also make them worse” (Elliott, 2003:190). Due to theuse of psychopharmacological enhancement the problematic
values of society and the constrained concept of authenticity
get affirmed. The more individuals concede the social pressure
and accommodate themselves to the ideals imposed uponthem by society, whom they can only do justice to with the aidof psychotropic drugs, the more they reinforce a “cultural framethat allows for narrower and narrower conceptions of authentic
selves and life projects” (Parens, 2004:32). If individuals judge
their sadness or shyness to be a deficiency that they have to
respond to with the employment of psychoactive drugs, they
only interfere with the biochemical balance of their brain but
leave the reason why sadness and shyness are judged to be
deficient untouched and do not question the normative
valuation. Equally is the matter with individuals judging theirproductive capacity to be insufficient. Instead of lowering
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accommodate and increase their efficiency via psychotropic
drugs. In a society exclusively oriented at prospective economic
expansion there is no limit of performance self-determined byindividuals.
At
first
the
performancelevelofpsychopharmacologically enhanced individuals may exceed theperformance standard but over time this upper limit again
becomes the status quo that is regarded as imperative tosurpass. Exemplary, today’s consume of caffeine barely leads
to an increase in the performance level but is rather necessary
to keep the performance standard.
In our society the motivation for psychopharmacologicalenhancement rather originates in a gentle force of the living
conditions than in the self-determination of individuals.
However, freedom of action is granted in terms of the decision
making whether to accomplish cognitive or mood enhancement,
the existence of freedom of will, resp. personal freedom is not
only not ensured, but also severely threatened. There are no
external forces that constrain actions directly, yet there is astrong manipulation of will that should not be underestimated. ∗Basic requirements for a self-determined, personal autonomy
safeguarding use of psychopharmacological enhancement
could be an equitable consideration of alternative treatment
options, the embedding of enhancement in an integrated
approach etc., but first and foremost a moral ideal ofauthenticity needs to be socially established which does not
foster a partial pressure of normalisation. Suffering fromalienation, a typical motivation for mood enhancement, andsuffering from pressure to perform, a typical motivation for
cognitive enhancement, are exemplary phenomena of oursociety in which authenticity has become a hollow phrase. A
biased concept of authenticity that only values people’s striving
for cheerfulness and professional success fails to do justice tothe central idea of authenticity namely that every individual isunique and should live according to her very own self. A striving
for felicitousness can implicate the striving for happiness(amongst others) as well as a striving for the good life canimplicate the striving for professional success (amongst others).
The traditional moral ideal of authenticity leaves room for a selfdetermined interpretation and creation of the self and its life,
whereas the stinted concept of authenticity reduces human
striving to happiness and professional success. A self-creationthat intends solely psychological well-being but completely
neglects well-being of the soul can, neither via
psychopharmacological enhancement, lead to a selfdetermined fulfilment of human life.
Psychopharmacological enhancement as a meansintervening in the bio-chemical balance of the brain is rather
unapt to empower an individual to self-determined self-creation.
On the one hand it is neutral as a bio-chemical means anddraws its normative value from its implementation in the actual
society. On the other hand due to its bio-chemical bias it after
all does not treat the person as a whole but only concentrates
on its brain function thus failing to support the selfdeterminationofpersons.
Theargumentthat
psychopharmacological enhancement could be used selfdeterminingly and if it was not it would not be due to the natureof the means but due to the nature of the particular society
incompetent to use it accordingly, however is not supportive of
the use of psychopharmacological enhancement within oursociety. To a greater degree it postulates the modification of oursociety. Soma, Brave New World’s ultimate lifestyle-drug, is asa bio-chemical substance also neutral yet it constitutes thefoundation of the well known dystopia. To warrant anautonomous use of psychopharmacological enhancement,
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Here it can only be pointed at the bondage of public discourse, or theinternalisation of demands from lobbies, such as psychiatrists, healthinsurances and the pharmacological industry via direct-to-consumeradvertising in journals, television commercials, on the internet or radio.
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inevitably the necessary societal parameters must be
established first.
Since a modification of overall-societal conditionscommand a long process and the healthy yet suffering
individuals should not per se be denied access to
psychopharmacological enhancement, elucidation-practices
such as the - so called “cognitive psychotherapy” ∗ - represent
a first step towards a self-determined comportment withpsychopharmacological enhancement.
As long as psychopharmacological enhancement ismotivated by gentle forces of society it is rather externaldetermined than self-determined. It is actually fear-determinedby the worry to become redlined from society and to fail with therealisation of a valuable life, namely a happy carrier.
TPF

FPT

(Further) Readings
Bayertz, K., Schmidt, K. W. (2006): ““Es ist ziemlich teuer, authentischzu sein...!“ Von der ästhetischen Umgestaltung des menschlichen
Körpers und der Integrität der menschlichen Natur“, in: (Hg.) Ach, J.
S., Pollmann, A., “No Body is Perfect“, Transcript Verlag, Bielefeld,
43-63.
Bollag, E. (2002): “Selbstwahrnehmung als eine Voraussetzung für
Selbstbestimmung und Begegnungsfähigkeit – Schritte zu einer
Befreiungspädagogik, die den Körper integriert“, in: (Hg.) Bartmann,P., Hübner, I.,”Patienten Selbstbestimmung. Paradigmenwechsel undHerausforderung im Gesundheitswesen“, Neukirchener Verlagshaus,
Neukirchen-Vluyn, 197- 209.
Bostrom, N., Sandberg, A. (2006): “Cognitive Enhancement: Methods,
Ethics, Regulatory Challenges”, www.nickbostrom.com/coqnitive. pdf,
1-33.
Chambers, T. (2004): “Prozac for the Sick Soul”, in: (Hg.) Elliott, C.,
Chambers, T., “Prozac as a Way of Life“, The University of North
Carolina Press, USA, 194-206.
DeGrazia, D. (2004): “Prozac, Enhancement, and Self-Creation“, in:(Hg.) Elliott, C., Chambers, T., “Prozac as a Way of Life“, The
University of North Carolina Press, USA, 33- 47.
Edwards, J. C. (2004): “Passion, Activity, and the Care of the Self:
Foucault and Heidegger in the Precincts of Prozac“, in: (Hg.) Elliott,
C., Chambers, T., “Prozac as a Way of Life“, The University of North
Carolina Press, USA, 59-71.
Elliott, C. (1998): “The Tyranny of Happiness: Ethics and Cosmetic
Psychopharmacology, in: (Hg) Parens, E., “Enhancing Human Traits:
Ethical and Social Implications“, Georgetown University Press,
Washington, 177-188.
Elliott, C. (2003): “Better than Well. American Medicine Meets theAmerican Dream“, WW Norton, London.
Elliot, C. (2004): “Introduction“, in: (Hg.) Elliott, C., Chambers, T.,“Prozac as a Way of Life“, The University of North Carolina Press,
USA, 1-18.
Epd (2007): “Studie kritisiert Ritalin-Vergabe“, in: “Die Welt“, 02.
Februar 2007, Jg. 62, 4.
Flower, R. (2004): “Lifestyle drugs: pharmacology and the social
agenda“, in: TRENDS in Pharmacological Sciences, Vol. 25 No. 4,
April 2004, 182-185.
Fuchs, M., Lanzerath, D., Hillebrand, I., Runkel, T., Balcerak, M.,
Schmitz, B. (2002): “Enhancement. Die ethische Diskussion überbiomedizinische Verbesserungen des Menschen“, in: drzeSachstandberichte 1. Deutsches Referenzzentrum für Ethik in den
Biowissenschaften, Bonn, 59-71.
Funk, V. (2007): “Mediziner wollen Pharma-Werbung einen Riegel
vorschieben. Neue Initiative fordert Verbot von Vertreter-Besuchen in
Praxen / Kassenärztliche Bundesvereinigung hält Vorstoß für
unrealistisch“, in: “Frankfurter Rundschau“, 20. März 2007, 4.

∗During a cognitive psychotherapy an individual is offered the relevant
information concerning enhancement technologies, fathoms where her
desire for enhancement stems from, is enabled to evaluate thecoherence of her life-plans from an inner and outer perspective at thesame time, learns to reflect her desires. Finally the individual should
know whether she can autonomously identify herself with her desire,whether her desire belongs to her authentic and self-determined self orwhether it should be rejected. See Brandt in Gesang, 12.
TP

PT

Gesang, B. (2006): “Enhancement“ zwischen Selbstbetrug und
Selbstverwirklichung“, in: Ethik Med 2006, 18:10-26.
Healy, D. (2000): “Good Science or Good Business?“, in: Hastings
Center Report, 30, no. 2 (2000), 19-22.
Herrmann,B.
(2006):“Schönheitsidealundmedizinische
Körpermanipulation. Invasive Selbstgestaltung als Ausdruckautonomer Entscheidung oder “sozialer Unterwerfung“?“, in: Ethik
Med 2006, 18:71-80.
Kaupmann, S. (2006): “Medizin für die Kinderseele boomt“, in: Spiegel
Online, 06. Januar 2006, 10:18.
Kettner, M. (2006 a): ““Wunscherfüllende Medizin“ zwischen Kommerz
undPatientendienlichkeit“, in: Ethik Med 2006, 18:81-91.
Kettner, M. (2006 b): “Selbstbestimmung. Das latente Thema derWillensfreiheitsdebatte“, in: (Hg.) Fink, H., Rosenzweig, R., “Freier
Wille – frommer Wunsch? Gehirn und Willensfreiheit“, mentis Verlag,
Paderborn, 205-217.
Kramer, P. D. (1997): “Listening to Prozac“, Penguin Books, New York.
Kramer, P. D. (2004): “The Valorization of Sadness: Alienation and the
Melancholic Temperament“, in: (Hg.) Elliott, C., Chambers, T.,“Prozac as a Way of Life“, The University of North Carolina Press,
USA, 48-58. Lanzerath, D. (2003): “Krankheitsbegriff undZielsetzungen der modernen Medizin – Vom Heilungsauftrag zur
Antiaging-Dienstleistung?“, in: “Gesundheit und Gesellschaft“,
Ausgabe 3/2003 (Juli), 14-20.
Mertens, M. (2006): Der optimierte Mensch“, in: “General-Anzeiger“,
29./30. April 2006, 6.
Moynihan, R., Cassels, A. (2005): “Selling Sickness. How Drug
Companies are Turning Us All into Patients“, Allen&Unwin, NSW,
Australia.
Parens, E. (2004): “Kramer’s Anxiety“, in: (Hg.) Elliott, C., Chambers,T., “Prozac as a Way of Life“, The University of North Carolina Press,
USA, 2 1-32.
Quante, M. (2002): “Persönlichkeit und Autonomie“, in: “Personales
Leben und menschlicher Tod. Personale Identität als Prinzip derbiomedizinischen Ethik“, Suhrkamp, Frankfurt am Main, 174-196.
Rauchfleisch,U.
(1990):“Mündigkeit
desKlientenbei
testpsychologischen Untersuchungen und in der Psychotherapie“, in:(Hg.) Battegay, R., Rauchfleisch, U., “Menschliche Autonomie“,
Vandenhoeck & Ruprecht, Göttingen, 150-166.
Schleim, S. (2005): “Dragee zum Glück?“, in: Gehirn&Geist, 12/2005,
46-5 1.
Silvers, A. (1998): “A Fatal Attraction to Normalizing : Treating
Disabilities as Deviations from “Species-Typical“ Functioning“, in:(Hg.) Parens, E., “Enhancing Human Traits: Ethical and Social
Implications“, Georgetown University Press, Washington, 95-123.
Squier, S. (2004): “The Paradox of Prozac as an Enhancement
Technology“, in: (Hg.) Elliott, C., Chambers, T., “Prozac as a Way ofLife“, The University of North Carolina Press, USA, 143-163.
Stier, M. (2006): “Ethische Probleme in der Neuromedizin. Identität undAutonomie in Forschung, Diagnostik und Therapie“, Campusverlag,
Frankfurt am Main.
Taylor, C. (1991): “The Sources of Authenticity“, in: “The Ethics ofAuthenticity“, Harvard University Press, USA, 25-29.
Taylor, C. (1999): “Der Irrtum der negativen Freiheit“, in: “Negative
Freiheit? Zur Kritik des neuzeitlichen Individualismus“, Suhrkamp,Frankfurt am Main, 118-145.
Von der Weiden, S. (2007): “Pillen für den Zappelphillipp. Sogar
Erwachsene schlucken inzwischen Arzneien gegen ADHS –Nachfrage nach Ruhigstellern ist ums 120-Fache gestiegen“, in : “Die
Welt“, 08. März 2007, 31.
Von Ungern-Sternberg, J. (1990): “Entstehung und Inhalt des Begriffs“Autonomie“ in der griechischen Antike“, in: (Hg.) Battegay, R.,
Rauchfleisch, U., “Menschliche Autonomie“, Vandenhoeck &Ruprecht, Göttingen, 9-25.
Walcher-Andris, E. (2006): “Ethische Aspekte des pharmakologischen“cognition enhancement“ am Beispiel des Gebrauchs von
Psychostimulanzien durch Kinder und Jugendliche“, in: Ethik Med
2006, 18:27-36.

Eubios Journal of Asian and International Bioethics 17 (July 2007)

Respecting Vulnerable
Persons- Ann Boyd, Ph.D.
Biology Department, Hood College, 401 Rosemont Ave,
Frederick MD 21701, USA
Email: boyd@hood.edu
Regulatory and ethical guidelines for human researchemphasize protection of research subjects. The Nuremberg
Code, Helsinki Accord, and CIOMS guidelines consistently
insist that each person enrolled as a subject in research giveinformed consent. Based on a free and informed choice toparticipate, the consent document describes the clinical trial indetail. Principal investigators make efforts to disclose all risks
and benefits, and ethical oversight committees seek to ensurethat subjects have access to all relevant information. Using
principles of autonomy, beneficence, and justice, ethicaloversight members work in corporation with clinical trial
personnel to ensure that the subjects enrolled in the research
are respected as moral agents who freely choose to participate.
The autonomy principle applied in the consent process
and validated by the informed consent document assumes thatthe individual subjects are fully competent to assess the value
and validity of the research; that they understand the risks andbenefits, and all persons in the geographical location of the trial
have fair and equal access to participation. By contrast,
persons without the attributes necessary to satisfy ethicalnorms are considered vulnerable and due extra protection.
Prisoners, because of their limited freedom, as well as persons
with limited capacity, are examples of vulnerable persons.
Protecting subjects becomes all the more imperative when theircapacities are limited or compromised. Such protection requiresa degree of paternalism that is unavoidable in human research
ethics while respect for persons emphasizes autonomy.
In the doctor-patient relationship, the physician has skill
and knowledge needed by the patient making the relationshipinherently unequal. The doctor offers treatment options and thepatient agrees to the recommendation or rejects it. Accepting or
rejecting the recommendation is an exercise of autonomy by
the patient whether or not it is in the best interest of the patient.
If a child needed medical care and parents refused to allow thechild treatment, legal recourse is an option. In clinical research,
researchers function as physician and scientist. The bestinterest of the patient can putatively be at odds with theresearch goals. Research ethics review boards are charged
with protecting human subjects from unnecessary risk whileallowing some freedom and autonomy of the individual subject
in the process of informed consent. Necessarily then research
ethical oversight functions in adialectic of autonomy andpaternalism.
Autonomy vs. Paternalism
Freedom and competent reasoning provide thefoundation for autonomy. A moral agent chooses an action
consistent with his/her normative values in a process of selfgovernance. Autonomy implies and expects reason to empower
individual choice, to define life goals and to give priority tovalues, without specifying to what extent the context andcircumstances of an individual situation may affect a person’s
exercise of moral choice. Respect for Persons posits that morallaw (autonomy of the will) requires freedom. What a moral
agent determines to do according to reason is autonomy of thewill, which equates with the dignity of persons (1). Kant assertsthat moral agents are subject to the moral law, which can be
discovered by pure reason (2). Kant’s “Categorical Imperative”
posited: “Act only on that maxim which you can at the same

125

time will to be a universal law” (2). Maxims are rules the moral
agent crafts by way of a thought experiment, testingalternatives to discover whether one can act in a way thatwould seem prudent for any other person, without defeating
one’s own intention. The goal, end, objective and intention of
the act proposed by the moral agent are important because themoral agent has a duty to self and others.
The presumption is that people should be free to do what
they desire, to choose relationships, and to act as they
determine morally right and best. Nevertheless, we regulate
liberty when a person chooses to act in ways harmful to self
and or others. Legal statutes prohibit injurious acts e.g.
unwarranted violence, or to prevent harm, e.g. seat belt laws. A
person’s freedom can be limited for the individual andcommunal good. In extreme cases, such as attempted suicide
the individual’s freedom takes second place to protective
actions. Paternalism in this sense is protective and for the intent
of prevention of harm. If a persons’ freedom is limited in a
protective sense, it is what Joel Feinberg calls “softpaternalism” where the limitation of freedom is necessary
because the individual’s decision-making ability is impaired, or
nonautonomous (3). In contrast, “hard paternalism” limits
freedom of autonomous persons to protect them “against theirwill from harmful consequences even of their fully voluntary
choices and undertakings” (3).
Circumstances may well limit the autonomous choice of aperson. In cancer patients, a clinical trial may seem like thehidden therapeutic cure, in which the potential subject suffersfrom “therapeutic misconception.” Because of a strong desire tolive and failure to achieve help through standard therapies, acancer patient may seek out a clinical trial as a last hope. Suchpatients enter phase I clinical trials where there is no“therapeutic benefit” and the consent document clearly statesthat “you will not benefit from this study” and yet patients assertthat their hope is to benefit (4).
Accepting the justification that such patients intend toadvance the research toward a more effective therapy is fairly
common for ethical review boards. Interviewing individual
patients in the consenting process is not one of the routine
practices of the ethical review board members. A bystander,
free of cancer or any other serious disease, might well question
if the patients are cognitively impaired by the cancer, fear of
dying, or other social and familial concerns. Minimally,
individuals with terminal disease may suffer distortions of
judgment in exercising autonomy.
Research Interests
Oversight committee members rely on the validation ofautonomy by the process of informed consent. Trusting that
subjects are exercising autonomy in research trials with
substantial risks respects autonomy. The review board also
weighs beneficence in assessing the risks in the protocol andthe benefits to the individual subject as well as for generalincrease in knowledge anticipated by the study.
The basic values inherent in national and internationalguidelines for research with human subjects began with the
Nuremberg Code requiring that the scientific merit of the study
be likely to benefit humanity and that each and every subject
give informed consent to participate. Within a decade it became
obvious that research was done without obtaining informed
consent (5) and as a correction, the Declaration of Helsinki of1964 required independent ethical review of all researchenrolling human subjects. The Belmont Report, grounded
ethical review in the principles of autonomy, beneficence andjustice (6). Codified in law, “the Common Rule” set a legal
framework around the ethical review of research with humansubjects. By adhering to the “Rule” and evaluating the research
proposal with respect to the guiding principles, the review
members accepted a necessary degree of paternalism. Absent

126

Eubios Journal of Asian and International Bioethics 17 (July 2007)

any paternalism, the risk limit would be set only by what the“volunteer” was willing to accept.
All clinical research is designed to answer scientificquestions that have predictable value but unknown answers.
Any subject in clinical research is at some degree of risk,
hopefully counterbalanced by some benefit to the individual orcommunity. Benefit to the individual may lie in the desire to see
the trial through and to be part of some larger project that
advances medicine. Volunteers in HIV/AIDS vaccine trials face
the possibility that the vaccine will not be protective. No such
vaccine is known at present (7). Vaccine testing of humanvolunteers in populations with high prevalence of HIV infection
is required in order to evaluate the protective effect of a
vaccine. If absolute protection were mandated to the extent thatno subject in the study could become infected post-vaccination,
the study would have no scientific merit. Thus, placebo controls
although risky, are one way to determine efficacy of anexperimental product. It would be unconscionable to put
persons at risk of HIV infection without educating them aboutprotective and preventative strategies. Thus the balance isdelicate: education for preventing infection balanced against theneed to evaluate the protective nature of the vaccine.
In international trials collaboration requires adherence tothe guidelines of ethical oversight of human subject researchand requires sensitive, active listening to review board
members in the host country along side their counterparts fromthe sponsor. There are moral and rational reasons for
conducting clinical trials in regions of the world with the highest
prevalence of disease, HIV, malaria, so that efficacy can be
determined. Critics have called attention to ethical challenges inthis type of research, e.g. whether placebo controlled studies
can be justified. Rather than impose sponsoring country rules
or standards in international contexts, there is merit in aconsideration of respecting the host’s ethical reviews in theirown context.
The U.S. Department of Health and Human Services(DHHS) commissioned a Working Group to examine how to
implement 45 CFR 46.302 (8). The DHHS study was clear in
the message to other countries that U.S. regulators are willingto compromise with respect to how, but not if, research
participants are protected. Such evolving policies need toexpress sensitivity to multinational collaborative research.
Prisoners, a case in point
Generally, researchers often exclude prisoners as
subjects because such persons are believed to lack sufficient
freedom to satisfy the autonomy principle of informed consent.
Regulations within 45CFR46 subpart C allows research withprisoners under tight controls, designed to protect theirvulnerability. If interpreted too strictly, prisoners risk being
denied the opportunity to participate and any putative benefits
inherent in the research.
Imagine that a large clinical trial with an AIDS vaccine
enrolled thousands of people. After completing the vaccination
phase of the trial, and during the follow-up phase, individuals
became prisoners. On the basis of the assumption that
prisoners cannot be subjects, such individuals would be
withdrawn from the study. Indeed ethical review might require
such an action. In a recent international trial being conducted in
Thailand this situation occurred and the Thailand Ethics Review
Committee along with U.S. collaborators faced the decision torequire withdrawal of persons while incarcerated or to allow
individuals the freedom to choose to remain in the trial with aprocess of re-consent.
I served on the review team that visited two Thai prisonsas part of the process of evaluation that is required to reachcontext sensitive decisions. As we drove into the parking lot
near the first prison, we noted clean grounds; well-tended
gardens of tropical plants surrounded the entrance, andconstruction that was modern and well maintained. The entry
process included surrender of cell phones, cameras, and any
sharp instruments. The guards were sharply dressed inuniforms, had pleasant demeanors, and carried no weapons.
No guns were seen anywhere in the prison. Inside the grounds,
the prisoners were employed at various jobs, some tended theplants lining the walks, others prepared food for the noon meal,others studied in classrooms, while others worked at metal orwood crafts. Prisoners were not sitting idle in cells but wereactively engaged in activities useful for the prison communityand simultaneously were acquiring useful skills for their future
re-entry into society. The sleeping facilities were dorm style withclean showers and toilets, open to the tropical air, enclosed bygated bared doors. These conditions could not be staged forthe benefit of outside visitors.
The clinic was well stocked with medicine, equipment andstaffed with competent professionals. The interactions between
prisoners and guards were polite, respectful and courteous.
The impression was more like a college campus than a prison.
Speaking with the warden, our questions revealed an
impressive reform system. The recidivism rate had dropped toless than10% with the current emphasis on human dignity anda commitment to help each prisoner return as a productive
member of society.
Respect for persons should allow individuals to exercise
autonomy even while vulnerable. Study officials asserted thatthe prisoners already enrolled in the protocol prior toincarceration have a right to remain in the study. It was evident
that being a prisoner in the two prisons we visited was a vastlydifferent context than the conditions associated with being inprison in many other places. Given the communitarian ethos ofThai society, individuals in these prisons are not deprived ofhuman interaction, not restricted to endless hours of boredom
but have a communal role within the prison community.
Nevertheless, they were in prison.
Recognizing that such research volunteers are vulnerable
while incarcerated, their willingness to continue in the researchwould need additional safeguards, to protect their rights, safety,
and welfare. Privacy and confidentiality issues were addressedby limiting knowledge of who was in the study to the prison
physician and warden. Records for the research protocol were
kept by the study team at a separate location from the prison
medical records. At one site, research personnel made visits inthe same way and at the same place as family members. At theother site, study participant visits followed the same procedures
as for prisoners visiting the clinic for other reasons. Research
visits were conducted in a private room. Further, each volunteer
was given the opportunity to re-consent with each follow-up visit
during incarceration and to withdraw if they desire.
Respecting vulnerable persons
Universally, autonomy is the principle underscoring
informed consent. Plurality of interpretation in different contexts
respects autonomy of human diversity. Gerald Dworkin notedthat autonomy means, “liberty (positive or negative), dignity,
integrity, individuality, independence, responsibility and selfknowledge … self assertion … critical reflection … freedom
from obligation … absence of external causation … andknowledge of one’s own interests.” (9, 10) This partial list
reveals how far contemporary conceptions of autonomy arefrom their Kantian origins. Rather than aligning autonomy withrespect of persons as Kant did, current practice within theprocess of obtaining informed consent come closer to a form ofindividual independence. Given the more individualistic freedommodel of autonomy, it is understandable why concern andpolicy would proscribe withdrawing any research subject during
incarceration. From the view inside the Thai prison we visited,
the greater praxis of respect for prisoners as persons,autonomy takes on a more Kantian connotation.

Eubios Journal of Asian and International Bioethics 17 (July 2007)
Research ethics committees have a responsibility toprotect subjects from violations of their rights and welfare. It isclear that doing so means getting inside the context of thesituation in view of the regulatory requirements. The process
requires avoiding any stereotypic understanding of a persons’
status be they prisoner or free. The experience reported here
exposes how diverse the context and circumstances can be for“prisoners.” Norms such as autonomy in clinical trial research
are expected to transcend cultural differences. For a principle
or moral standard to hold universal appeal and relevance, theparticular context of the individual and group must be taken into
account. Rules, principles, and research ethics guidelines arefoundations from which we weigh particular situations using
reason, interpretation and judgment (9).
Informed Consent is a process, not merely a document.
Knowing prisoners are vulnerable subjects should not lead toan absolute application of exclusion; rather such knowledge
should lead us to learn more about their specific circumstances.
In situations where the prisoner has the other protections
afforded human subjects, it is possible that sufficient autonomy
is present to warrant their continued participation in a clinical
trial for follow-up purposes. To deny that “right” simply by
application of a protective rule could add unjustified burdens.
Rather than ruling out such subjects, site visits andinvestigation into the circumstances of the trial participants
offers the opportunity to determine how best to protect andsimultaneously respect enrolled subjects. Soft paternalism maylead research review board members to assume that risk ofharm to enrolled subjects while incarcerated justify removal ofsuch persons from the study, but it is also possible thatsensitivity and awareness of context would lead to a decision toallow subjects to remain in the study. We should not assume
that subjects are incapable of protecting their own interests. We
should strive to enable subjects to make autonomous decisions
rather than rely on regulations to protect them.
Communitarian cultures such as that in Thailand remind
us that one does not live alone, that persons are social beings,
that an individual needs interaction with others, and that ourvalues and goals are influenced by our society and friends. One
person takes from the social construct what is good and refines
his/her values according to reason. This process is the complex
matrix in which a person is autonomous. Allowing a person to
use their reason and act according to their values is a dynamic
process.
References
1.

Boyd, Ann Lewis, “Anagogy of Autonomy,” EJAIB 10: 113-118(2000).
2.
Kant, Immanuel, Groundwork of the Metaphysics of Morals,
Translated and edited by Herbert James Paton, NY: Harper andRow, (1956).
3.
Feinberg, Joel, Harm to Self, NY: Oxford University Press,(1986).
4.
Miller, Franklin, and Howard Brody, “A Critique of ClinicalEquipoise: Therapeutic Misconception in the ethics of Clinical
Trials,” Hastings Center Report 33 (3): 19-28, (2003).
5.
Beecher, H. “Ethics and Clinical Research,” New England
Journal of Medicine, 274: 1354-1360, (1966).
6.
Childress, James F., Eric M. Meslin, and Harold T. Shapiro(Eds), Belmont Revisited: Ethical Principles for Research with
Human Subjects, Washington DC, Georgetown University Press,(2005).
7.
Johnston, Margaret I., Anthony S. Fauci, “An HIV Vaccine –evolving concepts,” New England Journal of Medicine 356: 2073-81,(2007).
8.
Department of Health and Human Services, “Protection of
Human Subjects: Proposed Criteria for Determinations of Equivalent
Protection” Federal register 70, no 57 pp 15322-15327 (2005).
9.
Miller, Franklin G. and Alan Wertheimer, “Facing Up toPaternalism in Research Ethics,” Hastings Center Report 37 no 3:
24-31 (2007).

10.

127

Dworkin, Gerald. The Theory and Practice of Autonomy,
Cambridge: Cambridge University Press, p6 (1988).

Asian Bioethics Association (ABA)
The website for ABA is <eubios.info/ABA.htm>

New members will be listed in the next issue.

News in Bioethics & Biotechnology
http://eubios.info/NBB.htm
International Bioethics Education Project News
<http://groups.yahoo.com/group/Bioethicseducation/>)

IAB Genetics & Bioethics Network: On-line
The complete address list is updated on the Internet.
Send all changes to Darryl Macer.

UNESCO Asia-Pacific School of Ethics
http://www.unescobkk.org/index.php?id=4913

Send papers to EJAIB Editorial Office
Editorial address:

Prof. Darryl Macer
RUSHSAP, UNESCO Bangkok,
920 Sukhumvit Rd, Prakanong,
Bangkok 10110, THAILAND
Fax: Int+66-2-664-3772
Email: asianbioethics@yahoo.co.nz
d.macer@unescobkk.org

Conferences
For a list of some ethics meetings in Asia and Pacific:
http://www.unescobkk.org/index.php?id=current_and_future_events

UNESCO Conference Ethics of Energy Technologies in
Asia and the Pacific26-28 September, 2007
Imperial Tara Hotel, Bangkok, Thailand
Contact: Dr. Darryl Macer
UNESCO Pacific Regional Bioethics Workshop (incooperation with the National Commission to UNESCO of
New Zealand)
13-15 November, Apia, Samoa.
Contact: Dr. Susan Vize, Email: susan@unesco.org.ws
UNESCO-University of Kumamoto Joint Bioethics
Roundtable: Self-Determination in Asia
15-16 December, 2007
University of Kumamoto, Japan
Contact: Dr. Darryl Macer, Prof. Takao Takahashi
Ninth Asian Bioethics Conference (ABC9): Healthy andProductive Life in Harmony with Nature, 3-7 November,
2008, Jogyakarta, Indonesia. Hosts: Indonesian National
Bioethics Commission.

Eubios Journal of Asian and International Bioethics 17 (July 2007)

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by Darryl Macer,... May 1994 ISBN 0-908897-05-7, 460pp. Cost: US$30 UK£15 NZ$35 A$35 C$32 ¥3000 NZ$50
Bioethics in High Schools in Australia, Japan and New Zealand,
by D. Macer, Y. Asada, M. Tsuzuki, S. Akiyama, & N.Y. Macer
March 1996, ISBN 0-908897-08-1, 200pp.(A4)
Cost: US$25 UK£15 NZ$30 A$30 C$30 ¥2000

NZ$40

Protection of the Human Genome and Scientific Responsibility (Bilingual)
Editors: Michio Okamoto, Norio Fujiki & D.R.J. Macer,
April 1996, ISBN 0-908897-09-X, 210pp.
Cost: US$25 UK£15 NZ$30 A$30 C$30 ¥2500

NZ$35

Bioethics in India (includes 115 papers from Jan.1997 conference)
Eds: Jayapaul Azariah, Hilda Azariah & Darryl R.J. Macer
June 1998 ISBN 0-908897-10-3, 403 pp.
(Printed in India)
Cost: US$30 UK£18 NZ$34 A$36 C$36 ¥3000
NZ$45
Bioethics is Love of Life: An alternative textbook
by Darryl Macer, July 1998 ISBN 0-908897-13-8, 152pp. Cost: US$26 UK£14 NZ$34 A$34 C$32 ¥3000
NZ$40
Bioethics in Asia (includes 118 papers from Nov.1997 conferences, ABC’97 Kobe and Fukui Satellite)
Eds: Norio Fujiki & Darryl R.J. Macer
Cost: US$36 UK£20 NZ$40 A$38 C$40 ¥3000
NZ$50
June 1998 ISBN 0-908897-12-X, 478 pp. October 1999 ISBN 0-908897-14-6 (Japanese), 320pp.
Ethical Challenges as we approach the end of the Human Genome Project
Editor: Darryl Macer, April 2000 ISBN 0-908897-15-4, 124pp. Cost: US$20 UK£12 NZ$30 A$30 C$30 ¥2500 NZ$35
Bioethics Education in Japanese High Schools (in Japanese only)
Editor: Darryl MacerApril 2000 ISBN 0-908897-16-2, 112pp. Cost: US$20 UK£12 NZ$30 A$30 C$30 ¥1000 NZ$35
Bioethics and the Impact of Human Genome Research in the 21st Century
Eds: Norio Fujiki, Masakatsu Sudo, & Darryl R.J. Macer March 2001 (English and Japanese bilingual, 350pp).
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Cost: US$30 UK£20 NZ$40 A$38 C$40 ¥3000

Bioethics in Asia in the 21st Century
Eds: Song Sang-yong, Koo Young-Mo & Darryl R.J. Macer
August 2003 ISBN 0-908897-19-7, 450pp. Cost: US$35 Euro35 UK£20 NZ$40 A$38 C$40 ¥3000
Challenges for Bioethics from Asia
Ed: Darryl R.J. Macer
November 2004 ISBN 0-908897-22-7 656 pp. Cost: US$35 Euro35 UK£20 NZ$40 A$38 C$40 ¥3000
A Cross Cultural Introduction to Bioethics 2006, 300pp. (A4)
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NZ$50

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Editor: Darryl Macer

The Eubios CD-ROM

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