Eubios Journal of Asian andInternational Bioethics
EJAIB Vol 15 (1) January 2005 ISSN 1173-2571
Copyright ©2005 Eubios Ethics Institute (All rights reserved, for commercial reproductions).
31 Colwyn Street, Christchurch 8005, New Zealandc/o Prof. Darryl Macer, RUSHSAP, UNESCO Bangkok, 920 Sukhumvit Rd, Prakanong, Bangkok 10110, THAILAND

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Official Journal of the Asian Bioethics Association (ABA) and the IUBS Bioethics Program

Contents

page

Editorial: Move to Thailand
1
Wittgensteinian Philosophy, Anthropology and the Ethicsof Psychiatry2- Hadas Gabizon-David and Frank J. Leavitt
Three Dimensions of Contemporary Bioethics: Western,
Global, Cosmist
6- Konstantin S. Khroutski
Body Donation – A need based problem!
10- Pushpa Dhar
Some Ethical Issues Concerning Medical Reproduction
In Portugal
12- Prof.M. Cristina Rosamond Pinto
Artificial Reproduction Technologies and Ectogenesis
13- Frida Simonstein
What’s Morality Got to Do With it? The Need for Principle
in Reproductive Technology and Embryo Research
16- James A. RiceDo we need a Thanatoethics?
22- Oana Iftime
Are the dead really departed when we remove theirorgans ?
25- Paolo Becchi
Commentary on Becchi
29- Masahiro Morioka
Bioethics thick and thin: A review of Genomics In Asia: A
Clash of Bioethical Interests? edited by M. Sleeboom
30
Reviewed by: Michael Barr
Perceptions of interpersonal relationships held by patientswith obstinate disease32- Atsushi Asai, Yugo Narita, Etsuyo Nishigaki, Seiji Bito,
Taishu Masano, Yukari Take, Yasuhiko Miura, Koichiro Itai,
and Shunichi FukuharaNews in Bioethics and Biotechnology (not in this issue)
ABA Membership, IAB Genetics Network, Conference
35
Ordering Information
36
Send papers to the editor in electronic form if possible.
Please use reference style used in News section, do not use
automatic footnotes or endnotes. Papers are peer reviewed.

Deadline for the May 2005 issue is 1 April, 2005.

updated:

Editorial: Move to Thailand- Darryl Macer, Ph.D.
Director, Eubios Ethics InstituteAffiliated Professor, United Nations University

This editorial will still surprise a number ofreaders. It is written on the penultimate day of my 15
years at University of Tsukuba, Japan. For all
correspondence please use the new address below. The
work at UNESCO is challenging and after a number ofyears of association as an IBC committee member, andworking in an academic role for UN organizations, I took
up an offer to join the work of UNESCO, and havealready been based in Bangkok for some months. I
remain attached as affiliated professor at United Nations
University Institute of Advanced Studies.
The opportunity to live in Thailand should prove
even more culturally interesting than in Japan, with awide range of South East Asian cultures to learn from.
There are numerous opportunities for intercultural
exchange, and we hope that readers of EJAIB will
participate in more exchanges of opinion, and debate.
This issue has no news section, rather including a
number of papers from philosophy of bioethics,
reproductive technology, and dying and organtransplants. Readers are invited to send commentaries
for publication. News will be reported in future issues, as
the transition period between countries of the editorial
office has finished.
The Email address printed in the September andNovember 2004 issues of EJAIB was incorrect, and it
should be: asianbioethics@yahoo.co.nz
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

2

Eubios Journal of Asian and International Bioethics 15 (January 2005)

Wittgensteinian Philosophy,
Anthropology and the Ethicsof Psychiatry- Hadas Gabizon-David
Centre for Asian and International Bioethics, Faculty of Health
Sciences, Ben Gurion University of the Negev, Beer Sheva,
IsraelEmail: gabizon@bgumail.bgu.ac.il- Frank J. Leavitt,
Centre for Asian and International Bioethics,, Faculty of Health
Sciences, Ben Gurion University of the Negev, Beer Sheva,
Israel.
Email: yeruham@bgumail.bgu.ac.il
Introduction
Discussions of the philosophical base of bioethics too often
concentrate on philosophical ethics: utilitarianism, deontology,
teleology, Aristotelianism, etc. This approach is too narrow.
Science, philosophy of science, philosophy of logic andlanguage, metaphysics, deeply influenced the ethicalphilosophies of the great philosophers of the past.
If they were right in putting ethics at the crown of theiredifices, and if this is what gave their ethics substance anddepth, then perhaps our bioethics, too, must grow out of
substantive enquiries into the nature of life, existence,
language, logic and science: especially of the health and life
sciences. As one example of how this might be done, we want
to try to put this ideal into effect by developing an outline of a
Wittgensteinian bioethic of psychiatry. We do not intend tocreate ethics incestuously out of ethics. But we shall start with
substantive enquiries into fundamental concepts in
Wittgenstein's philosophy.
The philosophy in this paper will not, however, be
Wittgenstein's. But we hope it will be Wittgensteinian. Rather
than aiming at historical accuracy about every detail ofWittgenstein's own opinions we shall attempt to draw logicalconclusions from some of his doctrines as we understandthem.
We shall not try to guess at the bioethic of psychiatry
which Wittgenstein "might have written", but rather suggest anddiscuss a bioethic of psychiatry which is inspired by
Wittgenstein's philosophy. First, however, let us clarify further
what we mean by saying that ethics develops out of
substantive enquiry.
We shall use two examples from the history of philosophy:
Hume and Aristotle.
David Hume was highly inspired, as we see in the preface
to his Treatise of Human Nature, by Newton's success inapplying empirical methods to natural philosophy, to what wetoday call "physics". Hume subtitled his Treatise: "an attempt to
introduce the experimental method of reasoning into moral
subjects. He then devoted the first book of his Treatise to
substantive philosophy, i.e., epistemology, ontology andphilosophy of mind, in which he took the stand that all that canbe known to us are impressions and ideas. It naturally follows
that an enquiry into ethics can only be based upon an empirical
study of the laws of interplay of impressions and ideas within
the mind, because impressions and ideas are the only data
available to us on which any enquiry, including ethical enquiry,
can be based.
In Hume's philosophy ethical praise and blame are
passions, i.e. a certain kind of impression. So, ethics has to bea study of impressions. He therefore devoted the second bookof his Treatise to an experimental and highly introspective
study of causal laws governing the passions.
This is part of what is today called "psychology", which isoften considered a science. He then applied these doctrines, inthe third book of his Treatise, to ethics, in a series of empiricalgeneralizations about the etiology of moral praise and moral
blame. The ethics was not generated from ethics but directlyfrom epistemology and psychology.
Another example is Aristotle, whose study of scientificmethod in the Posterior Analytics -- with special attention to thegeometry which was developing just before Euclid -- lead to theconcept of anchinoya, the mysterious faculty of "quick wit" or
intuitive grasp of the cause of a phenomenon or the
explanation of a mathematical proposition.
This mysterious purely intellectual faculty reappeared in
the De Anima as the "agent intellect" which grasps the
explanations of things. (1)In the Nicomachean Ethics this faculty becomes that which
distinguishes us from the animals, makes us most similar toand loved by the gods, and the exercise of which is essential toan ethical life.
We think that what we said about Hume and Aristotle canbe generalized and that all serious philosophical ethics isbased on substantive philosophy, which in turn is, whenserious, inspired by the science of the day. But in the interestsof brevity, we shall not develop this point with respect to otherphilosophers of the past.
We shall now turn to Wittgenstein, and to the biomedical
sciences which are, in our generation, the "science of the day"just as physics was in Hume's time. The philosophy of Ludwig
Wittgenstein was highly influential in Anglophonic andEuropean philosophy in the mid twentieth century.
Some aspects of the Wittgensteinian movement were,more over, typical to the times and similar to movements inother fields, including cultural relativism in anthropology as canbe seen in the controversies surrounding Winch's writings , andincluding, as we shall see, the anti-psychiatry movement inpsychiatry. We shall present an admittedly oversimplified andabbreviated statement of some core points in Wittgenstein's
philosophy.
Wittgenstein's philosophy is enormously complex anddisorderly, made of a vast number of scattered jottings,
remarks and students' lecture notes. There are many different
schools of interpretation.
Rather than attempting a scholarly interpretation of his
philosophy we shall state a relatively workable Wittgensteinian
doctrine as a basis for developing bioethical consequences,
particularly in the ethics of psychiatry.
We shall discuss four core ideas: the idea of "meaning asuse", the idea of a "language game", the connexion between"language and "forms of life", and the well-known
Wittgensteinian doctrine that "there can be no private
language".
I) Meaning as use: Wittgenstein's philosophy of language
stands in opposition to the Platonist semantics which ruled inphilosophy for many years.
According to Platonist semantics words indicate absoluteideas. The word "good", for example stands for absolute
goodness, and things are judged to be good or not-good asthey are near to or distant from this absolute standard.
According to Wittgensteinian philosophy, on the other hand,words do not represent ideas but are rather like pieces in agame which are used in various ways to accomplish various
things in our lives, like expressing our feelings for example.
Words have no permanent, fixed semantic meanings over
and above their uses within specific contexts, such as forexample, emotional, inter-personal or cultural contexts.
But to appreciate the implications of this doctrine ofmeaning for psychiatric ethics, we must first discuss the idea of
language games.
II) Language Games: Just as pieces in chess and balls infootball are said to be correctly used if they are used according
to rules which constitute their functions in these games, soEubios Journal of Asian and International Bioethics 15 (January 2005)
words of different languages are used according to rules whichconstitute those languages.
Wittgenstein, however, thought of us as playing various"games" with words. When the word dog, for example is usedin the "game" of classifying animals into genus and species, it
has one use. But when it is used in the "game" of cursing,calling someone a dog, it has an entirely different use. If
someone curses you by calling you a dog, it would beinappropriate to reply by saying: "But I am not a four-legged
mammal". Just as you cannot use a football in a game oftennis, so words in one language game may have entirely
different uses within another language game.
An obvious consequence is the cultural relativism which
was debated at length by philosophers like Winch and Jarvie
and in Elazar Weinryb's Hebrew writings, where attention wasgiven to cultural relativity with respect to scientificity andrationality.
But our concern is bioethics. A clear consequence of thedoctrine of language games, which is inseparable from thedoctrine of meaning as use, is that ethical words like "good","bad", "deviant", "cruel" are used according to rules which are
determined by a socio-cultural context, and which will bedifferent from culture to culture, and -- perhaps no less so (aswas suggested by the International Bioethics Survey (2) -within each culture.
It follows that there is no universal ethics because uses of
ethical words will vary both inter culturally and intra culturally.
Just as you can not judge a move in basketball according
to the rules of football, so there can be no basis for members of
one culture to judge uses of evaluative words --and theirconsequences in action -- in foreign cultures. Nor can two
people within the same culture always judge the use ofevaluative words by others within the same culture.
Perhaps there are consequences for psychiatric ethics.
Can't we say that the so-called "mentally ill" are really a culture
or sub-culture in-and-of themselves, with their own language
games, their own rules for using words: especially in ethicaljudgments where one decides whether actions are right orwrong? If so then the so-called "mentally ill" are not deviant but
only culturally different. They deserve the same respect which
we owe to any minority culture.
By this is not meant "toleration", because to tolerate
someone is to stoop down to do that persona favour. But
according to the conclusion which we are considering, the socalled "mentally ill" are fully equal to everyone else. It would
make as much sense to ask them to tolerate us as it would to
ask us to tolerate them.
The similarity to doctrines of Szasz, Laing and Foucault
should not be surprizing. There seems to have been a spirit of
the times. But does it really make sense to call the mentally ill aculture or sub-culture? It has been objected to us: "Of course if
the so-called 'mentally ill 'form a radically different culture, we
do not understand them, and if we do not understand theirlanguage at all, we simply cannot evaluate them. But if we cancall some people 'mentally ill', this shows that they are nottotally severed from us, and mentally ill or not, we can evaluate
agents [who are] different from us in some respects but [whoare] in agreement in… [other respects].
"(Anonymous referee).
This is a challenging objection: If they are totally severedfrom us then it seems that we cannot evaluate them, even to
the extent of saying that they deserve respect. But if we canunderstand them, if only just to the extent that we know thatthey are thinking beings different from us, then why cannot weevaluate them? In reply, and in continuation of our attempt todevelop a "Wittgensteinian" doctrine, we suggest that where
the sets of evaluative concepts used by two cultures (or subcultures)overlap, then members of one culture may evaluate
members of the other with respect to the use of theseconcepts. But where the sets of concepts don't overlap there
can be no evaluation. For example, suppose a person points

3

to a man and says: "This man is very fat, and all very fat people
are possessed by evil spirits and ought to be exorcised."
There are two judgments here:
1. "This man is very fat",2.
"All very fat people are possessed by evil spirits andought to be exorcised".
If we use the word "fat" in the same way as this person, we
may evaluate the first judgment and say: "You think this guy isfat?! You should have seen the guy I saw in the Savoy Truffle
Restaurant yesterday." But if our own uses of the terms: "evil","spirit", "ought" and "exorcised" are different from his uses, thenwe cannot evaluate the second judgment. The common store
of concepts, the intersection of the sets of our concepts andtheirs, would be the basis of our moral respect for so-called
mentally ill people. But more on the idea of respect will be said
when we come to discuss private languages below.
First, however, another problem must be discussed.
Factually speaking, does it really make sense to say that thementally ill form a culture in the sense of having a stock ofconcepts, patterns of thinking and behaving which unite themwith one another and separate them from others? Further, isthere any such thing as a community among them, with suchfeatures as solidarity or mutual loyalty? This is a big question
to which an answer cannot be given without going far beyond
the scope of this paper.
Perhaps sufferers of a common psychiatric illness or
syndrome, like schizophrenia or manic-depression do share acommon set of concepts and patterns of thinking and behaving.
Otherwise we wouldn't identify them as suffering from the same
psychiatric syndrome. There would be no way to identify theirsyndrome. But do they form a community in the sense of
having loyalty to one another? Or in the sense of reallycommunicating with one another? Perhaps they do so in thesense of being part of a segment of the population who are
different from others and therefore may feel discriminatedagainst.
But then they might share this communality with othermentally-ill people who do not share any unique patterns of
thinking with them.
Again can we possibly say that psychopathic murderers
and pedophiles, on the one hand, form any community withmild and basically decent people who have a tendency to deep
depression? Rather than speaking about the community of thementally ill, we should speak instead of subsets of the set ofthe mentally ill, communities of mentally ill who are sufficiently
similar to form a culture.
This line of thinking is leading to the idea of a kind ofcommunities
constitutedbyWittgensteinian"family
resemblances", with members sharing some things, and notothers ,with various other members. But further enquiry into thispoint would require extensive empirical research into whatreally goes on within groups of mentally-ill people. And that isbeyond the scope of this paper.
III) Language is a Form of Life: By "language" is notmeant Hebrew or Tamil or Japanese, but rather subtle rules forthe uses of words. In the present context we are interested
especially in evaluative words like "rational", "scientific","good","ugly" etc.
Wittgenstein may not have said: "Language is a form oflife" in these exact words.
But he said enough similar things --like: "to imagine alanguage means to imagine a form of life"(3) that we may takethis saying to represent his view. This famous but obscure idea,that "language is a form of life", is open to a number ofinterpretations.
One way to understand the phrase is that a language, i.e.,a set of rules for uses of words, determines a way of living,which determines a culture, which determines the ethicalvalues of the members of that culture. We think that many
Wittgensteinian scholars would understand it this way. But

4

Eubios Journal of Asian and International Bioethics 15 (January 2005)

another way to take the phrase would be that instead of sayingthat a language is the basic factor from which everything else
results (like Wittgenstein's students seem to have thought) weshall consider the idea that our language and patterns of
behavior, which themselves determine ethical values, arethemselves functions of something more basic: our genetic
inheritance together with our environment.
Stated a little simplistically, this doctrine would say that the
genome of individuals or a group, together with theenvironment, determines a language (in the normative sense of"language" discussed above) together with patterns of
behavior. Our languages together with our patterns of behavior
determine the language games which constitute our ethicalperceptions of right and wrong. The growing body of genetic
research suggesting a significant genetic factor in determining
personality traits led us to this suggestion. And of course
personality traits can lead to values. Obviously environment
has a role, but a biological basis seems definitely to exist. Anda biological compatibility among individuals might lead to acommunity with a shared ethic.
And if such an ethic deviates from what we personallybelieve to be right or wrong, it would seem that we should treat
it nonetheless with respect because it results from genetic andenvironmental factors which are beyond human control. Similar
conclusions apply of course to communities of the so-called
mentally ill.
An anonymous referee has objected to our suggestions
that a Wittgensteinian bioethic would ascribe a biological basis
to language, culture and ethics, and biological bases fordifferences among people and cultures. According to theobjection, Wittgenstein would rather ascribe similarities tobiology while ascribing differences to historical andanthropological factors.
This kind of interpretation seems to be quite standard. For
example H-J Glock, discussing:" Wittgenstein's claim that heprovides 'remarks on the natural history of human beings' (Ref(3) Section 415) " wrote that: "Wittgenstein's naturalism isanthropological rather than biological".(4)The problem, however, is that when studying a Germanspeaking philosopher who developed his philosophy during theth
first half of the 20 century, we cannot ignore the possibility
that his thought might have developed to some extent out of
the scientific-cultural milieu of the time when anthropology inGermany was inseparable from biology and what they used tocall "race science".
Indeed when one reads Wittgenstein's remarks collected in
the book, Culture and Value (5) it is hard to escape the feelingthat one is reading a eugenic polemic. Wittgenstein, among
other things, refers to the "unpoetic mentality" of the "Semitic
races" He says: "If Jews are said not to have any sense ofproperty, that may be compatible with their liking to be richsince for them money is a particular sort of power, not property.
" He refers to the Jews' "secretive and cunning nature." He
refers to the Jews as a "sort of disease" a "tumour" in European
history. (Ref (3) 6, 21, 22.)
There has been an attempt to explain away Wittgenstein's
anti-Semitic remarks by suggesting that he wasn't writing
against real Jews; he was only writing against a "metaphysicalspecies" (6) But the phrase, "metaphysical species" is not in
our opinion clear enough to make it possible for us toinvestigate this suggestion.
And this is not the place for detailed research into
Wittgenstein's anti-Semitic remarks. (See however the note
appended to reference (6) at end of paper.) But it seems to us
that if such a study were to take these remarks at face value
then it would be natural to understand Wittgenstein to be abeliever in Third Reich "race-science", especially with respect
to the idea that biology, through the genes, determines thementality and ethics of a group of people. But if "mentality" isdetermined by "language", in Wittgenstein's philosophicalsense of "language", then our biological interpretation of"language as a form of life" seems to follow naturally.
As Israelis we would have preferred not to go into such an
emotion-charged subject as Third Reich science. We certainly
are not asking for the sympathy which mention of this subject
often provokes when Israelis are present at international
conferences. But Wittgenstein's racial remarks in Culture andValue make it impossible to avoid this subject in any study ofhis philosophy. We must also emphasize that in suggesting
possible points of similarity between Wittgenstein's philosophy
and Third Reich racial science we, while obviously not unawareof the evils of the Third Reich, are not saying that everything intheir science was wrong and evil. There has not yet been
carried out sufficient historical scholarship to allow us to decide
how much of German biology in the l930's and early l940's wasevil nonsense, and how much of it was genuine science and an
integral part of the process leading to today's genetic medicine.
Insuggesting,therefore,asimilarity
betweenWittgenstein's doctrine of language as a form of life and theGerman biology of his times ,we are simply pointing to one
aspect of his doctrine, and not necessarily saying that all
aspects of Wittgenstein's doctrine were evil or Nazi.. But
Wittgenstein's anti-Semitism seems to go deep enough tosuggest a serious connection between his concept of a form oflife and racist ideas. But there is another serious problem withthis philosophy as we shall see in the next section.
IV) There can be no Private Language: This
Wittgensteinian slogan is also obscure and many attempts
have been made to interpret it. Wittgenstein especially thoughtthat our ability to discuss our feelings and emotions depends
upon our being members of a community with sharedassumptions as to the use of language. Similarly the
Wittgensteinian assumptions which we are exploring would
suggest that an individual who idiosyncratically evaluates theworld in a way incomprehensible to others is not reallyevaluating the world, but simply talking nonsense.
This is because values are inseparable from the uses of
evaluative words in a language and a language is a communal
entity. But although we have been all along using the phrase"the community of the so-called mentally ill", we wonder how
many mental patients really communicate with one another.
Are not some of them in a world of their own? And if they
are in worlds of their own their linguistic and other behavior
would not be worthy of the respect which is due to minority
tribes and communities.
For if they are not really communicating with one anotherthen there is no such community and a strict Wittgensteinian
would conclude that there is no room to respect their moral
judgments because they are just talking nonsense. As has
been pointed out to us (anonymous referee), however, if wecannot understand what mental patients are saying to one
another, then we have no basis for the conclusion that they aretalking nonsense. It seems that we have to give them thebenefit of the doubt and assume that there may be some sense
there -- perhaps a profound sense -- which is beyond ourcapacity to understand. This does not mean, of course, thatthey do not need our help and professional care. Without thiscare life for them and others can be quite dangerous or at least
miserable.
The situation is similar to patients in the persistentvegetative state. We have no evidence of consciousness. But
we also have no evidence that they are not conscious, that
there are not thoughts and feelings and experiences going on
inside and beyond our grasp. This uncertainty about what isgoing on inside is the basis for the human respect and dignity
which has to be allowed these people.
In saying this we disagree with and depart from the
Wittgensteinian philosophy, as well as all forms of philosophicaland linguistic behaviorism, to which the idea of what is "goingon inside" is a foreign and unacceptable idea. We, moreover,Eubios Journal of Asian and International Bioethics 15 (January 2005)
recognize the strong genetic factor in both standard and nonstandard emotion and behavior.
And we know that we too are also products of our genes
and our environments. So even though we allow that society
may have to protect itself by restraining the mentally unusual,
we think they deserve the same love and respect as everybody
else.
Summary and Conclusions
We tried to show in our Introduction that philosophicalethics has traditionally developed out of substantive enquiries,
and not incestuously out of ethics. The body of our work was
an example of how a Wittgensteinian ethic can be developed injust this way.
We have shown how the idea of meaning as use, leads tothe concept of language games which are so-to-speak isolated
from one another by the different rules which constitute them.
This led us to the idea of different communities with cultures of
their own. We therefore raised the question of whether thementally ill may be regarded a unique community and culture,or perhaps a unique set of communities. Wittgenstein's idea of
language as a form of life led us to speculate about causes,
perhaps genetic causes of differing languages and cultures.
But we rejected the eugenic ideology which seems to bereflected in Wittgenstein's blatant anti-Semitic remarks. Nor can
we agree with Wittgenstein's rejection of 'private languages',
and we allow that individuals and small groups may have theirunique ways of thinking, their own cultures.
According to the Wittgensteinian philosophy which we tried
to develop here, it can be said that the so-called mentally illform communities constituted by a kind of family resemblance.
Although it would be hard to imagine psychopathic killers andpedophiles, on the one hand, forming any kind of community
with mild and decent people who have a tendency topathological depression, various subsets of the set of allmentally ill may be hypothesized to share a common language,
which is due to patterns of behavior which they learned fromtheir environment, and to their genetic inheritance. They may
also share similar ethics which can be seen by their values andperceptions of right and wrong. This conclusion leads us to a
recommendation about how to treat the mentally ill. We ought
to enable them to develop closed communities instead of
hospitalizing them. This does not mean that we should deny
them medical treatment, or medical supervision. But we should
encourage them to develop communities in and of themselveswith rules of their own and values of their own: in other words,
shared ethics. We might start by encouraging various moderate
degrees of self-governance within mental institutions, andgradually work towards encouraging communities of the deinstitutionalized mentally ill. But we shall have to develop thedetails of this proposal elsewhere. The purpose of this paper
has only been to develop the philosophical basis.
Note
This paper is an expanded version of a lecture deliveredby H G-D at the Second International Workshop on Israel andAsian Bioethics, Faculty of Health Sciences, Ben Gurion
University of the Negev, Beer Sheva, August, l998.
Acknowledgments
The authors wish to thank Dr Haim Marantz and an
anonymous referee for challenging and helpful suggestions forrevision. We apologize that personal factors caused such agreat delay in our re-writing of the paper.
Conflict of Interest
The authors confess to being human beings, sharing thevast majority of their DNA sequences with even the mostseriously mentally ill. The authors' attempt to suggest aphilosophical basis for respecting these patients' dignity was

5

motivated, therefore, by an interest which conflicts with theideal of absolutely objective science and scholarship.
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3)Wittgenstein L.
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23,24.
4) Glock H-J, A Wittgenstein Dictionary, Oxford, Blackwell,l996,125126.
5) Wittgenstein L.
Vermischte Bemerkunger, Culture and Value.
(German and English on facing pages) von Wright GH ed. , Winch P
tr. ,Oxford, Basil Blackwell, l980, l984).
6) Lurie Y. Jews as a metaphysical species. Philosophy (l989)64:323347. One of the passages of which Lurie makes use in his attempt toexcuse Wittgenstein's anti-Semitic remarks appears in the memoir
written by Wittgenstein's student, Norman Malcolm (Malcolm N.
Ludwig Wittgenstein, a Memoir (Oxford University Press, 1984, 30.)
The passage reads: One time…we saw a newsvendor's sign whichannounced that the German government had accused the British
government of instigating a recent attempt to assassinate Hitler witha bomb. This was in the autumn of 1939. Wittgenstein said of theGerman claim: 'It wouldn't surprise me if it were true.' I retorted that I
couldn't believe that top people in the British government would dosuch a thing. I meant that the British were too civilized and decent toattempt anything so underhanded; and I added that such a deed was
not in keeping with British 'national character'. My remark madeWittgenstein extremely angry. He considered it to be a great stupidity
and also an indication that I was not learning anything from thephilosophical training that he was trying to give me. He said thesethings very vehemently, and when I refused to admit that my remark
was stupid he would not talk to me any more, and soon after wepartedLurie is not at all clear about how he expects such a passage to help
him to excuse Wittgenstein's anti-Semitic remarks. In any case, thepassage must be seen in its historical context. A reading of British
newspapers of the time will reveal that the bomb attempt on Hitler'slife was made after the European war had begun and it was known
that the Germans had been sinking British merchant ships, and thatthey had already begun shipping many thousands of Jews
"eastward". In such a context it is hard to conceive that any sane
person could prefer the life of one mad leader over the lives of thecountless soldiers, seamen and civilians who were dying because ofthat one leader. Yet Wittgenstein and Malcolm seem to havedisagreed only on whether or not the British were capable of doing
something "so underhanded". But they seem to have both agreed
that the attack on Hitler's life was "underhanded". So it is hard to
escape the conclusion that Wittgenstein and Malcolm both seem tohave held Hitler in some esteem.

Three Dimensions ofContemporary Bioethics:
Western, Global, Cosmist- Konstantin S. Khroutski, M.D., Ph.D.
Institute of Medical Education, Novgorod State University after
Yaroslav-the-Wise, Novgorod Velikiy, RUSSIA
Postal address: Dr. Konstantin S. Khroutski, Ph.D.; A/B 123,
PO-25, IME NovSU, Novgorod Velikiy, 173025 Russia
E-mail: hrucki@mail.ru
Introduction
First of all, I would like to present the definition of thenotion "episteme". The latter has been introduced by Michel
Foucault in his work The Order of Things – to mean the regimeof truth that underlay all the discourses of a particular epoch.

6

Eubios Journal of Asian and International Bioethics 15 (January 2005)

However, soon after he abandoned the concept. Nevertheless,the conception of "episteme" has continued its autonomous lifein the world-wide science – in the sense of interpreting a history
as a number of "discontinuities" and directly meaning a certain
global principle of the organization of the all manifestations ofhuman life – the latent universal model (structure) of theconstruction of human culture and a civilization. The meaningsof the notion "episteme" and the notion "paradigm" (ThomasKuhn) bear a close analogy, but "episteme" is more wide andbasic in relation to the entire cultural dispositions of the given
civilization, predetermining philosophic and scientific activity as
well. More often, at present, the use of the notion "episteme"
implies the meaning of "western episteme".
In its turn, the fundamental importance of the "discontinuity
principle" in the life (development, ontogeny) of a civilization,society, or person corresponds to the notion "macroshift" by
Ervin Laszlo (2001), who is widely regarded as the founder ofsystems philosophy and general evolution theory (he is also theeditor of the journal "World Futures"). Distinctively, however,"discontinuity" reflects the events of the past and present, while"macroshift" serves the future (emergent future, not predictablefrom the current conditions) evolutionary stages. The following
reasoning by Ervin Laszlo deserves attention: "There havebeen other macroshifts in human history, but they spanned
centuries, allowing cultural values, beliefs, and change to occur
gradually. Today, technology has reduced our time to adapt;the entire critical period of change is compressed into thelifetime of a generation." (Laszlo, 2001). An outstanding
scientist outlines two possible scenarios: "The Breakdown,"
where we choose to drift without a change in our current
direction toward chaos, anarchy, and destruction, or "TheBreakthrough," where we collectively transform our thinking
and behaviour to produce creative, sustainable solutions todangerous global problems.
I would like also to lead (readers) to the reasoning of Soraj
Hongladarom (EJAIB 14/6). It may be objectionable but I might
propose the term 'third-order' judgments (in the development of
Hongladarom's 'first-order' and 'second-order' judgments).
'Third-order' understandings, herein (like episteme), imply the'upon' (or 'under', forming the foundation) of "second-order" and"first-order" bioethical judgments and decisions.
Finally, the Behaviourome / Mental Map Project, originatedand headed by Darryl Macer, is in accord with the all above
mentioned. A new episteme (paradigm, "breakthrough", 'thirdorder' understandings) in world-wide bioethics – that is what weacutely need for obtaining the effectiveness of the running
Behaviourome and, thus, reaching the great aims of the Mental
Map Project: To understand ourselves and, if we can makeindividual mental maps, – to offer persons assistance when
making moral decisions (Macer, 2002-2004).
Bioethics, Biopolitics, Biocosmology"Philosophy is a science and therefore, like every otherscience, it seeks to establish truths that have been strictly
proved and are therefore binding for every thinking being andnot only for a particular people or nation."
N.O. Lossky (Lossky, 1951, p.402).
In his bright and key presentation, during the ABC5 –"Globalisation of Bioethics – from the Asian perspective", Prof.
Hyakudai Sakamoto brilliantly disclosed the absence of true
foundations of global bioethics at present and impossibility ofthe supremacy of either western or eastern episteme inbioethics on the global level. He introduced an original principle(policy) called by him as 'bargain consensus'. To Prof.
Sakamoto's view, precisely this policy (which has been called
also as a "Social Tuning Technology"), solely is able to realise
the harmony in global bioethics.
At the same time, I am to agree with Soraj Hongladarom
who argues "…that decisions as how people from different
backgrounds are to co-exist with one another peacefully should
be made on an 'overlapping consensus' which is political innature and which is shorn of the metaphysical basis on what
constitutes the good life of the respective groups that enter into
the deliberation." (pp. 195-6). Prof. Sakamoto himself does not
object against the term "policy", insofar his advanced
methodology is the 'dialogue bargain policy' (p. 492).
Prof. Hyakudai Sakamoto has elaborated the entire
conception of the harmonious global bioethics by carrying out
the panoramic comparison of Western and Eastern civilisations
with the revealing of their essential features, and the ultimate
elaboration of the 'dialogue bargain policy' – effective
instrument in maintaining a sustainable world. He is truly afounder of the scientifically based global bioethics. At the sametime I am to stress that the concepts "Bioethics is Love of Life"(by Darryl Macer, 1998), "communication-in-trust andcooperation-in-trust" [by Hans-Martin Sass, 1994, (EJAIB,
2004)], and the "overlapping consensus" (by Soraj
Hongladarom, 2004) are in full accord with the 'dialogue
bargain policy'.
Likewise, it cannot be ignored that Van Rensselaer Potter,founder of the science of bioethics, has the similar predispositions in treating the global issues. In the 1999, 'Bridge
Bioethics', Potter's new term appeared referring to the key
article in 1970 and the book in 1971, in which bioethics was
described using the word bridge as a metaphor for the intention
to promote human survival (bridge to the future) and theintention to link science and philosophy (bridge between thetwo cultures). The cover of Potter's Global Bioethics (1988)
offers a definition of bioethics as "Biology combined withdiverse humanistic knowledge forging a science that sets asystem of medical and environmental priorities for acceptablesurvival." In other words, global bioethics was first described in1988 as a bridge between medical bioethics and ecologicalbioethics, in order to achieve a worthwhile long-range humansurvival. The development of specialized fields of applied ethics
is described in terms of the dilemmas that each specialty fails
to solve. Each needs to expand from their short-term dilemmas
to their long-term obligations by incorporating a holistic
bioethics.
It is a very significant thing that Potter's science of
bioethics is, in fact, – "the science of survival". Hence,
modern western bioethics (founded by Potter) is a teleologicalscience organized at the achievement of the ultimate goal ofsurvival. To survive – means to resolve the problems thatthreaten (have the pathogenic essence) a person's (and asociety's, mankind's) well-being. Potter "bridge to the future"aims at the conservation of the present (current) well-being of aperson and society. There is no, at all (both in Potter's andSakamoto's reasoning), the sense of "breakthrough" andmacro-evolutionary (emergent) "macroshift" (in Laszlo's
meaning).
Therefore, western ('western', traditional) and global('eastern') bioethics both are pathocentric, living in presentism,
acting in subject-object relation to a world ("to achieve aworthwhile long-range human survival", – V.R. Potter; and "tocontrol human evolution", – H. Sakamoto), and are basing on
adaptationism (microevolutionism, Darwinism), as well as bothare teleological disciplines aimed at the ultimate goal of survival(well-being) but lacking the system of own true philosophicalfundamentals – for the realisation of understandable (byeveryone) universal scientific activity. At the same time, eastern
global bioethics, the conception of which is elaborated andadvanced by Prof. Sakamoto is a true global bioethics, insofar
it really pursues the aim (presenting the adequate means) ofreaching the holistic harmony in the world "…harmonizing andbridging over all kinds of global ethoses, East and West, Southand North" (p. 491).
On the contrary, V.R. Potter was unconvincing inpresenting his holistic approach to global bioethics. The latter isnatural: Van Rensselaer Potter is an ingenious son of western
civilization (western anthropocentric episteme). Therefore, themeans as much of persuasion as of force were inherent to his

Eubios Journal of Asian and International Bioethics 15 (January 2005)
mentality. Acting in opposition, Hyakudai Sakamoto stresses:"Look at the reckless abuse of the words "human dignity" and"human rights" in the various texts of "world declaration"(including the UNESCO Declaration) and "world communique"during this period of time without any sincere reflection andregret on the mischief of European and American humanism
which eventually caused problems of Asian and African poverty
and distress." (pp. 488-489). Following this way of viewing, wemight concentrate our attention on the following judgment ofProf. Sakamoto: "We should now establish a new humanism,
and also cultivate new sciences and technologies without
human-centrism (italics mine. – K.K.), a new methodology tocomplement this new humanism, and also cultivate newsciences and technologies to control human evolution, adopting
the Asian ethos and wisdom to avoid the European excessive
inclination to the manifold natural artificial dualism." (p. 491).
Corollaries
We can treat bioethics from the three perspectives(dimensions): Western, Global, Cosmist.
1. Western bioethics – 'bioethics in essence', which
combines (organises) the entire number of natural andhumanitarian means: philosophical, scientific, cultural (of any
origin: Western, Eastern, Northern, Southern) – for the ultimate
achievement of a person's (society's, mankind's) survival (wellbeing). Western bioethics is a brainchild of Van Rensselaer
Potter, a true son of western civilisation (western episteme).
2. Global bioethics – 'biopolitics in essence', likewiseorganises the entire number of cultural vehicles – for theultimate achievement of a person's (society's, mankind's)
survival (well-being), but doing this on the principally different
basis: of a genuine holistic (peaceful and harmonic) basis –reconciling the all involved subjects and "reaching a 'consensus
of any kind', even though it might be quite unreasonable orabsurd." (Sakamoto, 2004, p. 492). Prof. Sakamoto claims:"Fundamental naturalism is pervasive in every Asian system ofthought… the new Global Bioethics should be 'holistic' incontrast to European 'individualistic'." (pp. 490, 491). It is
obvious that the true conception of Global Bioethics (due to its
substance and readiness) belongs to Prof. Hyakudai
Sakamoto, a ingenious son of eastern civilisation (eastern
episteme).
At any rate, it is worth mentioning, both western and global
bioethics are basically teleological (eclectic or inter-(cross)disciplinary) disciplines and directions of human (societal)
activity, insofar they are both aimed at the ultimate (ofmicroevolutionary character) goal of survival, naturally
attracting and combining, in this order, the use of the veryvariety of philosophical, scientific, methodological, culturaldispositions and means. All this signifies that both western
bioethics and global bioethics are rather the kind of politics thana science, insofar they both are lacking the own proper
philosophical substances and, hence, – the possibility ofrational (i.e. – universal) scientific activity.
Significantly, the both forms of bioethics (western andglobal) pass over in silence the evident fact that, inoverwhelming significance, the actual bioethical problems oftoday are man-made (anthropogenic) problems, in essence,
which arise from the unreasonableness (incompetence) of acurrent philosophy, science and man. We have, as a result,that the general sense of bioethics consists in correction of theconsequences of unreasonable activity of man. This is thedeepest paradox in the activity of a modern expert in bioethics.
Really, bioethics might reach (ay least, aspire to achieve)
natural-natural character of the activity and to realize universal
generating approach (by determining the development ofscience and practice) instead of taking up the duties ofsecondary (serving, instrumental) activity in the correction of
the lacks of unreasonable activity of man (society). What are
the factors that prevent experts in bioethics (all together) to put
forward the purpose of a philosophical substantiation and7

scientific (and practical) realization of universal bioethicalconsideration of the existing actual world – to exclude, in thebasis, the unreasonable activity of man? Is not it the true
necessary and cardinal destination of bioethics (if not bioethics,
then who?) – to integrate natural-science ("bios") andhumanitarian ("ethike") knowledge and to initiate the creation(and elaboration) of the required philosophical-anthropologicalbases and the development of the universal theory of aperson?
3. Cosmist bioethics – 'biocosmology in essence' – isprecisely the deliberate search for the universalist bases inbioethics, which might integrate 'bios' (natural sciences) and'ethique' (the humanities). Biocosmology might be developedon the fundamentals of Russian (Slavic) philosophy, especiallyon the basis of Russian cosmism. My variant of biocosmology,
an original Cosmist conception in biomedicine and bioethics issubstantively exposed in the EJAIB (2002-2004) and theProceedings of the ABC5 (2004). Its essential characteristic will
follow below.
We need universal philosophy (science) in bioethics"History is philosophy teaching by example."
Dionysius of Halicarnassus
To my mind, the really existing epistema (featured by Prof.
Sakamoto), Western and Eastern, are incapable per se toprovide the universalist bioethics with the needed foundations(universal in substance). Indeed, Western episteme admits theway of feat in spreading the ethical (humanistic) principles (by abrute force and under protest) in resolving the 'ethical'
questions (as it was stressed by Prof. Sakamoto and is anevident fact of current global life). Eastern episteme isinsufficient 'ex juvantibus' (if to value the consequences),
inasmuch as the ultimate result of Sakamoto's biopolitics(harmoniously acceptable "bargain consensus") takes placeeven if it is absurd. (To underline, once again, the ultimate
principle of "bargain consensus" has most likely a political, thanphilosophical (scientific) significance).
At the same time, if to follow the wisdom of Dionysius, wehave objectively and really (behind our philosophicalcontemplation) the series of indisputable evident, scientificallyverified truths. The first: our living world is one universal whole.
This truth is known at least since the discovery (in 1953) of thestructure of DNA by Watson and Crick. The second truth (inimportance): the one whole universal process of life on Earth(including humans and social organisations) has the cosmic
origin. Really, in all cases, the energy needed for life on Earthis coming from cosmos (chiefly, the Sun energy); likewise, all
the matter of Earth has the cosmic origination. The next andvery important evidence: the cosmic universal process of life on
Earth (Process or CEPLE, in my abbreviation) has the macroevolutionary essence: the origin of life, the origin of nucleusbearing protozoa; the origin of sexually reproducing forms; therise of sentient animals, with nervous systems and protobrains;
the appearance of cogitative animals, namely humans; further
occurred the historical emergence of families, social bodies,
communities, societies and civilisations; the next integrity
naturally should be the whole mankind.
From all this an inescapable conclusion follows; if the lifeon Earth has the macro-evolutionary substance, then the non(anti-)macroevolutionary approach is inadmissible andimpossible in philosophical and scientific relation. But thefundamentals of western and global bioethics and, accordingly,
the approaches of professors Potter and Sakamoto are bothanti-macroevolutionary, inasmuch as they both believe in the
microevolutionary (Darwinist, of continuous changes)
foundations of considering the universal evolution. Therefore,both Potter and Sakamoto uphold unnatural positions inphilosophy (science) – artificial, in the essence, and false inscientific relation. Not surprisingly, Prof. Sakamoto, whilecriticising "the manifold natural artificial dualism" of the western
episteme, himself puts forward the line of artificial (italics mine.

8

Eubios Journal of Asian and International Bioethics 15 (January 2005)– K.K.) control over evolution: "… demarcation between"natural" and "artificial" will be blurred, and therefore, we might
be allowed to "play God" in this third millennium" (p. 487).
Corollary: We sharply need a new episteme, which would
provide our philosophy, science and culture with the means of
natural-natural resolution of bioethical issues. This episteme,
as it follows from the above stated, might acquire thesubstance of health-centric, and the natural-natural andsubject-subject pattern of philosophic (scientific) exploration, –of integrating macro-evolutionary and microevolutionary
processesof a man's (any living subject's) healthy(wholesome, safe, satisfactory) ontogeny (the entire life span).
This sought for episteme likewise might have basically thefunctionalist essence, treating every living subject on Earth as
the function of Process. From this come my basic principles of
the Cosmist conception: Universal Functional Reductionism,
Basic
CosmistFunctionality,
theprincipleofCosmoBiotypology.
The major conclusion:
We have no right to deprive Process (one common cosmic
evolutionary process of life on Earth) and, equally, any living
subject on Earth (from a molecule – up to mankind, etc.) of his(her, its) emergent (macro-evolutionary) future. Every ontogeny(macro-evolutionary ontogenesis of every living subject on
Earth), as well as Process (CEPLE) are self-dependent in themacro-evolutionary ascent (development) and, hence,
independent from our viewing and treating the origins andmechanisms of universal evolutionary processes: it isunimportantly, whether we stand on the positions of Darwinism(evolutionism), Creationism, Panspermia hypothesis, Big-Bangconcept, etc. Process occurred and develops independently of
our consciousness. Process is, because it (he) IS. We candestroy it, but we cannot create it, insofar we are internalfunctional elements of this Process (CEPLE), with our (of everyman) inherent specific basic (Cosmist, in the term of my theory)
functionality. In the same way, every cell of a human'sorganism has its inherent basic (Cosmist) functionality, likemuscle cell, neurocyte, immunocyte, fat (adipose) cell, etc.
Therefore, we need a new cosmos-centric humanism –without fundamental anthropocentrism and naturalism(sociocentrism).
The Challenge of a Cosmist Universal Philosophy: From
Bioethics and Biopolitics – to Biocosmology"Bringing together and integrating the sum of the present time
and the past history impressions, it is possible, of course
schematically, to express an idea that the peoples of Asia
represent a kind of thesis, and Europeans - of antithesis, andthat the synthesis is needed which is still in deficiency... I
assume that we, Russians, most of all have the inherent
qualities of any kind for the achievement of this synthesis,though up to the present only the initial preparation to that isvisible".
Dmitrij I. Mendeleev (1905)
In reality, I likewise might confirm this judgment – thephilosophical potentials of the needed quality – for the new
synthesis in bioethics (as pre-dispositions – pre-paradigms),
first belong to Russian (but not Soviet!) philosophy, especiallyin the form of Russian Cosmism. The major unique property ofRussian philosophy consists in its personalising (precisely
personalising, but not humanising) approach to theconsideration of active human life. Russian personalism ischaracterized as energetic, activist personalism, expecting as
much self-dependency and activity as responsibility from aperson for the actions and the line of life as a whole. In evenmore exact expression, uniqueness of Russian philosophy andscience (and nuclear essence of the entire Slavic culture)
consists, above all, in ability to integrate cosmologic(universalising,whole-organising)andpersonalist(personalising), and also futurological approaches to an
evaluation of the position (active-evolutionary) of a man incosmos, i.e. - simultaneous and integrated activation ofphilosophical cosmologic, personalist and futurologicalfoundations. Russian universe is personalising universe. In theexpression of Kireevsky, "... the distinctive type of Russian view
on any order … consists in overlapping of personal selfdependency with integrity of the common order …" The reasonof a westerner "does not contain order without sameness".
The term "universal" has its origin from Latin universus(uni- + versus), i.e. turned to one. To my mind, we have, in
principle, two basic ways to reach the final aim of creating
universal philosophy as science. The first, morpho-centric way,
which totally dominates in the contemporary world-widescience, means the reduction of the entire infinite number ofliving phenomena to a basic element like a micro-organism(germ theory), cell (a cellular theory) or molecule, gene (amolecular theory and modern molecular biology), etc.
Morphocentrism leads to the subject-object study of the given
state of a living phenomena, mainly the disturbance of a normal
state (sickness, diseases, mental disorders, as deviations fromnormal values). Human health, herein, is basically assessedon the data of physiological investigation or the medical
certificate from a specialist in psychology (psychiatry).
Hence, it is unable, within morphocentrism, to take into
consideration the wholesome satisfactory (healthy) emergent
future for a living subject. Morphocentrism is totally based inpresentism and is pathocentric in essence. It investigates theeffects, and the causes of the effects (pathogenic events andoutcomes) in the past and present, but morpocentrism (orstructural-systemic approach) eliminates – from the area of
scientific exploration – the natural (cosmic, evolutionary,
healthy) course of events in the past, present and, equally, inthe emergent (macro-evolutionary) future of a subject’s (aperson's, first of all) healthy activity (wholesome, safe,
successful, happy life activity). Therefore, morphocentrism,
inasmuch as it leads to the study eventually of the given stateof a subject's existence (effected by the past and present
causes and aims), – evidently has the anti-evolutionary andsecondary essence, in relation to the natural evolutionary
course of events on Earth, serving the well-being of a subject(against the external pathogenic influences), but not acting asan agent of the natural evolution of Process (CEPLE) – cosmic
evolutionary process of life on Earth.
On the contrary, the proposed Functionalist (Cosmist,
functional-systemic) approach establishes the truth that every
living subject on Earth (primarily, a man) is a function of theultimate Process – self-evolving CEPLE. A Functionalist(Cosmist) methodology of attacking the issue of individual's
health (wholesome, safe and gratifying life activity) is definitely
a person-centric approach. In this, primarily a man discloses
his/her inherent personal route (vector) of the ascending(macro-evolutionary) implementation of the person's Basic
Cosmist Functionality (BCF), mainly possible at his or her
mature creative level of personal ontogenesis. Cosmist
personalist methodology realises truly universal approach tounderstanding and explaining individual's health, inasmuch as
every subject (a man) on Earth is, ultimately, the function ofProcess.
The latter thesis can be proved in a sophisticated line ofphilosophic and scientific arguments (please, see mypublications in EJAIB: 12(1), 13(1), 13(3), 14(2); and theProceedings of the Fifth Asian Bioethics Conference).
Concurrently, we have a plain mode of revealing this truth. In
fact, every human organism comes into the world from one thesame amount (number and mass of molecules –chromosomes) and one the same cell – zygote. As a result of
biological development, every cell of the every humanorganism has its Basic Cosmist Functionality (BCF) – to be amuscle cell, or fat (adipose) cell, or neurocyte, immunocyte,
etc. Then, how can it be (where occurs the interruption of thenatural logical line) that a human person 'loses' his or her BCF(as an organism, social and cosmic agent on the whole),Eubios Journal of Asian and International Bioethics 15 (January 2005)
although coming from the same genotype and the cell(zygote)?
Then, if the Cosmist foundation is true, i.e. – every man
has his/her inherent personal Basic Cosmist Functionality(being ultimately a function of one common whole cosmic
evolutionary process of life on Earth), we acquire a universal
scientific approach to the understanding and explaining every
individual's health (wholesome and gratifying fitness of every
living subject on Earth). The main point, herein, refers to theeffective assistance to a person in the: A) self-dependent
personal (re)discovery and the substantive realisation of his/her
BCF; and B) its adequate adaptation on the given macro-levelof a person's entire healthy ontogenesis. The whole (a. and b.)
is needed for C): the ultimate reach of the personal mature
creative level of man's ontogeny, constantly transcending (bygoing beyond, or rising above) biological and societal(societies) macro-levels – and the ultimate execution of a man's
specific creative contribution to Process's wellness.
Biocosmology, to my mind, might realise a bioethical taskof primary importance.
Conclusion: A New Vista in the Development of the
Behaviourome Project
All the three forms of contemporary bioethics arenecessary: 1. Western bioethics (bioethics) and Global
bioethics (biopolitics) are the means indispensable in therealisation of a person's (society, mankind on the whole) wellbeing at the given time and the condition. These two forms ofworld-wide bioethics have the absolutely necessary
microevolutionary significance, permitting the resolution ofcurrent problems with health (well-being and development) of ahuman being or society on the given personalist or societal(global) level. Significantly, both forms of contemporary
bioethics (western and eastern) carry the qualities ofmorphocentrism, presentism and pathocentrism, and, thus,
both have anti-evolutionary (so, unscientific) essence,
inasmuch as they both deny primarily the macro-evolutionary
character of the healthy (wholesome, happy) ontogeny of a
subject (man) on the whole – as the healthy 'process ofprocesses': the successful unity of micro-processes(adaptational, on every macro-level of a man's ontogeny) andthe macro-process (aimed at the ultimate realisation of his/her
BCF – on the mature creative level of a person's ontogeny).
In turn, Cosmist bioethics (biocosmology) gives back to theentire body of world-wide bioethics its (macro)evolutionary
essence. Hence, it returns to common bioethics the scientific(universal) status – by restoring the qualities of universal
systemic (cosmist, macro-evolutionary) functionalism andcosmist (subjective) evolutionism.
In reality, biocosmology attempts to integrate philosophy
with science, to recover to philosophy (ethics) the status of the'science of sciences'. That is possible, with reference to the
Cosmist conception, exclusively on the personalist level of a
man's (his or her) health (physiological-personal, societalpersonal, and cosmist-personal wellness and fitness), and,obligatory, in relation to the person's entire life - ontogenetic
process on the whole.
The introduction of biocosmology also serves the future
trends of Behaviourome / Mental Map Project. Here is impliedthat the insertion of Biocosmology might provide the
Behaviourome with the true basis for the realising of the great
aim and great challenge of mapping the human mind, proposedby Darryl Macer (2002).
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Sakamoto, H.: 2004. 'Globalisation of Bioethics – from the Asian
perspective. In Challenges for Bioethics in Asia'. The Proceedings ofthe Fifth Asian Bioethics Conference (ABC5), 13-16 February, 2004
in Tsukuba Science City, Japan / editor, Darryl R.J. Macer.
Christchurch, N.Z.: Eubios Ethics Institute, pp. 487-493.
Sass, H-M.: 2004. 'Asian and Western Bioethics: Converging,
Conflicting, Competing?' Eubios Journal of Asian and International
Bioethics 14(1): 13-22.

Body Donation – A needbased problem!
- Pushpa Dhar, M.D.,
Department of Anatomy, All India Institute of Medical Sciences,
New Delhi 110029, INDIA
Email: pushpa932003@yahoo.com‘Death is just a beginning of another life’ – Upnishads.

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Eubios Journal of Asian and International Bioethics 15 (January 2005)

This paper discusses an issue that is likely to emerge as a
topic of immense concern in context to Indian scenario in thenear future. The terms – Body donation / Anatomical donation /Body bequest- are interchangeable and imply the act of
donating the body after death to a facility for a noble cause(education/research purposes). Also, the term ‘donor’
emphasizes the ‘gift to be given away’. In the present scenario,
there is awareness to some extent among the masses
regarding organic donations such as blood donation, eyedonation, hair donation, organ donation and so on. However,
the term ‘Voluntary Body Donation’ is comparatively a recent
addition (in India) to the list of organic donations. Presently theterm ‘Voluntary Body Donation’ has become an accepted
option though for a small selected segment of the population
whereby the subject in complete presence of mind opts for
donating his/her body after death with the belief that the living
would be benefited by this act of his/her.
What makes ‘Body Donation’ a unique phenomenon?
Body donation is different from other organic donations ina number of ways. Some of the factors which make it different
from conventional organic donations include the following:
People from all walks of life can donate the body: The factthat people from all walks of life can donate the bodyirrespective of their religious beliefs, social status, cultural
bindings etc. attains importance especially in a country likeours which is known for its diversified culture and heritage.
There is no specified age bar: Unlike other organic
donations, there are no age limits for donating a body.
However, in some countries like US, the requisite age fixed fora donor has been specified as 18 years or above and theperson should be with a sound mind so that he/she is able tosign for himself/herself though in case of a minor, even theparents or the guardians can deed the body for the noble
cause.
No matching is required
Above all, there is no materialistic award for the donor!
But unlike other organic donations, the donated body is
disassembled without any attempt to reconstruct it! And yet it
enjoys the status of a high moral act.
The awareness regarding the subject matter demands
urgent attention due to ever increasing imbalance between the
demand for cadavers on one hand and their non availability on
the other. Whereas the mushrooming of medical schools andother such institutions all over the country contribute to theformer part of the equation, the latter part of the equation is
being determined by a host of factors such as social, legal,
psychological and so on. The end result is a demand – supply
mismatch of enormous magnitude with immediate adverse
effects on the quality of medical education and health related
research activities.
Importance of cadaver teaching / learning‘What we hear, we forget: what we see, we remember:what we do, we understand’. These lines clearly reflect theimportance of cadaver teaching / learning in anatomy (thescience that deals with the structural organization of the body).
Besides the potential to instill long lasting humanistic attitudes
towards patient care, the impact regarding structuralorganization imbibed through the three dimensional
visualization during cadaver dissection, remains unparalleled.
The age old dictum that ‘there is no substitute for human bodyin teaching human anatomy’ stands even today in spite of therevolutionary advancements and technical innovations
integrated into learning and teaching media over the recent
years (Virtual Anatomy / Visible Human Project etc.)
Anatomy, as such, forms the foundation for a number ofrelated courses. Dentistry, nursing, surgery, orthopedics andophthalmology are a few to name. Even the advanced imaging
procedures (CT, MRI, PET) rely completely on the anatomical
knowledge for proper interpretation of results. Hence the

cadaver as a teaching / learning tool forms the pivot aroundwhich the present day innovative courses dealing with life
sciences (medicine, biology, pathology, sports medicine,
rehabilitation sciences etc.) revolve.
The majority of medical programmes running throughout
the country are in continued need of anatomical material(anatomical gifts) in view of the far reaching pursuits
encountered in teaching and research. In a number of places,
the student - cadaver ratio (4-5 students : 1 cadaver)advocated by the governing bodies (Medical Council of India –MCI) is hardly met with owing to an acute shortage of
cadavers. In most of the medical schools, even more than thirty
students get to share only one cadaver for dissection. The
paucity of anatomical material is bound to affect the quality of
medical education and health related research projects. The
process of plastination is currently being used for preserving
the bodies in a form that emulates near natural one. Though
plastinated bodies / body parts cannot substitute the real
cadaveric teaching/learning completely, yet their contribution asreal teaching/learning tools cannot be underestimated. Public
display of plastinated bodies/body parts (to demystify thehuman body structure - Van Hagen’s Body Worlds – Moore andBrown, 2004) has gained widespread publicity. Though
presently, the process is an added demand on donated bodies,
however, in the long run, it could help to some extent to combat
the acute shortage of the anatomical material.
Awareness needs to be generated amongst the masses
regarding the donation of body to science as ‘an act that is
morally and legally justified’. In the long run, one act of body
donation benefits lives of so many other human beings! The
ongoing race between medical care becoming more technicallyoriented on one hand and medical education becoming more
procedure focused on the other, has further widened thealready existing gap between humanistic values andmaterialistic values.
Though, in a majority of cases, the objective of body
donation is service towards the society, yet there could be
examples where donations are made to simply escape theincurring large funeral bills or to avoid the obligation of non
caring relations. Hence, the procurement of bodies could either
be from voluntary donations or from unclaimed bodies. The oldhomes and beggar homes, in our country, could be thealternative sources for procurement of bodies provided they aregoverned by befitting rules and regulations. Equally importantin this direction is the identification of receiving centers. Suchcenters could be declared fit under well framed rules andregulations to receive unclaimed and non medico legal deadbodies for teaching / learning and research purposes.
Whatever is the source, of procurement, donation could bedenied in the case of autopsied bodies, decomposed bodies,
subjects with excessive obesity or extreme emaciation, suicidehomicide bodies or those bodies which have simultaneously
been used for organ donations. Hence, whether the body is
acceptable as an anatomical gift for study and research
purposes, is also determined by the circumstances prevailing at
the time of death.
Impediments
The bitter truth that ‘death is part of life’ has to be
accepted. Majority of people do not like talking about death anddying (fear psychosis). Many people think about body donation
but only few are able to accomplish it. Also, the reluctancetowards the subject matter is compounded both by theemotional as well as the moral bindings. The emotional
component has its basis in the bond that holds the family
members together and even the mere thought of disfigurement
or piecemeal dissection of a loved one shatters their mind.
Accordingly, the emotional involvements either on the part ofdonor itself or the family members might cloud the final
judgment. It becomes imperative under these circumstancesthat thorough discussions of the would be donor with his / herEubios Journal of Asian and International Bioethics 15 (January 2005)
family members regarding the decision to donate should be
encouraged. At the same time, the concept that dignity andrespect for those who donate is maintained at all the times, is amajor source of comfort for the survivors. Many people think
about body donation but only few are able to accomplish it.
Whenever a new idea or revised version of an older idea isintroduced to the society, there is every possibility of its getting
rejected or evoking a negative response. In very sensitive
matters, understanding of emotions and perceptions rather
than the philosophical and the rationale points determine theresponse generated. The age old saying goes ‘whatever isforced cannot be forceful’. The basic concern, whether theannounced idea projects a good image regarding the subject
matter or not needs to be addressed. In order to make theconcept more acceptable, the publicity policies regarding the
subject matter have to be tailored perfectly keeping in mind thearchitectural design of the society. With time and continued
perseverance, even the most vocal critics come to value theimportance of the subject matter.
No doubt, it is a marathon job to motivate people fordonating the bodies especially when the society is anamalgamated representation of diversified beliefs and blind
faiths. However, the development of science and technology
has provided the platform for logical and rationale thinking andthe logical basis could be used to overcome the religious
fanaticism and fundamentalism. Sensitization of masses
towards the issue is the key point to be focused at. This could
be achieved to some extent by building of trust among themasses. Trust needs to be built within the families as well as
amongst the donors. Emphasis has to be laid on sensitive
events like proper disposal of the body remains with respectand dignity after the proper utilization of the body for scientificstudy. Awareness programmes focusing on development of
medical science and education and its role in patient care cangenerate a good response among the masses. This isespecially true with a nation like ours where the literacy ratepresents major variations from region to region and from state
to state. In this direction, movements like ‘Deh-Rashtrarpan’launched (Ramesh Satpute at Nagpur, India) with the objectiveof encouraging body donations in the society, can act as eye
openers.
Problem solving
In the present scenario, the concept of ‘voluntary body
donation’ remains a virgin field as yet, with deliberate as well as
non-deliberate attempts to leave it untouched. This is the hightime when importance of the subject matter demands
understanding on priority basis for evaluating measures toenforce its wider dissemination. The need of the hour is toredress the problem by a multi prong approach.
Sensitization towards the subject matter is the key point.
Identification of the target groups for evoking meaningful
sensitization is an equally important subject. The universal
approach of ‘catch them young’ can help the younger
generation, who stand on the verge of facing innumerable
dilemmas, to come forward.
The government and nongovernment agencies, policy makers, educationists andintellectuals should work together to chart out information
dissemination programmes with the objective of targeting theright people in right time.
Counselling: Provision of guidance to people, who findthemselves in tough dilematous situations, is one of the primary
requirements which can help them in figuring out what to do.
However, the guidelines need to be tailored in a fashion thatthese are acceptable to masses. The propaganda should beembedded in such a language that it carries a universal
message (for young and old). Even though the collective action
proves more powerful than the individual action, the sense of
responsibility needs to be widened on the individual basis aswell. At the same time, individual responsibility and individual
decision making has to be given equal weightage.

11

Educational Centres and NGO’s will have to put in theirheads together to formulate the quantum of information whichneeds to be either communicated to the donors / families or
received. How well informed is the donor / family regarding
matters like handling of the body, approximate time period of
keeping the body or the rites to be carried out (end of life care)remains the matter of concern. Proper preservation of the bodywith maintenance of proper records for individual identity is amust. This holds importance as there could always be apossibility of the body / body parts being recognized by astudent, staff or laboratory personnel (McNeill PM et al., 2004).
Such concerns need to be addressed carefully and adequately
and confidentiality regarding identity needs to be maintained.
Legal aspects: Law enforcing bodies need to discuss andformulate laws which are feasible enough to be implemented.
As of today there are no foolproof laws especially in case of
unclaimed bodies to regulate this aspect. While formulatingsuch laws, innumerable factors inclusive of vast expansion of
the society, extreme climatic conditions, provisions for proper
dumping of bodies etc. need to be considered.
There is an obligation upon those who formulate various
policies to help those who do not have the needed expertise toacquire it. The combined efforts of national policy makers,
government and non government agencies can play animportant role in setting up the missions for assembling andpreserving the bodies followed by their utilization at the expert
hands.
References
McNeill, PM., Kerridge, IH. And Purdon, T. Loved ones body in the
Anatomy Laboratory, The New Anatomist, 277B: 10-13, 2004.
Moore CM and Brown CM. Gunther von Hagens and Body Worlds Part
2: The Anatomist as Priest and Prophet, The New Anatomist, 277B:
14-20, 2004.
Piyush Srivastava. What better way to live after death. The Hindustan
Times 12-12-2000.

Some Ethical Issues
Concerning Medical
Reproduction In Portugal- Prof.M. Cristina Rosamond Pinto M.D.,PhD
Human Genetics . University of Lisbon. Lisbon. Portugal- Susana Garcia da Fonseca M.D ; Catarina Ferreira deMorais M.S., Institute of Superior Sciences of the South .
Caparica. Portugal.
E mail: genetica_medica@hotmail.com
Postal: Genetica Humana. Rua. Amílcar Cabral, º.21-R/C “H”
1750-018 Lisbon. Portugal
Abstract
After a brief introduction regarding infertility through theancient ages up to the modern molecular techniques theauthors focus on some proposals issued by the Ethics Council
in Portugal which were discussed by the medical andscientifically community although there is a lack of legislation
regarding medical reproduction and related issues in Portugal.
Key words: reproduction; ethics; legislation; embryos; stem
cells.
Introduction
Infertility goes back to ancient times; paintings andsculptures found in pre- historic caverns link fertility toprosperity; indeed God’s commandment to Adam and Eve(according to Genesis ) quoted: “ Be fertile. Multiply andcolonize the world “.

12

Eubios Journal of Asian and International Bioethics 15 (January 2005)

In all civilizations the woman was the symbol of fertility but
the difficulties to conceive implied different medical attitudes
and had different feedbacks according to the woman’s status insociety. However the recognitions of masculine causes ininfertility ranks with the Egyptian pharaoh civilizations wheninfertility was not considered as a divine punishment but faced
as a disease requiring evaluation, diagnosis and treatment.
In the XIX and XX centuries there were remarkableadvances in the infertility area. The diagnostic field was marked
by modern imaging techniques, both ultrasound andendoscopes; hormonal assays and identification of genetic
anomalies; in the surgical area conservative as well as minimal
invasive treatments took place with special emphasis tomicrosurgery techniques and endoscope’s surgery; regarding
endocrinology reproductions new pharmaceutical tools led tothe manipulation of the woman’s “ endocrine axis” making
possible the suppression, induction and stimulation of theovulation; finally in medical assisted reproduction there is thepossibility of performing in vitro fertilization, sperm
microinjection, oocytes and embryo culture media, cryopreservation and different microscopic procedures involving
gametes and embryos.
With molecular genetics the pre-implantation diagnosis
opened the gates to potential embryo gene therapy. This typeof therapy has already been achieved in animal models.
Reproduction and Ethics
Medical assisted reproduction has its implications in theareas of biology, politics and bioethics. There is a great deal ofcontroversy going on but we are still lacking a formula toenable us to deal with all the ethic problems connected with thehuman reproduction. Infertility is nowadays a serious publichealth problem concerning around 20% of the worldwide
population.
The State of Art in Portugal
Similar to what takes place in other European countries
there are hundreds of thousands of Portuguese men andwomen suffering from reproductive problems and requiring
treatment. One way of opposing infertility is no doubt medicallyassisted reproduction. On this matter the National Council of
Ethics and Life for Sciences (CNECV) has already issued inJuly 2004 some revisited proposals which now need to bebacked by the Parliamentary members.
1 . Criticisms to the CNECV proposals.
The CNECV proposals are meeting with a great deal ofcontroversy from the medical and scientific Portuguese
community. For example the proposals refer that one should
avoid the production of extra embryos either than those meant
to be transferred. Thus normally in a 35 or 36 year old woman
the physician would only transfer two embryos and therefore
only two reproductive ovocytes would undergo further
development. With such a sparse number the ovocytes may
not evolve into embryos or may originate embryos which may
suffer a “ developmental blockage”!
The way to bypass this problem would be to culture all
viable embryos up to the 5th day of “in vitro” development
allowing the medical staff to select which embryo or embryos
would have a greater probability of implantation (one should
recall that only 40% of the embryos arrive to the blast cyst
thstage or rather the 5 day of the developmental stage ). In
short no proposal (according to the Portuguese medical point ofview) should define the number of ovocytes that will further
develop into embryos! One solution would be to limit the
number of embryos to be transferred to the uterus and to
freeze the remaining embryos. There is a significant number ofembryos that degenerates and such embryos should not befrozen ! The CNECV also states that “scientific research inhuman embryos is ethically legal but only when done in benefitof the embryos itself ! “. Now this statement doesn’t makesense! There is no such thing as “ research in benefit of theembryo itself ! “ The benefit will only exist within the context ofgene therapy ! But then again it won’t be “ research “! ;therefore this CNECV proposal is also very confusing !
The proposal also states that” the alternative and only faith
is that of the embryo destruction” ; now the medical class andscientists definitely do not” destroy embryos”; if an embryo
without quality to survive is transferred to a woman’s uterus itwill disappear ! This should be considered an embryonic deathand not an embryonic murder !
2 . Some conclusions to the State Legislation and theCommunity
The politicians and the lay people should have aknowledge about what type of research may or may not bedone with the non viable embryos. These embryos are
obviously rejected and this perspective should be consideredfrom the ethical, philosophical and even religious point of view !
At least 60% to 80% of the embryos have anomalies. In
the majority of the cases these embryos are not viable. Thisapplies to “ in vivo” as well as to “ in vitro” embryos. People
should know that al least 40% of the ovocytes and about 10%of the sperm have chromosomal anomalies. Matching thesewith the anomalies that may result from the reproductive
procedure, and the first embryonic divisions the conclusionthat the majority of embryos are not viable seems pretty much
obvious. If they are not viable they should be used to thebenefit of Humanity! Embryonic cell evaluation is indispensable
when using pre-implantation diagnostic techniques. Therefore
there should also be legislation about stem-cell research aimed
at the development of new cell and tissue based treatments fora range of diseases.
3. Latest developmentsth
On the 8 National Seminar of the CNECV (November2004) future proposals regarding stem cell research, preimplantation diagnosis and cloning was focused. Scientificallyand ethical issues viewed the stem cell as the "“hope cell"”having its birth in the crossovers of ideologies,
philosophies,religious and moral issues. The stem cell basic
properties, potential and limitations were focused; once again
the fetal origin implied ethical and logistic problems! Nuclear
somatic transference, the so called “cloning therapy” wasquoted as one of the forms of obtaining stem cells; it wasclarified that embryos not used for reproduction are normally
cryo-preserved for donation to other eventual couples or used
to derive stem cells to investigate their potential in cell – tissue
therapy. From the scientific point of view some of the CNECV
members favoured that “life does not begin with fertilization but
is evolving continuously among individuals and generations “.
On the other hand the philosophers seek the ethical andphilosophical dimension of the embryo quoting that “when theembryo is a laboratory tool it becomes an unexpected artefact
which one can’t easily discharge from a moral circle but thatsociety still doesn’t envision how it could be embraced by thissame moral circle!“. There was also an input of thebiotechnology enterprises focusing the use of stem cells in thedevelopment of new therapies. However catholic and board
members of the CNEVC qualified the stem cell as a “society
controversy” triggering a great deal of stress between scienceand ethics. Once again the legitimacy of abortion was broughtup! (Portugal is one of the few European countries whereabortion is illegitimate becoming a political issue between the
Parliamentary parties). These members admitted that year or
decades will be needed before reaching a consensus viewing
the recent opening of other European countries to the use ofstem cells. It was also quoted that the “resource to celllineages would imply using lineages resulting from embryos
destroyed by others rather than destroying our own embryos “!

Eubios Journal of Asian and International Bioethics 15 (January 2005)
4 – Position of the European Committee – EC- for HealthResearch
The dialogue between Ethics and Science according to theEC (represented by its director at the Meeting ) should bebased in the following criteria : a rational discussion viewing
three landmarks namely: 1- The benefit of the majority of thesociety (the utilitarian view ) 2 – “the Ethics of Human rights“ or3 – the Ethics of the Virtue - a partial compromise in favourof the vulnerable meaning of course the patient“ ! Different
points of views will “determine different solutions“, other criteria
will be decided by consensus with “ no place whatsoever for avoting by majorities considering the awkward way of making
decisions in Politics!”
In short, backing the opinions of other Portuguese
colleagues and scientists I feel that not only there is a lack oflegislation regarding the above mentioned issues (to be notedthat up to this date there is no consensus in Portugal about the“ status of the embryo”) but that Portugal is postponing such
legislation making it difficult for Portuguese scientists to carryon their research projects .

Artificial Reproduction
Technologies andEctogenesis- Frida Simonstein, BSc MSc PhD
Center for Women’s Health, Ben Gurion University of the
Negev. Israel; Dept. for Management of Health Care, Emek
Yezreel College. Israel.
Email: fridafux@netvision.net.il
Reproduction is highly valued in all cultural traditions; “BEFRUITFUL, MULTIPLY AND FILL THE EARTH” is a basic
command that appears already in the first chapter of the book
Genesis. This command has influenced the Judeo-Christiantradition ever since and today the right to reproduce isrecognized as a basic and fundamental human right. However,there have always been infertile couples; today medicallyassisted reproduction has solved many problems of infertility
among couples that have been unable to have a child naturally.
Hence, the development of artificial reproduction technologies(RTs) has enabled people to fulfill one of the most fundamental
rights. Yet this welcomed development has created, newconcepts of reproduction, challenging settled precepts andestablished moral values.
The first ‘tube baby’, Louise Brown, was born in 1987;
since then, many other babies were similarly conceived in apetri-dish. Today, conception of a human being is not restricted
necessarily to the Fallopian tubes, and/or inside a woman’s
body, and IVF has become almost a routine medical procedure(Silver 1998; Stock 2002). There has also been an
extraordinary development at the end of gestation: Incubators
were first used in order to save the lives of newborns in severe
distress immediately after delivery. However new knowledge
and improved technology have made it possible to redefine thelimits between viable and non-viable newborns. Today,
incubators may keep embryos of just 500 grams that may havespent only 24 weeks inside a woman’s womb (Sills 2003).
Between the fertilization of the ovum (even if this happens
in a petri-dish) and delivery (even if this happens prematurely)
there is, however, a significant and critical gap, which atpresent can only be carried out inside a woman’s womb. This
indispensable stage in embryo development together with IVF
technology has produced a new concept of ‘host’ mothers since
only a woman’s womb can provide the right environment for anembryo.’ Host mothers’ have already solved the problem for
women who because of physiological difficulties cannot

13

become mothers, or alternatively, for homosexual male couples
that may want to rear a child. The notion of ‘host mothers’
however, has created difficult psychological situations for theparents involved and sometimes difficult questions to beresolved by the legal system (Daniels 2002).
There is no alternative for a woman’s womb today;
however, it is not unreasonable to think that the idea of ‘host’
motherhood along with due research and improved
technologies may result in the development of the artificial
womb (Smith 2002; Butler 2002; Bailey 2003; Mckie 2002; Rae
2002) and eventually, ectogenesis – full gestation outside thewomb (Harris 1998). Such a scenario is still hypothetical; it has
been used only in science fiction horrors in both novels (Aldous
Huxley’s ‘Brave New World’ for example) and movies (George
Lucas’ ‘Phantom Menace’). However, this idea also appears asa matter of fact in some thought experiments (Strong 2002);
others regard gestational surrogacy as an actual necessity‘only’ until the artificial womb is fully developed (Ber 2000).
To overcome the existing gap between both ends ofgestation will not be easy; and an artificial womb still does notmean full ectogenesis. But the development of novel RTs dueto the desire to procreate is extreme. These developments
have already driven us beyond the theoretical limits of ethics,
and formidable work has been done to keep pace reaffirming
and re-defining moral values (Glover 1984; Harris 1998; Heyd
1992). But the ethical legal and social implications of fullectogenesis, seem to be a step in RTs that may challenge
again almost all universal human values and ethical principles;and, we may now find ourselves confronting full ectogenetic
technology before we understand its social consequences,
worked out an ethical framework and have had time toelaborate appropriate legal boundaries. Equally, there is therisk that without working out properly the ethics, the social andlegal implications of ectogenesis we might apply old precepts toan entirely new problem (Hare 1985).
This paper addresses what appear to be the next steps in
RTs, namely the artificial womb and ectogenesis. I will focus
mainly on two points: the actual development of an artificial
womb and conventional roles of women in reproduction.
The artificial womb.
IVF has permitted to disconnect the fertilization processfrom the womb that will actually host the fetus. Hence, the ideaof surrogate motherhood has become possible. But there havealso been cases of pregnant women in persistent vegetative
state [PVS] who have reportedly been kept alive until the childis born (Akabayashy and Morioka 1991); thus furthering theidea that the womb is the organ that incubates babies andwhich just happen to be inside a woman's body. There isalready a suggestion to permit the use of wombs for surrogate
gestation in cases of PVS, after modifying the organ donation
card to include also these instructions (Ber 2000). It is not theaim of this paper to discuss Rosalie Ber’s proposal; however,for the purpose of this paper regarding the advent of
ectogenesis, Ber’s words merit closer attention. She writes:
In view of the de-personalization of the gestationalsurrogate mother who functions as a ‘womb for rent’ … why not
permit using the wombs of women in persistent vegetative state[PVS], female bodies kept viable by artificial means, until
technological perfection of an artificial womb is achieved? (Ber
2000, my italics).
Ber appears to be certain the technological perfection ofan artificial womb will be achieved, eventually. Of course, shemight be wrong, but Rosalie Ber, obviously well acquainted
with the subject, explains further:
The technological perfection of an artificial womb is still in
its elementary stages. Today’s technology enables maintaining
the first 2 weeks of the life of a pre-embryo in vitro, as well as
maintaining 24 week old premature newborn babies in neonatal
intensive care units (albeit with considerable morbidity andmortality) an appropriate artificial womb is needed to bridge at14

Eubios Journal of Asian and International Bioethics 15 (January 2005)

least the 22 weeks in between. To improve survival the artificial
womb it needed for full gestation – i.e., an additional 38 weeks(Ber 2000, my italics).
From these words some would perhaps feel relieved, forthis shows clearly that the artificial womb is not yet available.
Others however, may understand that Ber more than merely
hints about the actual development of this new technology. Ber
uses the words ‘need’ regarding artificial wombs - several
times. Basically, ‘need’ is the first step by which any newtechnology develops and potential profit fuels further
development. Surely, the 22-weeks gap might be difficult toovercome and will not occur in one step; but neonatal care,joining other research areas such as gynecology, embryology
and stem cell research may finally end up in ectogenesis.
Moreover, the development of an artificial womb may not
be controversial because it would center at improving neonatal
intensive care. There is already a database that tracks
outcomes for 4,127 babies 401 to 500 grams. This weightgroup of micro-preemie is considered ‘experimental’ (mortality
in this group approached 90%); however, some believe that an‘artificial placenta’ can be used. Jack Sills from the Intensive
Care Nursery, University of California for instance, observes
that,[i]t would be ideal to continue the in uterus environment,
keeping the premature infant in a warm water bath (free of
infection) attached to its artificial placenta. Under ideal
physiological conditions the premature would grow and develop
normally, free of injury (Sills 2003).
Sills adds cautiously that he does not know if this idea ‘isever going to make its way’; but if it does, there will be little
disagreement for using this new technology if it would mean
avoiding morbidity, mortality and improving neo natal care.
Infertility and the 'womb factor'.
Whilst it would be difficult to find opponents for developing
new ways of care for improving survival and prognosis for'premies' and even for ‘micro-preemies’, paradoxically, thebeginning of gestation is viewed very differently: Research on
human embryos after the 14th day of gestation is not permitted
in most countries, yet embryo research in other mammals is not
restricted (Knight 2003).
Moreover, today universal rights such as the right for
reproductive freedom and the right for privacy have dictated in
the US, for instance, constitutional laws that may allow the useof ectogenesis; the framers of such laws did not haveectogenesis in mind when they developed them (Hibbert2003). Besides, should the desire and the basic right toprocreate be solely restricted when infertility results from the socalled ‘womb factor’? This kind of infertility can be due tocongenital absence of the womb, primary or secondary
anatomo-pathological malformations of the womb, and surgicalremoval of the womb for various reasons, myomatous uterus
and multiple spontaneous abortions (Sperof, Glass and Kase
1994). In this type of infertility both partners usually produce
normal gametes, but the only way today these couples can
procreate is with the aid of another woman’s uterus. Today thiscan be possible only using a gestational surrogate.
Some countries (the US, for instance) permit private
surrogate agreements and do not intervene; other countries(Israel) have formulated clear legislations for surrogacy; stillothers (Canada) have formulated clear legislation against
surrogacy. The Canadian law also has ruled out any researchthat may 'lead' to Ectogenesis. However, ectogenesis may be
the answer for those who cannot reproduce because they lacka womb, for both infertile women and homosexual couples.
Moreover, ectogenesis might also appeal to women (andmen?) who are perfectly normal. Women who want to develop
a career, women that have already developed one and havebecome too old to bear a baby naturally; finally (or firstly?) to‘just’ ordinary women, who until now have not had anotherchoice but to become pregnant if they wanted to have a child.

This would certainly imply a revolution in RTs far from the more‘conservative’ revolution presently happening in this area.
Present RTs: back to the womb.
In the bible the word ‘woman’ is used interchangeably withthe word ‘‫ ’רחם‬which means ‘womb’ the translation of thesepassages to English uses the word ‘girl’ instead (Judges, 5,30);. However, RTs and especially surrogate gestation where
the gestational surrogate functions as a ‘womb for rent’remarks vividly and unavoidably that women may still beperceived - and used - as wombs on legs. For RTs the womb
has become detached from women bodies, the discussion
focusing on the fetus and the future child (Stacey 1992). The
womb reappears as an organ inside a woman’s body only inthe context of the abortion. RTs may have also encouraged
women to assume further health risks; yet, reproductive
hazards have traditionally been viewed as women’s fate andtherefore - taken for granted. Candidly in this view, some
explain that ‘maternity is not a disease’ but, ‘an essentialfunction that women fulfill for the survival of our species’ (Cook,
Dickens and Fathalla 2003, 396). The problem with this(correct) definition of maternity is that although this is not adisease, this is not exactly a very ‘healthy job’ either (I will
return to psychological effects in a moment). Although during
the last century women’s death during or immediately afterlabor has been dramatically reduced at least in the developed
world, pregnancy and birth still compromise women’s health.
The potential dangers and actual burdens of maternity havebeen conveniently camouflaged under mystification anddecorated further with motherhood appraisal. But the unspoken
truth is that women had to accept their role in reproduction
because there was not another choice; surely it was preferable
to perform the necessary but hazardous task under the
incentives of ‘added value’.
Future RTs: escaping the womb?
Most tellingly, in Jewish prayers, a man thanks god eachmorning for not having made him a woman. By contrast, awoman thanks the almighty for having made her ‘as HE
wishes…’. Obviously, the anonymous writer of these prayers
understood the value of being spared the burdens and dangersof ‘womanhood’; equally, he knew nothing about ‘politicalcorrectness’ (although the ‘orthodox’ interpretation of theseprayers is the number of commandments incumbent on men as
opposed to the fewer numbers on women, slaves and nonJews). The advent of contraceptives gave some women theopportunity to escape partly from their fate as the carriers of thehuman womb. Some women welcomed this advance of
scientific knowledge in order to plan a family; a new way of life
begun for women, in an era in which their womb stopped ruling
absolute in their lives. Yet, women could not avoid all
pregnancies, if they still wanted a child. Would women now
want to embrace artificial womb technology if available (andsafe)? This would allow women to avoid the burdens and perilsof a pregnancy and yet enjoy parenthood - as men do. But
whilst this answer may appear satisfactorily unproblematic, it
raises immediately a second question: if women choose to walkout from their traditional function as the carriers of the humanwomb - would it be wrong? Of course, in this complex issue
there would be many other questions (one of the most puzzlingquestions is that men might not need women for reproduction
purposes) but for the purpose of this paper I will focus on
women’s perspective.
Dominant discourses.
Well-established beliefs would certainly play a central rolein answering any questions in this issue. Today motherhood isvalued rhetorically (even though it has little material and social
status) non-motherhood is defined as ‘lesser’; equally,
dominant discourses concerned with expectations of women,

Eubios Journal of Asian and International Bioethics 15 (January 2005)
the value of biological identity and power of medical science
have joined and support each other (Letherby 2002). The firstalmost unquestionable assumption is that motherhood andnon-motherhood is a significant difference in women’s lives(Dowrick and Grundberg 1980). This most probably, is true;
yet, women have traditionally been so deeply conditioned intomotherhood that non-motherhood has practically been a nonchoice. As a female physician explains:
It sounds like I was deciding to have a baby for this reason
or that. The fact is that I never decided at all I would or I would
not have a baby. I never consciously felt I had a choice. I
always assumed I would get married and have a child. It waspart of a sequence that was already set up for me. I just knew I
would be a mother. Every woman was. …Having a child is still
so expected of us, so programmed into our development…
(Friday 1979, 433).
Another belief is that women who do not conceive are‘desperate’ women; yet many women may play this role if theymust, in order to get a child; however, whilst women want achild, it is not necessarily a pregnancy that they want (Letherby2002). We may find this quite surprising; yet men also enjoy
parenthood, without having necessarily to become pregnant.
Although some men may claim that they would like to‘experience motherhood’ this is easily said because they know
they cannot.
Top women and novel RTs.
In 1999, Rosalind Coward suggested that “we need tounderstand how people are living their lives and making theirchoices without preconceptions about men being one thing andwomen another” (Coward 1999, 219). Clearly however, men
are one thing; by contrast, women, markedly, are still a very
different thing: in labor wages, in power and in academic rungs;
and, in their extremely demanding reproductive role. Equally,
there is a clear connection between women’s inequity and theirnecessary role in reproduction.
The higher price women pay due to their role in
reproduction may be seen better from the perspective of
women who have ignored the ‘ticking clock’ of the reproductive
years in order to make it to the very top of their careers: 42
percent of women in corporate America are childless at age 40
compared with 25 percent of men. But only 14 percent of
women ‘planned’ to be. This means that a large proportion ofthese women have become childlessness as a ‘creeping nonchoice’. Moreover, whilst almost half of all professional womenare childless at age forty, the more the woman succeeds in her
career the less likely is that she will have a partner or a baby.
For men, the opposite is true: the more successful the manis professionally, the more likely it is that he will be married withchildren (Hewlett 2002). This is hardly surprising, because at
the age of forty, men are still in their fertile prime and for many
years - while women at this age have almost reached the age
limit for a successful pregnancy. So even though women may
have successful careers, the price that too many women are
required to pay in order to reach exactly the same goal as men
is much higher. Women thus, may find themselves trapped by‘the womb factor’ sooner or later, in one way or the other.
Ectogenesis therefore, if safely worked out, may havegreat appeal to women who want to pursue a successful career
without being obstructed by their biological clock from having
simultaneously a successful pregnancy and a child. Some
women (but not only) might welcome the advent of
ectogenesis; other women (but not only) may feel highly
threatened by this prospect. While may be inclined
automatically to overrule the idea of ectogenesis, the idea
contains some merits, particularly related with women's healthand equity. If this is so then, as with any other technologicaldevelopment, any danger should be clearly defined.
Acknowledgments to Prof. Shimon Glick for his helpfulcomments on this paper.

15

SourcesAkabayashi A. and Morioka, M. 'Ethical Issues Raised by Medical Useof Brain-Dead Bodies in the 1990s.' Biolaw 1991. 11: 531-8.
Bailey R. 'Babies in a Bottle. Artificial Wombs and the Beginning of
Human life.' Reasononline August 20, 2003
http://reason.com/rb/rb082003.shtml Accessed 30.12.2003.
Ber R. ‘Ethical Issues in gestational Surrogacy’. Theoretical Medicine
and Bioethics. 2000. 21: 153-169.
Butler C.A. ‘Ectogenesis Solution to Abortion’ University of New
Mexico. Daily Lobo Newspaper. Feb. 20 2002.
Cook R., Dickens B.M. and Fathalla M.F. Reproductive Health andHuman Rights. NY: Oxford University Press. 2003.
Coward R. Sacred Cows. Is Feminism relevant to the New Millennium?
London: Harper Collins Publications. 1999.
Daniels C.R. ‘Between Fathers and Fetuses: the Social Construction ofMale Reproduction and the Politics of Fetal Harm.’ In, Ethical issues
in Maternal-fetal Medicine. Ed. Dona L. Dickenson. Cambridge:
Cambridge University Press. 2002:113-30.
Dowrick S. & Grundberg S. Why children? London: The Women’s
Press. 1980.
Friday N. My Mother, Myself. London: Harper Collins Publication.
[1979]1994.
Glover J., What sort of people should there be? London: Penguin
Books. 1984.
Hare R. M. ‘In Vitro Fertilization and the Warnock Report’. In, Ethics,
Reproduction and Genetic Control. NY: Croom Helm. 1985.
Harris J. Clones, Genes and Immortality. Oxford: Oxford University
Press. 1998.
Hewlett S. A. Creating a Life. New York: Talk Miramar Books. 2002.
Heyd D. Genethics. California: University of California Press. 1992.
Hibbert M. ‘Artificial Womb Technology and theConstitutional Guarantees of Reproductive Freedom.’ The Center for
the Studies of Law, Science & Technology. Arizona School of Law.
2003. http://law.asu.edu/Programs/SciTech/Commentaries/ArtificialWomb-Hibbert.aspx. Accessed
30.12.2003.
Knight J. ‘An Out of Body Experience.’ Nature 2002. 419:106-7.
Letherby G. 'Challenging Dominant Discourses: Identity and Change
and the Experience of ‘Infertility’ and ‘Involuntary Childlessness’
Journal of Gender Studies. 2002. 11:277-88.
McKie R. 'Men Redundant? Now we don't Need Women Either.' The
Guardian. Feb. 10, 2002
http://observer.guardian.co.uk/international/story/0,6903,648024,00.h
tml. Accessed 30.12.2003.
Rae S.B. 'The Advent of the Artificial Womb: A Prospect to Be
Welcomed?' The Center for Bioethics and Human Dignity 2003,
http://www.cbhd.org/resources/reproductive/rae_2003-01-29.htm#fn.
Accessed 30.12.2003.
Sills J. 'Understanding Catastrophic Health Care Exposures
Neonatal Intensive Care — How did We Get Here and Where Are
We Going?' American Re-HealthCare Symposium 2003.
http://www.amre.com/hc2003/summaries/sills.htm. Accessed
23.03.2004.
Silver L. Remaking Eden, London: Orion Books. [1998] 1999.
Smith M. ‘Artificial Womb Sparks Ethical Debate on Campus’. Feb. 14
2002.
www.ocally.com.issues/2002Spring/021402/debatewomb.html..
Accessed 30.11.2002.
Sperof L. Glass R.H. and Kase N.G. Clinical GynecologicthEndocrinology and Infertility. 5 edn. Baltimore, MD: Williams andWilkins. 1994.
Stacey M. ‘Social Dimensions of Assisted Reproduction.' In, Changing
Human Reproduction. Social Science Perspectives. Ed. Meg Stacey
London: Sage Publications. 1992.
Stock G. Redesigning Humans. London: Profile Books. 2002.
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Cambridge: Cambridge University Press. 2002:17-36.
--- Judges, 5, 30. The Bible.
--- Jewish Prayers (Orthodox Version).

What’s Morality Got to Do
With it? The Need for16

Eubios Journal of Asian and International Bioethics 15 (January 2005)

Principle in Reproductive
Technology and Embryo
Research- James A. Rice 1
Assistant Professor, Department of Philosophy, Lingnan
University, Hong Kong.
Email: rice@ln.edu.hk
Abstract
Recent advances in biology hold out the real possibility ofsignificant progress in the treatment of disease. At the sametime however these technological discoveries have posedserious challenges to policy makers, the decision by the UK
Court of Appeal in Zain Hashmi being a case in point. Judges
and legislators have traditionally tried to apply principles ofjustice in the matters that lie before them. Future issues thatinvolve genetic technology have the potential to involve morethan this since they imply an imperative to redefine ethicalperimeters. However the new genetics goes beyond this andnecessitates redefining human perimeters as well. This paper
considers a position broadly known as consequentialism – inwhich outcomes are to be as good as possible - and argues
instead on behalf of an approach to bioethical issues which
demands consideration of the fairness of the procedures
employed.
Within the last decade, dramatic advances in the field ofbiotechnology (including the Human Genome Project, cloning
and stem cell therapy) have raised the prospect of new andradical approaches to curing disease. These developments
have also led to significant breakthroughs in the field of humanreproductive technology. Bryan Appleyard has recognized thefull significance of this and has described the modern genetics
project as being nothing short of “a unique combination ofphilosophy, science and technology that confronts humanitywith the most fundamental questions, our answers to which will
determine the human future.”2
Genetics today places us at a vital moment in humanhistory where we can choose not just how we are going to live,
but who we are going to be. It is a big global moment, but it isalso an intimate, human moment. It affects not only politics,
economics and ethics, but equally the most private aspect of
our lives. Historically it is unprecedented. 3
There is no question that these discoveries have been at
the center of an insatiable quest for knowledge both in terms ofscientific importance as well as popular interest. However after
25 years since the first test tube baby was created, these samescientific breakthroughs have forced legislators, judges,
academics as well as those on the edge of medical research toconsider a foundational ethics setting out normative perimeters
into such areas. Indeed the issues that the new genetics bring
involve more than this since they imply an imperative toredefine ethical perimeters. However the new genetics goesbeyond this and necessitates redefining human perimeters as
well. Furthermore, events do not have a habit of waiting forconsensus to be reached about a possible ethical foundation
for genetic research or treatment. These issues are forcing
courts to deal with them as they develop from these same
technological advances.

The recent Court of Appeal decision in the Zain Hashmi
case is but one instance where conflicting interests resulting
from recent medical advances have called for the interpretationof formal rules concerning this rapidly growing and at the sametime controversial area of scientific endeavor.4 While it is not in
doubt that laws and regulatory guidelines have already beenrefined as a result of the rapid developments in biotechnology,
the underlying principles upon which such legislation is
ultimately to be based, matter greatly. There is no denyingthat the task of doing so is not an easy one. To quote Lord
Phillips of Worth Matravers MR in Hashmi, “No one can doubt
the difficulty of legislating against a background of fast-moving
medical and scientific development. It is not often that
Parliament has to frame legislation apt to apply todevelopments at the advanced edge of science.” 5 And thesame can be said about judges when confronted by similar
developments.
Furthermore, these issues are set not merely against aframework of local or national jurisdiction but within a global
one, in which individuals increasingly will seek medical
treatment or therapy in whatever location best suits their own
perceived needs. It is no longer feasible for legislatures orcourts to shut the door on a given procedure or treatment withthe expectation that either the technology or the ethical issues
that underlie it will go away.
It is vitally important then, that in response to thesedevelopments, there be an extensive and rational discussion inwhich the full implications of these emerging technologies be
considered.
This paper attempts to contribute to this
discussion at a time in which there is great excitement
surrounding the prospect of enhancing the quality of human
life, but along with this, a growing level of anxiety surrounding
not only the implications of science, but over the future of ourhumanity. I will attempt to focus on the ethical and legal
considerations which have arisen as a result of certain related
biomedical discoveries, including embryonic stem cell research,and specifically, human leukocyte antigen testing (tissue
typing). In this context, I will also consider the wider issues thatthese technologies imply in terms of consequentialist anddeontological approaches to justice.
The Zain Hashmi case
The facts in R (On the Application of Quintavalle) v Human
Fertilization and Embryology Authority (hereinafter Zain
Hashmi) are as follows: Zain Hashmi was a four year old boy,the fourth of five children born to Raj and Shahana Hashmi.
Zain had been born with a serious blood disorder known asbeta thalassaemia major (BTM). In order to stay alive, herequired regular and intensive treatment including a cocktail ofdrugs and blood transfusions. However even given thistreatment, medical experts determined that his long-term life
expectancy was not good. Mrs. Hashmi sought help fromphysicians who informed her that stem cell tissue taken fromthe umbilical cord of a sibling with matching genetic material
could be used in a bone marrow transplant in order to treat
Zain’s illness. Wishing to find a suitable match, Mrs. Hashmi
subsequently conceived, however prenatal testing found thatthe embryo also carried the BTM gene. She aborted and later
produced another child which was carried to full term.
Unfortunately the baby in this instance was not a suitable
genetic match for his elder brother, Zain.
Mrs. Hashmi and her husband then explored the possibilityof employing in vitro fertilization (IVF) together with a newer
technology termed, “pre-implementation genetic diagnosis”(PGD). Here, fertilized eggs created in a laboratory are1

I am grateful to Jean Bethke Elshtain for the title. I am especiallyindebted to Professor James A. Clapp for comments which he offered
to me during the preparation of this paper
2
B. Appleyard, Brave New Worlds: Staying Human in the Genetic
Future (Harper Collins 1999) p. 3.
3
Ibid.

4
R (On the application of Quintavalle) v Human Fertilization andEmbryology Authority, [2003] All ER 257; [2003] 3 WLR 878.
5
R (On the application of Quintavalle) v Human Fertilization andEmbryology Authority, [2003] All ER 265-66.

Eubios Journal of Asian and International Bioethics 15 (January 2005)
screened first for the genes that carry the disease, and then inorder to determine whether the embryo is a genetic match with
the intended recipient. The screening is done approximately
three days following the IVF procedure at a stage where theembryo has divided into eight cells, one of which is removed
and tested with a genetic probe. Here the DNA sequencetaken from the cell is tested for tissue match and for thethalassaemia disorder. This process involves the use ofproteins called, “human leukocyte antigens” (HLA) morecommonly referred to in the literature as “tissue typing”.
In order for this process to be carried out, the relevant U.K.
legislation, the Human Fertilization and Embryology Act (1990)
required that a license be issued by the Human Fertilizationand Embryology Authority (“the Authority”) the statutory body
empowered to oversee and regulate matters relating to human
fertility and genetic screening.6 In February 2002, the Authority
announced that it would issue a license relating to this matterconditional upon several restrictions.
These guidelines
included inter alia that the condition of the child to be treated
was life threatening, that the embryos to be tested should also
be at risk from the same condition affecting the child, that(presumably in other cases) the treatment should not be
offered where the intended recipient is a patient, that only theumbilical cord be used in the treatment, and that embryos
should not be genetically modified in order to find a tissue
match. 7
Mrs. Hashmi made two attempts to conceive a child
employing both in vitro fertilization (IVF) and theaforementioned screening process, PGD. However, both ofthese attempts failed at producing a pregnancy. In December
2001, the claimant, Mrs. Josephine Quintavalle acting on behalfof the group, Comment on Reproductive Ethics (CORE) sought
and obtained permission to judicially review the Authority’s
decision granting the license. The decision issued by Maurice
Kay J. in that same month quashed the decision to issue thelicense permitting the continued genetic screening of embryos
for tissue suitability.8 In setting out its decision, Maurice Kay J.
stated “[t]he task of the court is legal rather than ethical”. 9
Instead, the court based its decision on the grounds that first
genetic analysis of a cell taken from the embryo involved the“use of an embryo” requiring a license under the act. The
second question before the court was whether the analysis of acell for tissue genetic screening and tissue typing “necessary
and desirable for the purpose of providing treatment services”
under the act. 10
The court found that regarding the first question, a license
was necessary since the procedure did involve the use of anembryo. Regarding the second issue, the court applied a strict
definition of applying tissue typing to the ability of a woman tocarry an embryo after implementation. It was found that theprocedure did not meet the statutory criteria of being“necessary or desirable for assisting women to carry children.”
11
The Authority appealed against the decision.
The Court of Appeal decided that the lower court had erredin law by applying too narrow a construction of the definition of“treatment services”. The court went on to hold:
Where the object of the treatment is to enable a woman tobear a child confident that it will not carry a heredity defect, anembryo will only be suitable for the purpose of being placed
within her if it is free of that defect. PGD is thus designed tosecure that that embryo is suitable for that purpose.12

The court also pointed out that “[w]hen the Act was passed
women who had reason to fear that they would give birth tochildren with genetic defects were probably the only section of
the population for whom it was envisaged that IVF treatment
could be justified on this basis”. 13 In its conclusion, the court
observed that times had changed considerably since thepassage of the Human Fertilization and Embryology Act.
Establishing that the purpose of the treatment was to (a) create
a set of embryos, (b) screen the embryos for instance ofgenetic defect and (c) screen the embryos for the “desired
characteristics” of tissue compatibility with his elder brother, thecourt argued the following:[W]hether the PGD has the purpose of producing a childfree from genetic defects, or of producing a child with stem
cells matching a sick or dying sibling, the IVF treatment that
includes the PGD constitutes ‘treatment for the purpose of
assisting women to bear children’. 14
As in the initial judicial review, the tone of the decision by
the Court of Appeal was very much set by Pannick QC(appearing for the Authority) who asserted that, “the issue(before the court) is not one of ethics but of statutory
Indeed, statutory
construction (emphasis added)”. 15
construction (and not ethical questions) provides the basis
upon which this case is framed. It would seem then that thedecision by the court was very much founded upon aconsequentialist approach, in other words, that the decision
was based on standards that tend to consider the kinds ofresults that it tends to produce. 16
It is understandable that in this particular case where thecourt was faced with a decision that had the potential to savethe life of a four year old child, the court felt compelled to rule in
the way that it did. But the fact that the court chose to ignore
the moral issues involved is significant. Although judges may
be reluctant to deal with moral principles in their decisions,
there are times when such consideration becomes necessary.
Lord Justice Hoffman’s judgment in Airedale NHS Trust v Bland
stands in marked contrast to the reasoning in Hashmi. In
Bland, the House of Lords was asked to decide on whether toallow the withdrawal of life-support treatment. Here, Anthony
Bland, a 21 year old man had been put into a persistentvegetative state some four years earlier as a result of being
suffocated during the Hilllsborough football stadium tragedy.17
In his decision Hoffman sets out the reality of the moral issues
that confronted the court as well as the public:
People are worried, perhaps not so much about thisparticular case, but about where it will lead. Is the court toassume the role of God and decide who should live and whoshould die? Is Anthony Bland to die because the quality of life
is so miserable? Does this mean that the court would approvethe euthanasia of seriously handicapped people?…This is not
an area in which any difference can be allowed to exist
between what is legal and what is morally right.18
In continuing his reasoning Hoffman set out to insure thatthe principles on which the judgment was based would not leadto “morally unacceptable decisions in the future”. He did so byconsidering the foundational principle of the sanctity of life
along with another fundamental moral principal, that of the19
In upholding a
respect for individual human autonomy.
decision to withdraw life-support, Hoffman acknowledges that
13

Ibid.
[2003] 3 All ER 271.
®
[2003] EWCA Civ 667; [2004] QB 168; Online. LexisNexis
Academic. (21 July 2004).
16
D. Parfit, Reasons and Persons (Oxford UP 1986) 24-5. “There is
one ultimate moral aim: that outcomes be as good as possible.”
17
Airedale NHS Trust v Bland, [1993] 1 All ER 821.
18
[1993] 1 All ER 849.
19
See Dworkin, Life’s Dominion, (Knopf, 1993) 224: [T]he value ofautonomy…derives from the capacity it protects: the capacity to
express one’s own character-values, commitments, convictions, andcritical as well as experimental interests-in the life one leads.
14

15

6
Human Fertilization and Embryology Act 1990, Halsbury’s Statutesth(4 Edn) (2001) 291, 332.
7
[2003] 3 All ER 260.
8
[2002] 2 All ER 105.
9
[2002] 2 All ER 108.
10
[2002] 2 All ER 110.
11
[2002] 2 All ER 111.
12
[2003] 3 All ER 270.

17

18

Eubios Journal of Asian and International Bioethics 15 (January 2005)

this is a case in which a conflict between these two moral
principles required a “painful compromise” to be made. In thiscase the ultimate compromise was based on the court trying todecide best as to what Anthony Bland himself would havechosen, based upon a respect “to allow him to die and bemourned by his family that to keep him grotesquely alive”.20 It
was according to this principle-based mode of reasoning thatthe Bland case was decided. Now as the boundaries ofbiotechnology expand into ever more controversial areas, thereis (like in Bland) a corresponding need for systematic ethicalthinking regarding the implications and normative issues thatthese technologies impose on society.
No slippery slopes or free-for-alls
Despite the reluctance to consider the moral implications,the Court of Appeal in Hashmi did suggest that this decision
was not to be seen as eliminating all legal restrictions on
genetic tinkering:
It is (however) plain that while Parliament outlawed certain
grotesque possibilities (such as placing a live animal embryo ina woman or a live human embryo in an animal) it otherwise
opted for a strict regime of control. No activity within this field
was to be left unregulated. There was to be no free for all(emphasis added). 21
But while the learned judge offered the briefest comment
on what he considered “grotesque practices” he did not go on
to set out what has been referred to in the literature of bioethics
as a “bright line” as to enable the evaluation of what practices
are acceptable (and what are not). And unlike Hoffman in
Bland, the Hashmi decision did not consider the underlying
moral principles. The decision, based as it apparently was on
assumptions of a favorable outcome does not offer any realguidance as to the underlying values which serve to establish
the ethical quality of those practices. In this respect one must
ask, how is this case to set out legal rules in future disputes
involving screening for other characteristics?
This problem has now become more than an academic
one and the threat of those “morally unacceptable” decisions
referred to in Bland is a real one. Already, tissue typing isbeing carried out in the United States with the intended
purpose of sex selection as opposed to screening for life
threatening diseases. 22 Beyond these practices, the field ofgenetic screening offers the promise in the not too distantfuture, of screening embryos not only for diseases (such as
BTM) but for other more fundamental applications as well. The
implications of genetic technology are profound. Could aconsumer-driven demand for desired traits in children begin toalter the idea of human reproduction? In other words, does theadvent of this procedure of tissue typing (or for that matter the
project of the new genetics as a whole) pose the ethical“slippery slope” that will potentially lead to the same “grotesquepractices” as described by Lord Phillips in Hashmi?
Indeed, one can reasonably foresee that in the not too
distant future, similar screening could theoretically be done
regarding height, intelligence, alcoholism and (with the isolationof a “gay gene”) being able to screen for the trait ofhomosexuality. In an effort by parents to have the best
possible child, the line between screening for disease and forthe “best traits” may well become increasingly blurred. As thephilosopher Peter Singer has famously argued in a lecture at
Stanford University, “…for most parents, giving their children
the best possible start in life is extremely important”. 23
20[1993] 1 All ER 853.
[2003] 3 All ER 266.
See the American Society for Reproductive Medicine’s Ethics
Committee Report on “Preconception gender selection for nonmedical
reasons”
at:
http://www.asrm.org/Media/Ethics/preconceptiongender.pdf .
23
P. Singer, http://www.petersingerlinks.com/supermarketprint.htm (2August 2004).
21

22

According to Singer’s reasoning, it is unlikely to suppose that acouple would feel that carrying a child with a disability (such as
Downs Syndrome) to term will equip him/her with the best
possible start. Singer’s conclusion here is that just as it isreasonable to abort fetuses with disabilities such as Downs, it
is also just as reasonable to select children for intelligence,height and even aesthetic appeal. Consider Singer’s position
regarding the prospect of an ethical “slippery slope”:…to say that the future just sketched is no nightmare, but abetter society than we now have, one full of healthier, more
intelligent, taller, better-looking – perhaps more ethical? –people. There is therefore no “slippery slope” because theslope is not down to an abyss, but upward to a higher level ofcivilization than we have achieved so far. 24
Yet on closer examination, such reasoning is flawed. As
F.M. Kamm has pointed out, Singer’s application the principle
of individual free choice tends to break down when “some are
given the right to determine the outcome for another person –namely a child”. 25 Furthermore, Singer’s claim that whatamounts to a form of voluntary eugenics could somehow
produce more ethical people is very much open to doubt. But
in a wider context Singer’s thesis on behalf of a geneticallyengineered social upland must be earnestly addressed withregard to the future. This is because of the fact that thefrightening legacy of the eugenics movement of the last century
cannot easily be ignored.
The history of the genetics
movement of the last century (brought to its extreme position in
the form of Nazi policies of “racial hygiene” that included in its
agenda forced sterilization, euthanasia, and ultimately murder)
cannot be easily ignored.
The legacy of the eugenics
movement ought to heighten existing serious concerns overany new introduction of normative notions of “desirability” into
the implications of the human genetics project.
Furthermore, as the frontiers of genetic knowledge arepushed back, might we not also become victims of applying
human prejudices along with this new genetic technology? A
similar application of imperfect knowledge to preconceived
bigotry was certainly the case for the (now discredited)eugenics movement of the nineteenth and twentieth centuries.
26
Allan Buchanan, Dan Brook Norman Daniels and Daniel
Wikler writing on the implications of the new genetics raise theprospect of, “whether, like the sorcerer’s apprentice, we will
suffer the consequences of partial knowledge, overestimating
our power to predict and control the causal chains we initiate
through the application of our newfound knowledge”.27 But at
the same time they also consider the need for an
accompanying set of values that can clarify what practices are
ethical and what are not. The question they raise in thiscontext is, “[e]ven if we were more assured than we should bethat out technical control will be complete, we would continue towonder whether we will be able to distinguish between what we
can do and what we ought to do (emphasis added).” 28
The history of the eugenics movement can be ultimately be
traced to Plato who argued that far from being created equal,
man is born to a particular position in life and the harmonious
society is one in which all individuals serve within their own
appointed station.29 A key question to ask here is how closely
24

Ibid.
F. Kamm, “Genes, Justice and Obligations to Future People”, Social
Philosophy and Policy, Vol. 19, No. 2, (2002) 365.
26
Buchanan et al, From Chance to Choice, Genetics & Justice(Cambridge UP 2000) 28-46.
27
Buchanan et al, From Chance to Choice, 4.
28
Ibid.
29
Plato, Republic, Trans. Robin Waterfield (Oxford UP 1993) (Chap.
xvi, v 458-59) 172. In the Republic, Plato makes reference to “breeding
stock” in animals. He then makes the comparison to breeding inhuman beings and reasons that to allow “unregulated unions” would
result in what he calls, “profanation”. Plato’s concept of profanation isat the heart of twentieth century eugenics (referred to as“degeneration”).
25Eubios Journal of Asian and International Bioethics 15 (January 2005)
does the new project of genetics resemble the old project ofeugenics with its own fundamental prejudices? While it ispossible to argue that the “old” eugenics was based onimperfect knowledge, the same genuine concerns can be held
about the genetics of the twenty-first century.
Foundations of principle
These questions go to the heart of any jurisdiction’s policy
review concerning biotechnology.
In the context of a
discussion concerning the issue of ethical foundations uponwhich any future biotechnology guidelines ought to be based, I
argue that in terms of consideration, foremost ought to be thatof justice and equal concern for the dignity of persons.
In terms of a philosophical approach to the question ofhuman value, the tradition of belief referred to as JudeoChristian teaching is based upon the fundamental idea that all
persons are equal before God in terms of intrinsic value or
moral worth. In Jewish and Christian thought, it is held that all
persons have been created in God’s own image and all will
ultimately be judged according to their deeds and not by birthor social status. This idea, of every person possessing animmortal soul, equal in worth before God had the effect ofundermining ancient notions of a hierarchy of human value. Its
central principle of the equality before God of all human beings,
serves as a bedrock principle for modern institutions ofjustice. 30 And even though this theist orthodoxy of moral
egalitarianism has been exposed to successive challenges byboth secular philosophies and the relentless advance of
scientific knowledge, it has nonetheless served as a core beliefof ethical thought.
Kant and the centrality of the individual
The Categorical Imperative (CI) is intended by Kant as asecular means of establishing moral truth and a basis for rightaction. In this regard Kant makes his own case for the moral
bright line that differentiates between what kinds of actions are
ethical and what are not.
It carries the significant ethicalassertion that if a person is treated merely as a means to an
end then such a person is diminished in her own humanity.
Only by treating persons as “ends” in themselves do we showproper respect for them.
In Metaphysics of Morals, Kant
makes the equally important distinction between a “Doctrine of
Right” and a “Doctrine of Virtue”.
Referring to the former,
Kant argues first and foremost for a right to individual freedom:“Freedom (independence from being constrained by another’s
choice), insofar as it can coexist with the freedom of every
other in accordance with a universal law, is the only originalright belonging to every man by virtue of his humanity.” 31
He speaks of an inherent sense of right and wrong whichsets human beings apart as morally significant agents. For
Kant then, the individual is seen as a moral being who as such
possesses a sense of dignity and as such is worthy of respect:
But a human being regarded as a person, that is, as the
subject of a morally practical reason, is exalted above any
price; for as a person (homo noumenon) he is not to be valued
merely as a means to the ends of others or even to his own
ends, but as an end in himself, that is, he possesses a dignity(an absolute inner worth) by which he exacts respect forhimself and from all rational beings in the world. He canmeasure himself with every other being of this kind and value
himself on a footing of equality with them. 32
According to this view, human beings are understood as
being moral agents that possess an inherent dignity. From this
it follows that they possess certain fundamental rights. The
significance of this idea is that it helps to establish human rights
as an entitlement, without resorting to any particular faith or
religious doctrine. Yet at the same time this entitlement does
30

Exodus 23.4-9; Matthew 25.31-45
I. Kant, The Metaphysics of Morals (Cambridge UP 1996) 30.
32
Kant, Metaphysics, 186-7.
31

19

not amount to licence. Ian Ward writing on the contemporary
Western obsession with rights is correct to point out the error ofstressing the Doctrine of Right at the expense of the Doctrine of
Virtue. 33 In this regard, Kant expresses this idea in terms of aduty to respect others:
All duties involve a concept of constraint through a law.
Ethical duties involve a constraint for which only internal
lawgiving is possible, whereas duties of right involve a
constraint for which external lawgiving is also possible. Both,therefore, involve constraint, whether it be self-constraint or
constraint by another. Since the moral capacity to constrain
oneself can be called virtue, action springing from such a
disposition (respect for the law) can be called virtuous (ethical)
action, even though the law lays down a duty of right; for it isthe doctrine of virtue that commands us to hold the right of
human beings sacred. 34
In further explaining the “Duty of Beneficence” - which Kant
regards as the maxim of making others’ happiness one’s end he argues that ultimately such a duty is in the common interestof all. 35 What follows from this assertion, is that institutions of
power are under a duty to treat people under their various
jurisdictions with “equal concern and respect”. 36 This same
duty, which is owed to people by their governments, is a central
part of an overall argument for human rights that has been
expressed not only by Kant, but also by successive advocatesof liberalism (including John Rawls and Ronald Dworkin). Oneof the inherent strengths of Kant’s moral philosophy is that it isable to accommodate diverse views about what a just society
ought to be.
Principle and disagreement
I have made this point previously with regard to Kant’s
relevance to human rights in the context of a Rortyan world ofphilosophical pragmatism where the absence of universal
moral truth threatens to undermine the core values of humanity
upon which any meaningful view of human rights is based.37 In
response, Jean Bethke Elstain has written eloquently about thissame issue.
She argues that while Rorty’s point that“everybody tries to whip up a story according to which he or
she did the right thing” and nobody “knowingly does evil” maybe allowed, there is an obligation on the part of us all to
distinguish between such stories. 38
And yet it is because people often disagree about justicethat societies need what Dworkin has referred to as “principles
Despite the need for accommodation ofof fairness”. 39
dissenting visions of justice, if a state adopts a particular policy
which constitutes a rejection of a fundamental respect of its
people, it violates their human rights. In this regard, Dworkinattempts to build his case by first employing the views ofBentham as indicated by the inclusion of the vocabulary ofsentience: “with concern, that is, as human beings who arecapable of suffering and frustration (emphasis added)”.
Dworkin combines these views together with those of a Kantian
ethic: “with respect, that is, as human beings who are capable

33

I.Ward, “Imagining Human Rights,” Studies in Law, Politics andSociety 24 (2002): 87-9.
34
Kant, Metaphysics, 156-7.
35
Kant, Metaphysics, 201-2.
36
R. Dworkin, Sovereign Virtue, (Harvard UP 2000) 4-7.
37
J. Rice, “The End of Human Rights?” International Journal of Applied
Philosophy 17: 1 (2003) 147.
38
R. Rorty, “Robustness: A Reply to Jean Bethke Elshtain, “ in Daniel
W. Conway and John E. Seery, eds., The Politics of Irony: Essays in
Self-Betrayal (New York: St. Martin’s Press, 1992), 219-20; Found in, J.
Bethke Elshtain, “What’s Morality Got to Do With It? Making the Right
Decisions”, Social Philosophy & Policy, Vol. 21, 1 (2004) 4.
39
R. Dworkin, Sovereign Virtue (Harvard UP 2000) 4-7. Dworkinargues that a government may not necessarily violate human rights if it
adopts a view held in good faith of what specific rights follow from thisbasic duty of equal concern.

20

Eubios Journal of Asian and International Bioethics 15 (January 2005)

of forming and acting on intelligent conceptions of how theirlives should be lived (emphasis added)”. 40
Tom Beauchamp and James Childress, propose in regard
to disagreement about morality four principles which they
categorize as (respect for) autonomy, nonmaleficence,
beneficence and justice. 41 They argue that in the lack ofagreement about any one moral theory, their four moral
principles form the basis for a common set of ethical principles.
And in this regard they draw on the contribution of Rawls andhis notion of “justice as fairness”. 42 In response to theprinciplism as proposed by Beauchamp and Childress, Donald
Ainslie has argued that this is not adequate since such criteria
would hardly be accepted by all. For example, it would not be
accepted by radical libertarians (or for that matter
Nietzcheans). He advances the argument that any ethicaltheory must not be dogmatic, but instead ought to be able toaccommodate an ethical pluralism. 43
But is a set of moral principles as proposed by Beauchamp
and Childress (or for that matter a more general theory ofjustice as advanced by Rawls) really “oppressive and arbitrary”
as Ainslie suggests, given that it cannot accommodate all
possible views? Elshtain, argues that the moral point isembedded in the description – “if we get the facts wrong, we
will be wrong about ethics too”. She cites Stephan Carter who
argues that “[w]e must never lose the capacity for judgment,
especially the capacity to judge ourselves and our people …[Todo] otherwise, at the end of the line lies a pile of garbage.” 44 It
is argued here that it is this judgmental attribute of morality thathas the capability to distinguish that which is garbage from thatwhich is not.
Rawls and the just society
In A Theory of Justice, Rawls sets out a discourse of not
only justice theory (and issues of disagreement inherent in apluralist society) but of the wider enterprise of moral andpolitical philosophy as well. In terms of the centrality that liberty
plays in his outlook, Rawls follows in the tradition ofphilosophers such as J. S. Mill, yet at the same time Rawls
avoids Mill’s utilitarian approach. 45 Instead for Rawls, heavy
reliance is placed upon the philosophical methodology andcontent of Kant. Indeed like Kant, this particular vision of moral
philosophy is based not only upon the a priori, but also on theempirical realm. And like Kant, Rawls is concerned about thenormative, as he is about the positivist claim.
For Rawls, a theory of justice is to be found with justprinciples. In order to discover what principles are just, onemust ask what principles we ourselves would choose for a justsociety. In his own words, Rawls argues that according to“justice as fairness, men agree to share one another’s fate”. 46
Rawls’ “original position” (which assumes no prior knowledge
about race, religion, ethnicity, social standing or naturalabilities) is based upon an assumption that one’s position in live
is in large part a result of what he terms a “natural lottery”.47
Just as one’s race, ethnicity, social class or economic standing
are factors that have been inherited through no fault or merit on
one’s own, so also is one’s genetic make-up a product of thenatural lottery.
Rawls is keen to assert that there is no moral significancethat may be properly attached to one’s station of birth or
inheritance.
What is important for Rawls is that given thediversity and disparity that exists in any given society, that

there also be a set of fair procedures that can be applied to all.
For Rawls, the first basic principle of justice is that “[e]ach
person has a right to the most extensive total system of equalbasic liberties compatible with a similar system for all.” 48 What
this entails is a system of strict equality with regard to basic
liberties compatible with similar liberties for all:
The basic liberties of citizens are, roughly speaking,political liberty (the right to vote and be eligible for public office)together with freedom of speech and assembly; liberty of
conscience and freedom of thought; freedom of the person
along with the right to hold (personal) property; and freedom
from arbitrary arrest and seizure defined by the concept of therule of law. 49
The second basic principle of justice that Rawls proposesgoes beyond mere negative equality of opportunity. He
proposes that “in any social order economic inequalities are to
be reasonably to everyone's advantage, and are to beconnected to positions, which are open to all.” 50 In other words,
Rawls advocates a system sensitive to the Principle of Fair
Equality of Opportunity. But then he goes further with theinclusion of the “difference principle” whereby society is to bearranged so as to allow the least fortunate in terms of naturaldifferences to do as well as possible.51 Accordingly, the overall
effect of the difference principle would be that the least well off
in society would be the best protected. Although Rawls admits
that any inequalities of wealth and status would not be totallyabolished by policies of favoring the least advantaged,
injustices would nevertheless be addressed through thedifference principle. In this regard he demonstrates what has
been termed as a deontological approach – that is, any given
system of justice is to be evaluated in terms of the fairness ofthe procedures that it entails. 52
Among the most far-reaching of Rawls’ claims however, isthat minimalist equality of opportunity leaves unresolved thepredisposed state of inequality in terms of innate talent (thenatural lottery). It is this assertion of the arbitrariness of anatural lottery that forms the basis for Rawls’ difference
principle, can also be said to extend to genetic endowment.
As Thomas Nagel has put it, “[w]hat can be said of being bornwith a silver spoon in your mouth also goes for being born withgolden genes”. 53 Nagel’s argument in this regard is that a
deontological approach to justice places great importance (asdoes a Kantian ethic) upon individual responsibility. In thisregard Nagel argues, “free-choice has the effect oflegitimating”, while “coercion or discrimination delegitimates”.
However “that which is left to chance or luck is neutral”. 54
From genetic lottery to genetic equality
In their treatment of justice and genetics, Buchanan (et al)
have argued that while basic social institutions already reflect a
commitment to intervention in the natural lottery in respect tocongenital disease, “presumably any philosophical account ofjustice must acknowledge the necessity of such interventions”.
55
But the writers go further and speculate that in theory,
genetic intervention may also be applied even more
fundamentally. They consider the situation “where only those
whose genetic assets fall within certain parameters tend todevelop certain cognitive abilities beyond a certain level”: 56

48

Rawls, 60.
Rawls, 61.
50
Ibid.
51
Rawls, 76-80.
52
Rawls, 30. “(Justice as fairness) is a deontological theory, one thateither does not specify the good independently from the right, or does
not interpret the right as maximizing the good.”
53
T. Nagel, “Justice and Nature”, Oxford Journal of Legal Studies, Vol.
17, No. 2, 309.
54
Nagel, “Justice and Nature”, 313.
55
Buchanan et al, From Chance to Choice, 71.
56
Ibid.
49

40

Rice, “The End of Human Rights?” 141-42.
T Beauchamp and J. Childress, Principles of Biomedical Ethics, ed.
4 (Oxford UP 1994) 38, 100-01.
42
Beauchamp and Childress, 59-61.
43
D. Ainslie, “Bioethics and the Problem of Pluralism” Social
Philosophy and Policy Vol. 19:2 (2002) 3-4.
44
Elshtain, “What’s Morality Got to Do With It?” 5.
45
Rawls, A Theory of Justice (Oxford UP 1971) 184-5.
46
Rawls, 102.
47
Rawls, 15-19.
41

Eubios Journal of Asian and International Bioethics 15 (January 2005)
Suppose also that, in general, only those who developthese abilities beyond this level are able to learn themathematics needed to succeed in all but the very least
desirable jobs, in a technologically advanced society. Under
such conditions, those whose genetic constitutions prevent
them from reaching the needed threshold of abilities will
experience significant limitations on their opportunities unlesssomething is done to overcome this impairment. 57
Philip Kitcher, shares this idea of genetic redistribution ofassets. He believes that a voluntary form of eugenics in theform of selection for desired traits in children is inevitable. In
his book The Lives to Come, argues on behalf of what he terms
a future “eugenic utopia” in which the use of genetic information
would be obtained in prenatal testing and would be madeavailable to all.58 His utopian genetically engineered world ishowever premised upon societies whose decision-makers
possess wisdom, beneficence and a “respect for difference”
that would seem to reflect not social reality but instead
proposes an all too familiar utopian dream.59
Could a view of justice based upon a redistribution, not inthis instance of resources but of genetic endowment ever gain
currency? And if it is possible, then should it ever be done? I
would argue that such any attempt at genetic redistribution as ameans of distributive justice would be wrong because it wouldat the same time seek to undermine perhaps the mostimportant moral premise, i.e., that of moral equality. 60 The
premise advanced by Kant and its “self-evident truth” soelegantly expressed by Jefferson, “that all men are createdequal” is undermined by the scientific claim to the contrary.
These types of genetic intervention would be wrong because
they would seek to replace a premise of moral equality with abiological one, and in so doing, rob individuals of what it means
to be uniquely human. Indeed in this context, genetic equality
begins to resemble a form of genetic uniformity. A conceptual
shift from moral equality to genetic equality (andcorrespondingly, inequality) in persons is to assert the latterand deny the former.
Yet the problem remains, which is who is to determine(and indeed by which criteria) what any such equality would
be? Who is to say that a genetically “perfect” individual who
has been engineered for health, height, intellect and beauty
would be “better” than a Ray Charles (blind from birth, yet agreat jazz pianist) or for that matter, a Stephen Hawking(severely affected in his twenties by ALS)? That a person who
has been screened for gender preference would be better thanan Allen Turing or a Walt Whitman? Or, on what basis is one
to claim that a genetically engineered tall, attractive blonde who
has a cognitive ability to obtain better than average SAT
scores, would be preferable to a Robert Johnson (perhaps
socially dysfunctional, but probably one of the greatest blues
men who ever lived)? 61

21

According to Dworkin’s legal and moral theory, principle isrequired by judges in deciding hard cases without having to fallback on the brutal logic of utilitarianism:
Arguments of policy justify a political decision by showingthat the decision advances of protects a collective goal of thecommunity as a whole…Arguments of principle justify a politicaldecision by showing that the decision respects or securessome individual or group right. 62
It is important to recall here that the language of Lord
Hoffman in Bland carries with it this foundational use of moral
principle in order to progress toward establishing legal rules. In
this way the application of principle provides the theoreticalbasis through which rights are respected even in the face ofcollective goals. 63 So too, this same concept of principle isnecessary in the realm of evaluating the challenges thatscientific advances pose to those human values that have long
been the basis for those of our instincts that are among ourmost humane. The criterion of principle in judicial decision
making (sure to come in the wake of Hashmi) serves to employ
a deontological approach to justice over a consequentialist one.
Although a fundamental logotaxis (or inclination towardknowledge) is said to be found at the center of the humancondition, along with this need to know, there must also be anevaluation of such knowledge is to be used and applied. As
Appleyard warns, science should only ever be a part of thewhole, “if it becomes the whole picture, catastrophe ensues”. 64…For what must be able to judge and evaluate science; itmust be a part of a culture. If we can’t, there is nothing todiscuss. Whatever science and the scientists say must be
right. Step over this cliff, they might say, the fall will do you
good, and we can only believe they must be right. 65
Without doubt, there will in future be more cases such as
Blaannnddd. The challenge that exists not only for
Hashmi and B
Blladecision-makers but for all individuals is to constantly apply
critical and ethical evaluation to scientific advance. Just as ablind acceptance of ideology has led in the past to totalitarian
excess, an uncritical application of science in the absence ofmoral constraint carries the real potential for catastrophic
results. In the final chapter of Life’s Dominion, Dworkin
responds to the “threat or promise” of future scientificdevelopments and the difficult issues that will confront society
with and concludes:[I]f people retain the self-consciousness and self-respectthat is the greatest achievement of our species, they will let
neither science nor nature simply take its course, but will
struggle to express, in the laws they make as citizens and the
choices they make as people, the best understanding they canreach of why human life is sacred, and of the proper place of
freedom and its dominion.66

A requirement for principle in judicial decision-making
62

R. Dworkin, Taking Rights Seriously (Harvard UP 1977) 83.
Brown v Board of Education, Topeka, Shawnee County, Kan., 347
U.S. 115, (U.S. Supreme Court held that public education along raciallysegregationist lines was unconstitutional).
Consider Dworkin’s
assessment here of consequentialism (and its main paradigm,
utilitarianism) in relation to this decision: “A pragmatist justice of ageneral utilitarian cast of mind would have asked himself whether adecision for the plaintiff children, based on the illegality of all official
segregation in schools, was really best for the future, all things
considered. He might have decided that it was, but he would have had
to consider strong practical arguments to the contrary. It was perfectly
sensible to think that such a dramatic change in the social structure of alarge part of the country, ordered by a court that is not responsible toany electorate, would produce a backlash that would damage rather
than advance education…” (Dworkin, Law’s Empire (Harvard UP 1986)
220-21).
64
Appleyard, Brave New Worlds, 160.
65
Ibid.
66
Dworkin, Life’s Dominion, 241.
63

57

Ibid.
P. Kitcher, The Lives to Come: The Genetic Revolution and Human
Possibilities (Simon and Schuster 1996) 202.
59
Ibid.
60
My use of the word “wrong” here, refers to that which is subjectively
wrong or blameworthy in the same that Parfit applies the term; Parfit,
Reasons and Persons, 25: “We need an account of subjective
rightness for two reasons. We often do not know what the effects of ouracts would be. And we ought to be blamed for doing what is
subjectively wrong.”
61
If those advocating this genetic supermarket conception of eugenics
were to argue that the issue is not whether a genetically engineeredchild is “better” than Ray Charles, but whether Ray Charles would havebeen better off as a sighted person. While his life probably would havebeen an easier one, who is to say whether he would have been thesame artist?
58

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Eubios Journal of Asian and International Bioethics 15 (January 2005)

Do we need a Thanatoethics?
- Assist. Prof. Oana Iftime
University of Bucharest, Faculty of Biology
Aleea Portocalelor 1-3 sector 5 RO- 77206 Bucuresti Romania
Email: ioannees@yahoo.com
People from all over the world belonging to various ethno
cultural groups share the same respect for the dead. Reasons
vary from one culture to another. I shall comment on short only
a few traditions’ attitude towards dead bodies.
Jewish tradition claims respect for the dead body because
once it harbored life which originates from God and, of course,much more important because man was created in God’s
image.
It is a sacred duty to bury deceased people and no one
should be left without a grave. Members of the community alsobury unclaimed bodies. In order to understand how importantsuch things are we have to mention the fact that even though
Jewish priests are not allowed to make contact with cadavers it
still is of their duty to put in the ground any unknown deceased
if there is no one else to do that.
Bodies are washed, dressed in a simple shroud meant toshow that in front of death we are all equal and buried as soon
as possible. They have to return fast to ashes we all werecreated from. Autopsy, dissection, incineration or embalming isin principle forbidden.
Christians share the same belief about man as a bearer ofGod’s image and about life as a divine gift. God’s most beloved
creature, candidate to redemption, called to enjoy together withhis Maker the beauties of the world man is dual by nature, bothmaterial and immaterial. Body and soul form an undividable
harmony since the very beginning of each person’s life. We
come to life by God’s will. He is the one that embeds life andthe soul within an earthly shell and He is the one that decides
when they will separate, for the shell to return to ashes and thesoul to get onto the other world to face God’s judgment.
After death, body has to be treated with respect, as it once
was a temple of the Holy Spirit, as God has created it out of His
immense love and it served the soul for an entire life. Bodies
have to be washed, which reminds of baptism. Incineration is
not allowed, as garbage gets incinerated, not human bodies.
The main idea of funeral rites in Orthodox Christianity is thatthe dead body remains under God’s protection as it used to bewhen alive. It is buried with love and care under the sign ofhope for resurrection in Christ.
Islam also teaches respect for the death. It is of very badtaste, not appropriate to carry a body using a vehicle or an
animal, as if it was a piece of luggage. The body has to be
carried by four persons or if it is light enough (a child’s body, forexample) by one person only that has to hold it with both his
hands.
It is everyone’s duty to bury the deceased. If ananonymous is found death in Muslim lands the body is buried
and a funeral prayer has to be pronounced. Dead bodies haveto be carefully washed, perfumed with camphor and dressedwith specific ritual clothing.
In Islam there are even special percepts that explicitly
forbid enemies’ bodies to be desecrated for example bymutilation. Transplant from a dead body is not allowed for thesame reason that it equals desecration of the body.
Hinduism also treats the body with respect even thoughthat is not as apparent as for the other mentioned religions
because of the incineration rites. Nevertheless, incineration
does not reflect a lack of respect for the “human shell”. It is
required in order to free the soul more quickly so that it could
go on with its karmic cycle.
The body is however important and embalming or autopsy
have to be avoided as cutting the body open might trouble thesoul that is still around in the first few days after death. Hindu

people respect dead bodies, they would not leave them to beeaten by animals or desecrated by disrespectful people by anymeans.
One attitude I particularly find deeply moral and wise wasthat of the Mongols that put no sign on someone’s grave sothat the body could by no means be found and desecrated. The
deceased could therefore rest in peace. Mongols have always
been showing respect to the dead of every nation and religion,
not allowing anyone break not even into ancient anonymous
graves that had practically nothing to do with their own history
and that very well might have contained valuable pieces. Theirdisgust towards Archaeology disturbing the rest of the dead isvisible up to the present.
So, in theory we can expect that all over the world mostpart of the people would feel quite similar about our “shell”
being unproperly treated. And here a big question pops up what does “unproperly” mean?
Times have changed, people have changed, the world is
continuously changing but... old habits dye hard and somethings never change. Among those, the irrepressible interest forothers’ dead bodies that we seem to share since immemorial
times.
As I underlined above religion teaches us to regard bothliving and dead bodies with respect. Taking care of ourdeparted neighbors is a moral duty to us whether we are
Christians, Hindu, Jews or Muslims. Still, a dark fascination lies
somewhere in our head or soul, beneath the beautiful layers of
our moral self. When it comes about dead bodies it seems that
contemporary people are at least as tempted as their Middle
Age ancestors to set foot over that thin red line between
decency and - let’s say so - extravagancy. Gruesome news
with gruesome pictures makes magnificent audience, as any
good news anchor knows. Many people look for the thrill ofwatching more or less bloodied human remains. Some of thosedeath consumers claim to be horrified by such scenes but they
still look, eyes wide open and their heart pumping like crazy.
In the few last years new and imaginative manners ofmaking out of death a source of entertainment emerged.
There are thousands of websites offering horrible pictures
to anyone that might be interested. Net nannies watch carefully
for children not to set eyes on sex pictures (not that I do notagree with this policy). Meanwhile, children may freely watch
horrors and get some awesome material for future nightmares.
While looking for material for this paper I visited only oneof the “gruesome” websites. It proudly advertised being “thesickest place on the web for 6 years!” In my humble opinion, it
deserved some credit, indeed. I had to leave my desk for awhile in order to get into my senses. And not that I have a weakstomach, I studied biology and dealt with each and every
possible piece of human and animal dead bodies. I always felt
sad watching the human remains we used as practice material
back in faculty but never got sick. No one was really mocking
those remains. There were a few jokes but no one exceeded
measure.
Getting sick in this particular case is not about pictures ofdead bodies more or less scattered to pieces, it is about theevil that seems to lie beneath exposing a person’s remains
under some circumstances. It is not about images but aboutcomments and scenery. Some might call devilish whatever
drives people to create such websites. Most will probably call it
sick. I call it sad. It is really sad to see people become
intellectualist hyenas. A taste for grotesque is often considered
to reveal a person’s refinement, it very well suits people ofculture. Count Dracula continues to be a romantic fascinating
figure.
A trendy matter in the field is plastination. Plastination is an
original preservation method intended to serve teaching andresearch by keeping parts of dead bodies into an outstandingly
good condition. Replacing water and body fat with a resin cando this.

Eubios Journal of Asian and International Bioethics 15 (January 2005)
The technique has been invented about 20 years ago by
Dr. Gunther von Hagens at Heidelberg. Its results areoutstanding; the anatomical specimens look very realistic (theyARE real, as a matter of fact), not suffering a bit from the signsof decay.
I have to admit that von Hagens’ invention was an
outbreak in the field of preparing study material for Biology andMedicine actual or future specialists. Yet, many people do notseem so eager to develop a taste for it at least not in its “public
event” dimension.
When plastination got public in the USA someone called
the supposed travelling exhibit of dead bodies "a public roadshow of Uncle Joe and Aunt Matilda." Harsh but sadly true.
Nevertheless, scientists became to have doubts about theevent they were planning only when reminded that the six
bodies that were intended to be exposed belonged tounconsenting anonymous that no one had claimed from the
morgue.
It seems that we are rapidly moving from traditional values
to the culture of the (informed) consent, misperceived as achaotic space where anyone can break rules and trash“taboos” as long as certainty about his/her free, informed
choice is assured.
If plastination specialists would have been limited toscience I guess there wouldn’t have been any great fuss about
it. But at some point they tried to make a new art out of it. A
macabre art that has not exactly met the taste of a few
churches, citizens’ organisations, scholars, public figures andordinary people that felt outraged of what plastinators called
art.
When von Hagens started to expose artistry made out ofdead bodies he aroused many voices. If displaying anatomic
specimens with educational purposes was (almost) acceptable,
the sight of a dead man travelling through eternity on (dead)horseback or that of a dead woman unveiling for the public themystery of the dead child in her plastinated womb definitely
upset many people. I have to admit that I sympathise withthem. The whole thing has a strange, infernal glitter.
It is interesting to watch how plastination gets sometimes
semi-rejected and semi-defended altogether, by the same
person in accordance with personal views beyond the subject.
A comment published on a socialist website contested
plastination’s artistic dimension while defending it against the“rigid” attitude of some Christian denominations. It is one
individual approach that I found quite intriguing by its core ofatheist-intellectualist objectivity and sense of equity.
Meanwhile the large public that hates plastination ruleswith a few good percents- an on-line poll reveals that about
56% of the voters find plastination “disgusting and wrong” intotal opposition to those that think about it as “a goodeducational tool” (43%).
As if intended to prove the fact that nothing is good orwrong by itself but by the way you use or apply it, a very
imaginative application of dr von Hagens’ technique flourishedrecently. There is a company that offers to plastinate male
intimate parts so that devoted wives or girlfriends can keepthem when the rightful owner dies. They call it an “intimate
memento”, that is “sterile, non-toxic, very durable, and safe tohandle and display as you see fit.“ No further comments.
So, aren’t traditional moral values enough any more, with
Bioethics added to the defendant mechanisms intended toprotect human dignity in these troubled days we live?
Do we need something especially designed, a“Thanatoethics” in order to refrain from treating human deadbodies as if they were shells or starfish that we may joyfully use
as decorations?
I will not however conclude symmetrically, with my own
question that also stands for title but with a comment someone
else has made on-line, in the middle of his story about how
fascinating and educative a plastinated bodies exhibit was to
him:

23

I can’t help but wonder what HR Giger (the surrealist artist
that created Alien “life forms”) might do if he knew how to do
plastination.
Neither can I...

24

Eubios Journal of Asian and International Bioethics 15 (January 2005)

References
1)

Athar, S. Islamic perspectives in Medical Ethics in Islamic
Medicine, Athar S. (ed.), available at http://www.islamusa.com/im18.html
2)
Berman R. U. (copyright 2004) The Final Act of Loving
Kindness, excerpt from Dignity beyond death: the jewish preparation
for burial, to be published by Urim Publication, 2005, available at
http://www.pbs.org/wnet/religionandethics/week750/excerpt.html
3)
Blessed Augustine of Hippo, excerpt from A Treatise on Caring
for the Dead, available at http://www.orthodox.net/articles/caring-fordead-blessed-augustine-hippo.html
4)
Bria I., Dictionar de teologie ortodoxa (A Dictionary of Orthodox
Christian Theology) (1994), Editura Institutului biblic si de misiune al
Bisericii Ortodoxe Romane, Bucuresti
5)
Diamant, A. (1998) Burying the dead in simple white shoruds,
excerpt from Saying Kaddish: How to Comfort the Dying, Bury the
Dead and Mourn as a Jew, Shocken Books, NY, Available in Jewish
Heritage
On-lineMagazine,
http://www.jhom.com/topics/color/shrouds.htm
6)
Donnelly F.X. (2001) Ethicists decry U-M cadaver tour, in
Detroit
News,
March
5,
availableat
http://www.detnews.com/2001/schools/0103/05/a01-195677.htm
7)* * * (1997) Death and Dying, Hinduism Today, January 1997,
available at http://www.hinduism-today.com/archives/1997/1/1997-103.shtml
8)
Henning D. (2000) Science, art or carnival sideshow? The"Human Body Worlds" exhibit in Cologne, available at
http://www.wsws.org/articles/2000/mar2000/body-m23_prn.shtml
9)* * * Human Rights, the West and Islam available at
http://www.islamworld.net/hr.txt
10)* * * (2002) Insight. Medical Ethics, Hinduism Today, Jul, Aug,Sep 2002, available at www.hinduism-today.com/archives/2002/79/40-47_ayurveda.shtml
11)
Kermali M. (2002) Burial Rituals published on-line by Ahlul Bayt
Islamic Centre Ontario, Canada, available at http://www.alislam.org/burialrites/
12)
Sharma S.C. (2003) Cremation and its origin in Hinduism,
available at http://www.geocities.com/lamberdar/cremation.html
13)
Sokolov V. (1997) Death, Funeral, Requiem -- Orthodox
Christian Traditions, Customs and Practice available at
http://www.holy-trinity.org/liturgics/sokolov-death.html
14)* * * (2004) Belief & Practice- Jewish Burial Practices, Religion&
EthicsNewsweekly,
availableat
http://www.pbs.org/wnet/religionandethics/week723/belief.html
15)* * * Dictionar enciclopedic de iudaism (Romanian transl. of
Dictionnaire encyclopédique du judaïsme, 1996,
Editions
Cerf/Robert Laffont S.A., Paris) (2001), Hasefer, Bucuresti
16)* * * Gunther von Hagens’ Body Worlds. The Anatomical
exhibition
of
real
human
bodiesavailableat
http://www.bodyworlds.com/
17)* * * Hindu Rites & Rituals- Death & Funeral, Library ofCongress
Country
Studiesavailableat
http://hinduism.about.com/od/basics/a/rites_rituals_5.htm
18)* * * Invatatura de credinta crestina ortodoxa (Orthodox
Christian Teaching) (1999) Editura Institutului biblic si de misiune al
Bisericii Ortodoxe Romane, Bucuresti
19)* * * Islamic Funeral Rites- Care for the dying, funeral prayers,
burial,andmourning
availableat
http://islam.about.com/cs/elderly/a/funerals.htm
20)* * * Jewish Funerals, Burial and Mourning, available at
http://www.jewish-funerals.org
21)* * * Intimate Mementos. Plastination, available at
http://www.intimatemementos.com/
plastination.html
22)
*
*
*
Plastination
atViennaUniversity
http://www.univie.ac.at/anatomie2/plastination. Html
23)
* * * Preservation by plastination. Plastination - a teaching andresearch
tool,
availableat
http://www.kfunigraz.ac.at/anawww/plast/pre.html (page on thewebsite of the International Society for Plastination)24)* * * (2001) Sickness, Death, Funeral, Shroud & Related
Matters available at http://ccminc.faithweb.com /janazah/index.html

Eubios Journal of Asian and International Bioethics 15 (January 2005)

Are the dead really departed
when we remove their organs?
- Paolo Becchi
Associate Professor in Philosophy of Law, Faculty of Law,
University of Genoa, Italy,
Translated from Italian by Lenny Pittaluga.
1. Premise
As the discussion regarding the subject about the
beginning of life has recently jumped in our country, inconnection with the disputed passing of the artificial
reproduction law (law nº40, 2004); On a subject concerning theend of life, and that is particularly the matter of the removal oforgans from “corpses”, the debate seems to be finished
immediately after the passing of the new law ontransplantations (law nº 91, 1999). This law has been passedby the majority in Parliament. However the debate on this law
has been mainly held on an issue – on the other hand, a longterm one – and that is the norm introduced for the declarationof will, known as “informed silent-assent.” (see sec. nº 4).
In my opinion, a quite questionable norm, even though it
was much more questionable, how the then Health Secretary
Rosy Bindi got round the law, by sending the Italian citizens a
card (donor card). This card wasn’t not only provided for by thelaw in any way, but actually it obstructed its application at the
crucial point.
In fact today it’s five years since the law was in effect and
we are still in a transient phase (governed by sec. nº 23), that
we can just go on defining so in euphemisms. But now I don’t
want to dwell long on this point.67
Here I would like to raise another doubt and this doesn’t
concern so much with the law about transplantations itself aswith the assumption it is based on; and that is to say whether
the donor is already a “corpse”, when the organs are about tobe removed. Are we really sure of it? 68 I will begin from an
obvious remark that appears immediately clear by thecomparison between the two laws I have just mentioned.
We thought it proper to defend with a series of prohibitions
a pin-sized being contained in vitro (e.g. by prohibiting its
freezing or its killing or even by forbidding the preimplantantenatal diagnosis), on the contrary, with a human being in theflesh, whose temperature is about 37º C, with a rosy
complexion and a not voluntary heart beat and breathing but
kept alive by mechanical ventilators, we can do everything ispermitted to do with a corpse. You might observe: the matter isonly apparently perplexing. Since their earliest formation,
however, the embryos are already alive (and this explains why
they draw great attention), on the contrary, once brain death67
I have already dwelt on it on many other occasions, I confine myself
here to mention: P. Becchi, P. Donadoni, Informazione e consenso
all’espianto di organi da cadavere, in <<Politica del diritto>> XXXII, n.
2, 2001, pp. 257-287; P. Becchi, Tra(i)pianti, Spunti critici intorno alla
legge in materia di donazione degli organi e alla sua applicazione, in<<Ragion pratica>>,18, 2002, pp. 275-288. e P. Becchi, Information
und Einwilligung zur Organspende. Das neue italienische Gesetz undseine “ewige” Übergansphase in Hirntod und Organspende, edited by
A.Bondolfi, U.Kostka, K.Seelmann, Basel, Schwabe, 2003, pp.149-161.
68
For a more exhaustive attempt to answer the raised question, I want
to refer to an anthology that I edited in association with Rosangela
Barcaro, Questioni mortali. L’attuale dibattito sulla morte cerebrale e il
problema dei trapianti, Napoli, E.S.I, 2004,. This anthology includes
writings by Carlo Alberto Defanti, John Finnis, Amir Halevy e Baruch
Brody, Hans Jonas, Josef Seifert, Alan Shewmon, Peter Singer, Ralf
Stoecker, Robert Truog and it reproduces in the appendix thedocument of the Danish Council of Ethics dedicated to the discussion
on death criteria.

25

has been established, the patient isn’t any longer alive, but
dead: a corpse that looks like still alive, but it actually lives nomore. This conclusion is introduced as a scientific datum, which
was acquired once and for all at the end of the Sixties, when aCommittee, founded at Harvard medical school in order todiscuss the problem, managed to compare in a famous reportto all intents and purposes the irreversible coma diagnosis(made with accurate clinical tests, that had to determine thepermanent loss of brain functions) to brain death and this to theactual death.69
A new definition of death derived and in the succeeding
years it was very successful. And this happened for various
reasons. First of all, this definition reflected the then scientificknowledge, that seemed to prove the theory that the patients ina irreversible coma were destined to die of a cardiac arrest in ashort time, anyway; secondly such a definition gave the best
help to the development of the technics of transplanting, thathave just begun at that time (we have to remember that the firstheart transplant was done by Barnard in December 1967);
thirdly it could have the problem of euthanasia got around: if
the patient, whose brain had completely stopped working, wasdead, removing its heart or breaking off the artificial breathing
didn’t correspond to kill him. As you can see, right from thestart, not only scientific reasons urged to redefine death. Even
if you examine the laws, the connection between the new
definition of death and transplantations is very evident. We
restrict ourselves to our country, but the matter, at least to acertain extent, could be generalized to other juridical
experiences. Back in 1969 the criterion of brain death wasthintroduced with the Health Secretary’s decree law of the 11thAugust, and with the following one of the 9 January 1970. This
criterion was introduced (using the Harvard standards for allpractical purposes) exactly with a direct reference to the
problem of the removal of organs for transplantations. And it isthremarkable that, in a very short time, on the 5 February 1970,
one of the President of the Republic’s decree laws (the nº 78one), introduced by the Health Secretary, authorized for the4
first time in Italy the removal of heart and of its parts. Since
then the law-maker confined himself to indicate the various
methods for the confirmation of death and he didn’t even dare
define it in the first methodical law regarding transplantations(law nº 644, 1975). This happened in 1993 only with the law nº
578 (and with next year’s related execute ministerial decree 5).
According to this law death <<corresponds to the irreversible
cessation of every brain function>> (sec.1)

69
See A definition of irreversibile coma. Report of the Ad Hoc
Committee of the Harvard Medical School to Examine Brain Death, in<<Journal of the American Medical Association>>, 205, 1968, pp. 337340. For the critical discussion on the document see for instance: M.
Giacomini, A Change of Hearth and a Change of Mind? Technology
and the Redefinition of Death in 1968, in <<Social Science andMedicine>>, 44, 1997, pp.1465-1482; R.M. Veatch, Transplantation
Ethics, Washington D.C., Georgetown University Press, 2000; G.
Belkin; Brain Death and the Historical Understanding of Bioethics, in<<Journal of the History of Medicine>>, 58, 2003, pp. 325-361; in
Italian see C.A. Defanti, Vivo o morto? La storia della morte nella
medicina moderna, Milano, Zadig, 1999, pp.65-75. See P. Mollaret, M.
Goulon, Le coma dépassé. Mémoire préliminaire, in <<Revue
Neurologique>>, 101, 1959, pp.3-15. The importance of this study has
been ignored for a long time because Harvard Committee has put, as
to speak, the previous papers in the shade. Nowadays Mollaret and
Goulon’s work is recognized as one of the most significant moment in
the irreversible coma research. See for example E.F.M.Wijdicks, The
Landmark <<Le Coma Depassé>>, in E.F.M.Wijdicks (edited by), Brain
Death, Philadelphia, 2001, pp.1-4.
4
All the quoted regulatory documents are quoted in the appendix of theimportant essay by F. Mantovani, I trapianti e la sperimentazione
umana nel diritto italiano e straniero, Padova, Cedam, 1974, pp. 851853.
5
See, on this subject, also for the regulatory documents attached in the
appendix: U.G. Nannini, Valori della persona e definizione legale dimorte, Padova, Cedam, 1996.

26

Eubios Journal of Asian and International Bioethics 15 (January 2005)

This law introduces not only the definition of total brain
death, but also – changing route with respect to one of 1975 –
extends the use of the norms for the determination of deathfrom the persons suffering from brain injuries and who aresubjected to resuscitative measures to all those who are in thatcondition, regardless of they are donor or not. Even though thislaw is formally separated from the transplantation problem,since this law was brought in, it has changed the conditions forthe removal of organs. And the latest transplant law, that has
been in effect since 1999, only accepts it completely from this6
viewpoint. The transplant law has indeed changed themethods to get the consent, it has made it easier (and this isalready partly true in the present transient phase), but this law
has kept the definition of death and the standard methods for
its determination unchanged, as so they had been establishedin 1993/94, and therefore they are now the assumption for theremoval of organs legitimacy .
2. The moral-philosophical debate on brain death.
Even just during the Nineties, while in our country – like inmany others – brain death was not only accepted, but its
definition was even introduced by a law; in the country where
this definition was firstly given, The United States of America, astrong reconsideration of it started developing. Actually strong
philosophical doubts about the new definition of death raised
immediately. As everybody knows a great twentieth-century
philosopher, as well as one of the most important figures in thecontemporary bioethical discussion, Hans Jonas, after a monthsince Harvard report publishing, during a conference about theexperiments on human beings raised his strong objection to it.
The leitmotiv was the following: we don’t know exactly theborderline between life and death and a definition – inter alia
introduced with the clear intention to encourage the removals oforgans – can’t replace that cognitive deficit for sure. Whenbrain has completely stopped working we can break off theartificial life-support treatments (on the contrary – as Jonasclaimed later on – we must do that because keeping a humanbeing in that condition would be opposite to the human being’s
dignity), not only because the patient is dead, but also because
making his/her life longer in that condition is absurd. In Jonas’
opinion we can already find the dilemma – well emphasized by
7
Jonsen – which derives from the debate on brain death. Should
we break off the life-support to let the patient die or should weturn off the respirator connected to a body, which is alreadydead? As everybody knows the second one has been chosen
and as a dead human being’s respirator was turned off, why
not, on the contrary, keep it turned on a little to encouragetransplantations?
According to Jonas, instead, the first option had to betaken and the criticism on the new definition of death became
his strong point. His most famous writing, printed in 1974, is
8
entitled Against the Stream, now it has become a classic. Less
6

For a comment on the new law here I restrict myself to referring to themiscellaneous book: La disciplina giuridica dei trapianti. Legge 1º aprile
1999 n. 91, edited by P. Stanzione, Milano, Giuffrè, 2000; in the
appendix the law text is also quoted. For a critical interpretation see P.
Becchi, La morte nell’età della tecnica. Lineamenti di tanatologia etica e
giuridica, Genova, Compagnia dei Librai, 2002 e ora P. Sommaggio, Il
dono preteso. Il problema del trapianto di organi: legislazione e
principi, Padova, Cedam, 2004.
7
See A.R. Jonsen, The Birth of Bioethics, New York, Oxford University
Press, 1998, p.240.
8
Jonas’ reaction to the Harvard Committee report has been quick : itgoes back indeed to September 1968 and it was put forward by theauthor during his speech in the lecture about the experiments onhuman beings. The most famous essay Against the Stream followed it,
this writing was printed in 1974 (but composed in 1970). Jonas
discusses in it the objections that had been raised by some Committee
doctors, meanwhile he came into contact with. Two postscripts of 1976
and of 1985 followed this essay, a symptom of the steady Jonas’
attention paid to this subject. All the writings have been collected by
Jonas in Technik, Medizin und Ethik. Zur Praxis des Prinzips

known – and that’s why I’d like here also to draw attention tothis – is the fact that Jonas, just before his death, came back tothis problem again in his correspondence to a German doctor
he was friend with. The matter is worth briefly mentioning.
In October 1992 after a car crash a young woman went
into a coma of which she would never come out and, after the
standard clinical tests, she was declared brain dead. With herparents’ permission her organs were going to be removed. The
arrangements for the removal of organs were stopped and thedoctors decided to go forward with the pregnancy, when the
doctors realized she was pregnant. The debate on brain deathbegan in Germany and then a lot of people wondered how a“corpse” could go forward with the pregnancy and even – as it
happened – how it could “decide” to terminate a pregnancy witha spontaneous abortion when the foetus was no longer alive.
I’d like to quote on this subject a passage from Jonas’
interjection, taken from his correspondence with one of thedoctors involved in the case:“Whether you like or not, you, my friend, or better you (thedoctors) were contrary to the contemporary declaration ofdeath of her object with your well-considered decision. You
have said: with the ventilation (and the other treatments) wewant to prevent Marion’s body from becoming a corpse, so thatit can go forward with the pregnancy. As you thought it wasable to go forward with it, or as you wanted to give it thischance, you relied on the life remaining that was in it - and thatwas Marion’s life remaining! But the body is just as much
Marion’s body, as the brain was Marion’s brain. This time thefailure of the experiment (it seems to have already beensuccessful in previous less extreme situations) can’t be taken
so much as a confirmation that it is admissible, just as aspontaneous abortion shows that a pregnancy in general isn’t
possible. You believed sincerely in the chance of its success,and that is to say you believed in the functional capability of thecerebrally dead body which to that end was necessary and was
kept alive by your talent- and that is to say you believed in her
LIFE that was temporarily prolonged for the child. You aren’t
allowed to dismiss this belief in other coma cases for otherpurposes. 9”
You might say: this incident interestingly concerns itself
with showing the author’s great coherence. This is undoubtedly
true for Jonas’ biography, but meantime his “old” position had
become current again and it started to be much more popularthan it was before. Not only Jonas’ writings, but also Josef
10
11
Seifert’s ones , and more recently Robert Spaeman’s ones ,Verantwortung (1985). Italian translation., Tecnica, medicina ed etica,
Prassi del principio responsabilità, Torino, Einaudi, 1997, pp. 166-184.
Now the article is also in the anthology edited by R. Barcaro andP.Becchi, Questioni mortali. L’attuale dibattito sulla morte cerebrale e il
problema dei trapianti (in the press). For a first attempt to introduce
Hans Jonas’ figure and works in our country see fascicle nº 15
monographic section of <<Ragion pratica>> of 2000, dedicated to him.
See also P.Becchi, Tecnica ed etica in Hans Jonas in <<Annali della
Facoltà di Giurisprudenza di Genova>>, XXV, 1993/94, pp. 280-314
and now P.Becchi, Hans Jonas e il ritorno alla metafisica, in<<MicroMega>>, 5, 2003, pp. 82-109.
9

See H. Jonas, Brief an Hans-Bernhard Wuermeling, in Wann ist der
Mensch tot? Organverpflanzung und Hirntodkriterium, edited by J. Hoffe J. in der Schmitten, Reinbek bei Hamburg, Rowohlt, 1994, pp. 21-27.
The letter text is now translated into Italian in the anthology: Questionimortali. L’attuale dibattito sulla morte cerebrale e il problema dei
trapianti, (already quoted)
10
See J. Seifert, Leib und Seele. Ein Beitrag zur philosophischen
Anthropologie, Salzburg, 1973; J. Seifert, Das Leib-Seele Problem unddie gegenwärtige philosophische Diskussion. Eine kritischsystematische Analyse, Darmstadt, 1979, (A second edition of thisbook was published in 1989); J. Seifert, What is Life ?On theOriginality, Irreducibility and Value of Life, edited by H.G. Callaway,
Amsterdam, 1997; J. Seifert, Is “brain death” actually death? A critiqueof redefining man’s death in terms of “brain death”, in R.J. White, H.
Angstwurm, I. Carrasco de Paula, (edited by), Working Group on the
Determination of Brain Death and its Relationship to Human Death, 10-Eubios Journal of Asian and International Bioethics 15 (January 2005)
too would be worth considering. Both Joseph Seifert andRobert Spaeman (two authors with a Catholic background) now
share similar intellectual ideas to Jonas. All these authors
subscribe to the idea that given the uncertainty or impossibility
to test that a person is definitively dead, you should treat
him/her as if he/she were still alive.
However the most remarkable point – and that’s why I
want to dwell on – is that, also in a line of thought which ispoles apart from what I referred to, it is now openly recognizedthat “brain death” was only a “bold trick” human beings was
declared dead with, but they weren’t at all.
This is the conclusion a philosopher, Peter Singer, wellknown also in our country for his strong utilitarian ideas, cameto.
Also on this occasion it’s worth retracing briefly the path hetook.12 At the beginning of the nineties Singer – at that time
professor in Melbourne – was called by an important hospital inthat town to join a Committee that had to deal with some moral
questions connected to the problem of consent; among these
also the ones connected to anencephaly. The babies sufferingfrom this severe deformation can’t become completely
conscious, as they lack their brain upper part (that is the
cerebral hemispheres, cerebral cortex included) and theircranial vault, whose function is to hold it, whereas their “lower”
part, which is composed of brainstem, is often undamaged,
even though sometimes not very developed. So the
anencephalic child can breathe spontaneously, as this activity
depends on the brainstem, but the baby’s disease has agloomy diagnosis: these children survive for changeable timefrom a few days to few weeks, before dying of a cardio13
circulatory arrest.
Singer, who in the previous years had been, in general,“total brain death” promoter, coped then with the following
problem: why not pass from that idea of death to the corticalone in order to declare dead the anencephalic subjects, too?
Some Committee members wanted to take that course, but
Singer, leaving the others a little dumbfounded, didn’t follow
them. The reasons for his disagreement are expressed clearly
in one of his books, Rethinking Life and Death, brought out in1994 and shortly afterwards translated into Italian. At least one
paragraph of this book is worth quoting completely:“The resolutions of the Committee I sat on got me toconsider brain death more strongly. The Harvard Committee on
brain death had to cope with two great problems. A lot of
patients in a very despairing condition lived thanks to

14/12/1989, the Vatican City, 1992, pp.95-143; J. Seifert, Is “brain
death” actually death ?, in <<Monist>>, 76, 1993, pp. 175-202, seenow, translated into Italian, J. Seifert, La morte cerebrale non è lamorte di fatto. Argomentazioni filosofiche, in R. Barcaro, P. Becchi(edited by), Questioni mortali. L’attuale dibattito sulla morte cerebrale eil problema dei trapianti, Naples, ( in the press).
11
I recommend Spaeman’s clear interjection during an international
bioethical conference, which took place in Rome in October 2002. Hisinterjection text is now brought out in Italian and it’s entitled La mortedella persona e la morte dell’essere umano, in <<Lepanto>>, n. 162,
XXI, December 2002, (Dossier: Ai confini della vita/ At the boundaries
of Life)12
For a more precise study I’m allowed to refer to P. Becchi, Un passoindietro e due avanti. Peter Singer e i trapianti, in <<Bioetica>>, X, 2,
2002, pp. 226-247.
13
For a detailed description see for instance The Medical Task Forceon Anencephaly, The infant with anencephaly, in <<New England
Journal of Medicine>>, 322, 10, 1990, pp. 669-674. It is howeverobserved that more recent surveys carried out by D.A. Shewmon are
inclined to show, in some cases, how the remarkable brain plasticity
enables the brainstem to perform some functions, which, otherwise,
would be cortical. The doctrine of the neuroanatomical basis ofconsciousness is questioned. See on this subject D.A. Shewmon,
Recovery from “Brain Death”: A Neurologist’s Apologia, in <<Linacre
Quarterly>>, February, 1997, pp.30-96. (The Italian reader on the
anencephalic problem can read M. Caporale, Al confine tra la vita e lamorte, Milan, Vita e Pensiero, 1997, pp.22-23).

27

ventilators and nobody dared turn off the devices that kept
them alive. Organs which could have been used to save human
lives were unusable because, to remove them, you had to wait
for the cessation of the likely donors’ circulation of the blood.
The Committee had supposed to solve both problems,
resorting to a bold expedient and that was to declare dead all
the individuals whose brain stopped, at least partly, working.
This redefinition of death had so clearly expectedconsequences that it met with very few objections and it wasalmost universally accepted. Nevertheless, it was invalid fromthe start. The practice to solve the problems turning toredefinitions rarely works, and this incident wasn’t an exception
14of the rule.
Of course the conclusion that Singer draws from thecerebral “crisis” is very different from the previously quoted
philosophers’ one. For these people, if “the brain dead patients”
are still alive during the explantation, this means that we just killthem doing it and we must not do any explantation, according
to Singer, on the contrary, it is allowed to do it because life isn’t
a sacred and inviolable value. Also in this case (like in otherones) there is a third possibility, as usual this is the most15
difficult one, I tried to describe it on another occasion ; here
I’m interested in underlining another point: that is to say that,
despite the different moral conclusions, all the quoted authors
have started from the same objection to brain death idea. You
could wonder what has got Singer to share Jonas’, Seifert’sand Spaemann’s opinions on this subject. These authors werevery distant from him and he didn’t almost seem to have known
them at all. We can find an indirect answer by reading his latest
contribution to the subject, Morte cerebrale ed etica della
16
sacralità della vita, where the author reveals his sources. And
it deals with scientific sources of great importance, thattogether with others, contributed to define that state, the newidea of death based on completely neurological criteria, notonly from the philosophical viewpoint but also from the medicalscientific one, has sunk in.

14

See P. Singer, Rethinking Life and Death, The Collapse of Our
Traditional Ethics (1994), Italian translation, Ripensare la vita. La
vecchia morale non serve più, Milano, 1996 (reprinted, with anothersubhead: Ripensare la vita. Tecnologia e bioetica: una nuova morale
per il mondo moderno, Milano, 2000, p. 65)
15
See P. Becchi, La morte. La questione irrisolta, in <<Ragion
pratica>>, 19, 2002, pp. 179-218.
16
See P. Singer, Morte cerebrale ed etica della sacralità della vita, in<<Bioetica>>. VIII, 1, 200, pp.31-49. Singer’s essay has been thetheme of an interesting John Finnis’ reply, which has till now been
unpublished. Singer’s contribution, with this reply, are now included in
the book edited by R. Barcaro, P. Becchi, Questioni mortali. L’attuale
dibattito sulla morte cerebrale e il problema dei trapianti, (alreadyquoted).

28

Eubios Journal of Asian and International Bioethics 15 (January 2005)

3. The medical-scientific discussion about brain death
Although I hadn’t a doctor’s expertise, at least let me
17stress two crucial points on this subject. The first one
concerns with the possibility to check total brain death on thebasis of the norms and the tests which are now in use; thesecond one should prove the theory that brain death is a tale–tell symptom of the near brain death of the whole human body.
The first point was well-considered by two U.S. medical
doctors, Robert Truog and James Flacker, in an essay brought
out in 1992 and which is entitled: Rethinking brain death.18
According to these authors, proved scientific researches showthat the patients, who respond to the current clinical criteria andneurological tests for the brain death, don’t necessarily lose allbrain functions and this would prove that the complete
cessation of these wouldn’t be diagnosable on the basis of thestandard tests in use.

17

For a more detailed discussion see R. Bancaro, P. Becchi, Mortecelebrale e trapianto di organi, in Bioetica chirurgica e medica, editedby L. Battaglia e G. Macellari, Noceto, (PR), Essebiemme, pp. 87-103
and Id., La “morte cerebrale” è entrata in crisi irreversibile ?. in<<Politica del diritto>>, XXXIV, 4, 2003, pp. 653-679. On the German
debate see for example: H. Thomas, Sind Hirntote Lebende ohne
Hirnfunktionen oder Tote mit erhaltenen Körperfunktionen ?, in <<Ethik
in der Medizin>>, 6, 1994, pp.189-207, J. Hoff, J. in der Schmitten (edited by), Wann ist der Mensch tot? Organverpflanzung und
Hirntodkriterium, Reinbeck bei Hamburg, 1994; M. Klein, Hirntod:
Vollständiger und irreversibler Verlust aller Hirnfunktionen?, in <<Ethik
in der Medizin>>, 7, 1995, pp.6-15, C. Wiesemann, Hirntod undGesellschaft. Argumente für einen pragmatischen Skeptizismus, in<<Ethik in der Medizin>>, 7, 1995, pp. 16-28; K. Stapenhorst, Über die
biologisch-naturwissenschaftlich unzulässige Gleichsetzung vonHirntod und Individualtod und ihre Folgen für die Medizin, in <<Ethik inder Medizin>>, 8, 1996, pp.79-89, W. Höfling, S. Rixen,
Verfassungsfragen der Transplantationsmedizin. Hirntodkriterium undTransplantationsgesetzt in Deutschland, Tübingen, 1996; G. Höglinger,
S. Kleiner (edited by), Hirntod und Organtransplantation, Berlin, 1998,
F. Oduncu, Hirntod und Organtransplantation. Medizinische juristische
und ethische Fragen, Göttingen, 1998; R. Stoecker, Der Hirntod. Ein
medizinethisches
ProblemundseinemoralphilosophischeTransformation, Freiburg, 1999; T. Schlich, Ethik und Geschichte: Die
Hirntoddebatte als Streit um die Vergangenheit, in <<Ethik in derMedizin>>, 11, 1999, pp.79-88; G. Brudermüller, K. Seelmann (editedby), Hirntod. Zur Kulturgeschichte der Todesfeststellung, Frankfurt a.
M., 2001.
On the Japanese debate see: H. Kawaguchi, Strafrechtliche Probleme
der Organtransplantation in Japan, Freiburg i. B., 2000; M. Morioka,
Reconsidering Brain Death: A Lesson from Japan’s Fifteen Years ofExperience, in <<Hastings Center Report>>, 31, 4, 2001, pp.41-46.
The debate diffusion, also in the general opinion, is clear by the dailypress analysis. See for instance: Transplants from brain-dead patientsburdensome: study, in <<Japan Economic Newswire>> ( International
News), Tokio, 8 maggio 2002; Transplants of organs from brain-deadman begin, in <<Japan Economic Newswire>>( International News),
Osaka, 12 novembre 2002; Organs from Wakayama brain-dead mantransplanted, in <<Japan Economic Newswire>>( International News),
Osaka, 13 Novembre 2002; Flawed test for brain death <<violatedlaw>>, in <<The Yomiuri Shimbun/Daily Yomiuri>>, 25 Febbraio 2003.
18
See R.D. Truog, J.C. Fackler, Rethinking brain death, in <<Critical
Care Medicine>>, 20, n. 12, 1992, pp.1705-1713. Starting from theresults he achieved with this article, Truog has dealt with brain death
problem more than one time. In an article of 1997 (R.D. Trough, Is It
Time to Abandon Brain Death ?, in <<Hastings Center Report>>, 27, 1,
1997, pp. 29-37) instead of putting forward the proposal of thereplacement of brain death with the cortical one, as he did when hewrote with Facler in 1992, Troug hopes for the traditional cardiorespiratory standard comeback in order to declare death and, at thesame time, he hopes for a separation between transplantations
problem and the debate on brain death. He thinks that doingtransplantation might be only carried on by finding a different excuse
from that one given till now by a definition of brain death, which is more
and more at a turning-point. And it was exactly with the attention drawn
to the need to give transplantations a moral basis that Troug wrote a
new article: R.D. Troug, Organ Transplantation Without Brain Death, in<<Annals of the New York Academy of Science>>, 913, 2000, pp. 229239.

In order to support their theory, the two doctors raise four
different subjects, which can be summarized as follows. First ofall, their endocrine-hypothalamic function doesn’t fail thosepatients, who were declared in brain death according to thetests then in use. That is to say, in some patients declared
brain dead the hormonal activity of the hypophysis gland and of
the nerve centre that governs this (hypothalamus) is persisting,and therefore, they have still a regular hormonal activity;
secondly a weak electrical activity can be registered in a lot of
patients in such a condition. This activity is concentrated insome areas of the cerebral cortex, and it’s destined to stop
after 24-48 hours. Thirdly some patients unexpectedly go on
responding to the external stimuli, as, for example, after thesurgical cut before the removal of organs the rise in heart rateand in blood pressure shows; (These observations refer topatients declared brain dead on the basis of only clinical British
criteria, which refer to the brainstem condition); fourthly, a lot of
declared brain dead patients have still the spinal reflexes,
which were very important when the definition of brain death
was given and in the immediate succeeding years. And, in myopinion, it’s right to consider them, as spinal marrow andbrainstem are joined to each other, and therefore you can’t ruleout lower brainstem involvement in spinal marrow activity forsure.
On the basis of a careful analysis of these four elements
the two authors came to the conclusion that the current clinicalmeans can’t prove the cessation of each function, but only ofsome, and actually they can diagnose, at the most, cortical
death.
The second point has been illustrated above all by Alan
Shewmon, an authoritative American neurologist, who, interalia, changed his mind during his career, at first he had been a
total brain death strong supporter then he was highly critical ofit.
Like the two previous authors’ incident, the starting point isalso in this case an empirical examination: organisms declared
dead using the current neurological standards survive much
longer than it could be imagined, and this presumes that brain
is not so essential to the human body’s integrated working, as,on the contrary, it was considered. Against the prevailing
opinion in the medical field, according to which brain is theorgan responsible for the integrative functioning of different
body parts, and, as such, it represents the body “criticalsystem”, Shewon formulates his own theory: our body “criticalsystem” isn’t limited to one single organ, even if it’s asimportant as brain. According to the neurologist this theory
could give an explanation for the declared in brain deadindividuals’ prolonged existences (a patient, who survived tillover 14 years, set up the record). These persons, most of themchild patients, keep undamaged some functions that were
thought to pertain to brain, such as body temperature control,
fluids homeostasis, the reaction to infections, the bodily growth,which are symptoms that an integrative functioning ispersisting.
Shewon concludes that it’s completely wrong to consider
brain death a signal of the near death of the whole humanbody. One of the pillars brain death is based on, that’s theopinion that brain is “our body central integrator ”, has been
completely disputed. Brain death doesn’t cause bodydisintegration, such a disintegration is rather consequence ofdamages which involve more organs and the achievement of a
critical level, “the point of no return”, that determines deathprocess start and makes ineffective any medical operation
aimed at avoiding the exitus. Therefore, according to Shewmon
the clinical condition of brain death shouldn’t be diagnosed as
unique condition for the determination of death, but you shouldrefer to more than one parameters, such as those which areconnected to the respiratory, circulatory and neurologicalEubios Journal of Asian and International Bioethics 15 (January 2005)
activity. 19 If the point of no return had been clearly exceeded,
the patient would have been disconnected from the artificial
ventilation devices, and after twenty minutes’ wait – a time
which is considered necessary by Shewmon to get sure thatthe subject vital functions can’t spontaneously recover – you
could proceed with the death declaration.
Therefore, Shewmon comes to the same Jonas’
conclusion in a different way. The big question that you canpose here is, whether these norms were respected,
transplantations would be still successfully possible. The
physical conditions aren’t for sure any longer ideal, and theadvantages are more limited, too; but now we have to wonder
whether the organs – as the latest medical studies prove – areremoved from donors who are in a borderland between deathand life, in this case the explantation itself causes them to die.
The legislations which admitted brain death are based on theassumption that the patient is already dead when the organs
are removed, but if, from the beginning, this assumption could
be arguable from the philosophical viewpoint, in the end it
turned out to be baseless from the scientific viewpoint, too. If
the legal premise for the removal of organs is that they are
extracted from persons who definitively lost their brain
functions, then it must be recognized that a lot of organs are
removed breaking the law openly. Instead of going on
operating deceptively, we’d like to discuss openly whether
removing organs, in a condition you can’t get over from, but
20that it doesn’t correspond to death yet , is admissible or not.
In the end, like in the artificial insemination also in organs
transplantation issues, the application of advanced medical
technologies raise new, difficult moral doubts about it. The
removing organs technical possibility urged us to use patients,
whose fate was decided, like spare material for other humanbeings; similarly the in vitro insemination technical possibility
could encourage us (even though in this case the Italian lawmaker bucked the trend) to use so-called extra embryos –destroying them – for some diseases treatment. In this case theproblem was: “What about the patients, who, although they
have been subjected to resuscitation, won’t be able to get overany longer because their brain stopped working?” In the end,
we expected to solve it in an oversimplified way, and that’s todeclare them dead, even if their human body can continue
working well and (for a long time) with the ventilation support,
perhaps it might work better than those few in vitro embryoniccells, which have no brain yet, anyway.

19

See for example D.A. Shewmon, “Brainstem Death” , “Brain Death”
and Death: A Critical Re-Evaluation of the Purported Equivalence, in<<Issues in Law & Medicine>>, 14, 2, 1998, pp.125-145 (nowtranslated into Italian and it’s entitled “ Morte del tronco cerebrale”,“morte cerebrale” e morte: un riesame critico della presunta
equivalenza, in the book edited by R.Barcaro, P. Becchi, Questionimortali. L’attuale dibattito sulla morte cerebrale e il problema dei
trapianti, Naples, in the press and the latest one: D.A. Shewmon, The
Brain and Somatic Integration: Insights Into the Standard Biological
Rationale for Equating “Brain Death” With Death, in <<Journal of
Medicine and Philosophy>>, 26, 5, 2001, pp. 457-478.
20
The problem has been clearly illustrated by two American scientists:
S.J. Youngner, R.M. Arnold, Philosophical Debates About the Definitionof Death: Who Cares?,in <<Journal of Medicine and Philosophy>>, 26,
5, 2001, pp.527-537.

29

Commentary on Becchi- Masahiro Morioka
Osaka Prefecture University
International Network for Life Studies
http://www.lifestudies.org
Today, it has become widely known among specialists thatcurrent brain death criteria are far from perfect. First, it became
clear that some brain functions still remain after a “brain death”
diagnosis. In many countries, brain death is defined as “thetotal loss of function of the whole brain,” hence if we maintainthis definition, it is clear that the current criteria fail to determine
true “brain death.” This may be shocking to lay people,
because they usually believe that the brain dead person’s brain
stops functioning, and they believe this to be a persuasive
ground for permitting organ transplants. When Professor Paolo
Becchi gave a lecture at Kansai University in 2004, a legal
specialist commented that he had never known this fact, and it
might influence his attitude toward brain death and organtransplantation.
Second, as Paolo Becchi referred to in his paper, thehearts of many brain dead people continue beating more thanseveral weeks after the diagnosis of brain death. In the longest
case it has lasted more than 14 years, which was reported inAllan Shewmon’s paper in 1998, and in this case the parents
have cared for their brain dead son at their home. This wasmade possible because the integral function of the brain deadbody became very stable after the diagnosis of brain death.
Similar case was reported in Japan, in which case a virtually
brain dead baby “lived” for 4 years in a hospital (I talked about
this case in (1)). These findings are sharply contrasted toordinary people’s beliefs on brain death. Many people believedthat the heart of a brain dead person stops functioning within aweek after the diagnosis. I suppose they have never imagineda case in which the heart continues beating for more than amonth/year.
Becchi talks about Hans Jonas and his contributions tocontemporary bioethical discussions. Jonas was a philosopher
who was staying outside the mainstream of bioethics, but I
believe we have yet to learn a lot of things from his philosophy
on life and nature. As Paolo writes in his paper, Jonas saw “life”
in the midst of the brain dead body of a pregnant woman. The
pregnant woman was losing consciousness in the state of brain
death, but Jonas saw something very precious in the warm
brain dead body of the woman who continued maintaining
another “life” in her uterus. For Jonas, the essence of humanlife doesn’t consist in brain function, nor warm body itself thebrain dead person maintains. I presume Jonas wanted to saythat the essence of human life is something that lurks behind
the warm living human body and makes it something more thana mere body. Human life is something that adds “dignity” to abrain dead body. This is, I think, what Hans Jonas tried to say
in his letters on brain death. It is time to rethink Hans Jonas’s
philosophy of life in terms of bioethics and life studies.
(1) Masahiro Morioka, “Current Debate on the Ethical Issues ofBrain Death,” Proceedings of International Congress on EthicalIssues in Brain Death and Organ Transplantation, University ofTsukuba, (2004):57-59.
http://www.lifestudies.org/braindeath02.html

Bioethics thick and thin: A review ofGenomics In Asia: A Clash of BioethicalInterests? edited by M. Sleeboom.
Reviewed by: Michael Barr, MA PhD

30

Eubios Journal of Asian and International Bioethics 15 (January 2005)

BIOS Centre, London School of Economics and Political
Science, Houghton Street, London WC2A 2AE, EnglandBook details: Margaret Sleeboom, ed., 2004. Genomics In
Asia: A Clash of Bioethical Interests? London: Kegan Paul.
321 pages. ISBN: 0-7103-0943-0. List price: £75.00.
To what extent can we speak of a distinctly ‘Asian attitude’
towards genomics and bioethics? What social and politicalfactors shape the reception of biotechnology in Asia? Do classinterests impact access to clinical services? What are theprocesses by which bioethical policies in Asia are formulated
and what are the linkages between political authority,
population polices, and the use of biomedical technology?
These are some of the questions explored in this volume,
which is a result of the Genomics in Asia conference held inMarch 2002 at the International Institute of Asian Studies (IIAS)
in Leiden. Readers of EJAIB will be familiar with many of the
topics and authors. Contributions are by: Anwar Nasim;
Gursatej Gandhi; Santishree Pandit; Soraj Hongladarom;
Noritoshi Tanida; Hyakudai Sakamoto; Shui Chuen Lee; Yu
Kam Por; Masahiro; Min Jiayin; Norio Fujiki; Mary Ann Chen
Ng and Darryl Macer; Yanguang Wang; and Chan Chee
Khoon.
It is clear from the contributions that we cannot speak of a
distinctly ‘Asian’ position towards genetics any more than we
can identify a unified ‘Western’ perspective. Genomics in Asia
presents a diverse range of viewpoints from the humanities andsocial and natural sciences. Issues include gene therapy, themoral status of nature, eugenics, cloning, genetic counselling,female infanticide, and the proper role of bioethics in the global
community. Topics are considered from Islamic, Christian,Hindu, Sikh, Confucian, Shinto, and Buddhist perspectives.
Thus, Genomics in Asia shows the range of claims made in thearea of bioethics in Asia and is to be recommended as a good
introductory reader to the variety of religious, philosophical andcultural problems raised by biomedicine.
Despite its value, however, the volume’s analysis ofbioethics and genomics remains rather thin in at least two
ways. First, while the book addresses a diverse set of issues
from a wide range of viewpoints, it nonetheless suffers from apaucity of methods. That is, it lacks the sort of interpretive
analysis that Clifford Geertz advocated in his account ofeffective research. In his example of winking, Geertz
emphasized the importance of distinguishing between ameaningful social gesture and a mere twitch of the eye. Hisargument was that we must move beyond a simple descriptionof winking as a physical act to the particular social
understanding of winking as a gesture. In other words, a ‘thin
description’ is the mere wink. A ‘thick description’ includes themeaning behind the wink and its symbolic import between
communicators, as well as the wider society.
Genomics in Asia is ‘thin’ in that much emphasis is given
to normative claims and assumptions but little use is made of
empirical data. When qualitative methods are used, it is in theform of surveys (eg Part III Genomics and Practices in Asia).
But surveys, as a method, are highly problematic since one
never knows how respondents have interpreted the questions.
Surveys have their use when combined with other methods buton their own tend to decontextualize knowledge. In short,surveys cannot gain access to the richness (indeed messiness)of lived experience. These are shortcomings that the editor
recognizes. Sleeboom writes that ‘more qualitative research’and ‘more empirical data from a comparative perspective’ isneeded to better understand the issues at hand (p. 20). I’d fully
agree and note that the IIAS’s new Genomics in Asia Research
Programme is designed to accomplish just this.
However, Genomics in Asia is also ‘thin’ in its treatment of
ethics. Here, I adopt Michael Walzer’s distinction. For Walzer,
thin morality is that which is universal and refers to humanity ina broad sense. Thick morality, on the other hand, is dependent
on specifics and adapts to social circumstances. In this sense,

morality gets its thickness only within the context of social andcultural relationships. In Genomics in Asia too little weight isplaced on specifics. As the book shows, part of the danger of
relying on a thin analysis is that you get unsubstantiated andrather poorly thought out arguments. Some chapters simply
claim too much. For instance, it is poor academic writing toassert that ‘there is no tradition of racism in China’ or that ‘there
are no Chinese who think that they are superior to particularminorities’ (p. 287). Again, it must be said the editor seems wellaware of these problems and rightfully faults some of thecontributors for mistaking their own views as being widelyrepresentative when in fact they are not.
But the reader should not let my critical tone put them off
to Genomics in Asia. Given the growth of genetic research in
Asia, bioethical reflection is sorely needed. In this respect, thevolume helps to fill a gap in the literature and provides a goodstart to the analysis of the issues. Overall then, the volume isuseful as far as it goes – but its greatest value may be inbringing attention to just how much work is needed yet in thefield of genomics and bioethics in the Asian context.
I end on a note of caution. Unfortunately, chapter numbers
referred to in the editor’s introduction do not correspond to theactual text which can be confusing for the more discerning
reader. And finally, the volume does not contain an index,
which is regrettable in light of Kegan Paul’s list price of £75.00.
References
C. Geertz, 1973. The Interpretation of Culture, NY: Basic Books.
M. Walzer, 1994. Thick and Thin: Moral Argument at Home andAbroad, Notre Dame: University of Notre Dame Press.

Perceptions of interpersonal
relationships held by
patients with obstinate
disease- Atsushi Asai, Yugo Narita, Etsuyo Nishigaki, Seiji Bito, Taishu
Masano, Yukari Take, Yasuhiko Miura, Koichiro Itai, andShunichi Fukuhara
School of Public Health, Kyoto University Graduate School of
Medicine, Konoe-cho, Yoshida, Sakyo-ku,
Kyoto 606-8501, Japan
Email: aasai@pbh.med.kyoto-u.ac.jp
Abstract
The objective of this study was to reveal the problems
related to interpersonal relationships which patients withobstinate diseases face, and consider the behavior, attitude
and medical intervention that healthcare and healthcare-related
professions should take in regards to these problems. Semistructured individual interviews were conducted with patientswith obstinate neurological diseases and observation of
outpatient care was also conducted. Data were analyzed byqualitative content analysis.
Patient diseases included
Parkinson Disease (PD), Amyotrophic Lateral Sclerosis (ALS),
myasthenia gravis, spinocerebellar ataxia (SCA), andprogressive supranuclear palsy (PSP). Findings highlighted
that patients’ disease and suffering was not understood fully by
patients’ families, that patients feel a lack of family support andcooperation, and that society’s level of understanding of theirdisease was also insufficient. Again, findings revealed thatpatients recognized their inability to perform personal activities
and to behave competently within the contexts of family andsociety. This lowered their self evaluation. These findings
highlight three needs: “the need for empathy,” “the need for selfEubios Journal of Asian and International Bioethics 15 (January 2005)31

esteem,” and “the need for support.” In this report, we discuss
the “the need for empathy” and “the need for self esteem.”

healthcare-related professions should take regarding these
problems.

This study was supported by a great-in-aid by Ministry of
Health, Labor and Welfare in Japan, “Outcomes Research ofSpecific Diseases”（PI:S.Fukuhara）（Grand no: H14-44）

Methods
Between May and November, 2003, we conducted semistructured interviews with outpatients of the Department of
Neurology at the Mie University Hospital. A convenient sample
was taken of patients whom the attending physician (YN)
judged to be physically capable of participating in an interview,whom were adults with decision-making capacity, whom could
communicate effectively, and whom provided their informed
consent to participate. Interviews were conducted in a room at
an arranged time following the patient’s check-up on a different
floor than the Neurology ward.
Interview questions focused on the following items: lifestyleproblems that the patient has faced as a result of his or her
obstinate neurological disorder, the patient’s family, local
community, medical requests, and any problems at the time of
medical decision making. Data on participants’ age, sex,
diagnosis, marital history, occupation and religion werecollected at the time of the interview.
Interviews were conducted primarily by one investigator(AA). However, the attending physician (YN) had conductedinterviews on two patients with Amyotrophic Lateral Sclerosis(ALS) in the medical examination room immediately following
their medical appointments. In regards to these two patients,
the attending physician judged that it would be too strenuous
for these patients to participate in an interview separate fromtheir medical appointments. An interview conducted by theattending physician was more appropriate on the following
basis: one patient was male with advanced ALS who was
physically disabled and had difficulty speaking; the other
patient was female who had difficultly breathing and required
written communication due to a tracheotomy. Upon obtaining
informed consent, observation on patient interaction via audio
tape was also conducted in order to compare with interview
data. This was conducted by the attending physician who
participated in this study (YN).
Observation and interview recordings were transcribedverbatim and analyzed using qualitative content analysis (6).
This consisted of, first, selecting portions of the transcriptionthat related to everyday interpersonal relationship problems
and to the patients’ perception of their family and other people,
next, coding these portions and, lastly, creating categories
based on the association between codes. The qualitative
content analysis was initially conducted by three investigator(AA, YN, and EN). The remaining investigators reviewed thesepreliminary results to further verify reliability of findings.
Research team discussions were also used to selectinterviewees' representative statements.
Content analysis validity was ensured by comparison ofinterview responses and observation recordings as well as bycontent analysis being conducted by multiple investigators.
When we compared each patient’s interview responses withthe patient’s utterances during his or her medical checkup, no
incongruities were found regarding patient symptoms, limits of
ADL, home environment, state of social welfare, primary
complaints and other lifestyle problems. No differences existed
in codes and categories created respectively by investigators.
Given the sensitive issues related to interpersonal
relationships, member checking interviews were not conductedwith patients due to possible psychological harm. This study
was approved by the Mie University School of Medicine Ethics
Committee.
All investigators have participated in theconception and design of this study, discussed the accuracy ofthe lists of codes and categories, and joined the writing of the
final version of the paper.

Introduction
In order for patients with obstinate diseases to receive ahigh level of medical care, strong interpersonal relationships
with friends, family and healthcare providers are necessary.
Several previous studies have shown that the patienthealthcare professional relationship is not always adequate,
which leaves the patient unsatisfied with his or her
relationships.
It has been suggested that healthcare
professionals are unable to provide sufficient psychologicalsupport to the patient, lack the ability to empathize, do notdisclose enough information and often do not encourage
patients to participate in medical decision making (1,2). Thishas fostered discussions on how healthcare professionals
shouldapproachthepatient-healthcare
professional
relationship.
Education on communication skills andexploration on building better relationships are also underway.
Certainly enough, a patient’s interpersonal relationships go
beyond those with one’s healthcare provider. Patients live andexist with their families as part of society. According toKleinman, illness is not merely a personal experience; it is amutual, communicative and, ultimately, a social experience (3).
As described above, we surmise that similar to, or even morethan, how the patient-health professional relationship has an
impact on a patient’s lifestyle, a patient’s interpersonal
relationships with his or her family and community – with which
they spend the majority of their time – have a significant
influence on patient’s QOL and welfare. In particular, medicalcare for patients with obstinate diseases who are physicallylimited by their disease necessitate social welfare and constantfamily support. The quality of care for patients with obstinate
diseases depends largely on a patient’s interpersonal
relationships as well as on other’s attitudes and behavior.
Accordingly, a survey study is needed on how patients withobstinate diseases maintain their relationships with family andsociety, and how patients’ families and communities recognize
and accept a patient’s disease and disabilities.
Even today in the field of psychiatry, families of patientswith depression hold a fixed idea that depression is “a diseaseof idleness” as a result of being unable to understand that
depression is a disease which requires careful consideration ofa patient’s condition. Accordingly, this necessitates healthcare
professionals to help patients’ families in understanding thepatient and his or her disease (4). There are also cases when apatient’s family suffers directly from a patient’s disease andbecomes physically tired and emotionally unstable (3). As aresult, a family’s emotional and physical capacities tounderstand the patient’s suffering are lost leading to possible
breakdown of familial relations.
Even within a patient’s
community, prejudice continues to exist against patients
infected with HIV or Hansen’s Disease (leprosy) (5).
Relationships of prejudice perhaps inflict a great deal ofemotional and social harm on the discriminated persons.
In Japan, as for as we know, there exist neither studies on
how patients with chronic obstinate diseases perceive theirpersonal and social interpersonal relationships nor on the typesof problems patient face in those interpersonal relationships.
We believe that an understanding of how patients perceive
their relationships will allow us to reveal part of the problems
inherent to these relationships and propose a possible way of
dealing with these problems from a medical perspective.
Accordingly, this study’s objective is to reveal the problems thatpatients with obstinate diseases face in their interpersonal
relationships. Based on our findings, we then consider the
behavior, attitude and medical intervention that healthcare andTable 1 Interview Participants’ background
Sex
Female632

Eubios Journal of Asian and International Bioethics 15 (January 2005)

Male
Age (range)
40 to 70
Diagnosis
Parkinson diseaseamyotrophic lateral sclerosis
myasthenia gravis
spinocerebellar ataxia
progressive supranuclear palsy
Religion
Buddhist
Christian
None
Living with their families

4

4
3
1
1
1
6
1
3
10

Results
Interview Participants
A total of 12 patients among outpatients with obstinate
neurological disorders were asked to participate. Ten patientsprovided their informed consent to participate in a semistructured interview and to have the interview recorded. The
two patients who chose not to participate were female with
Parkinson Disease.
Table 1 shows participants’ background. Our sample
consisted of six males and four females ranging in age
between 40 and 70 years old; all participants were living with
their families. Six participants were Buddhist and one was
Christian. Diseases included Parkinson Disease (PD, n=4),
Amyotrophic Lateral Sclerosis (ALS) (n=3), myasthenia gravis(MG) (n=1) spinocerebellar ataxia (SCA) (n=1), andprogressive supranuclear palsy (PSP) (n=1). In five of theinterviews, patients were accompanied by their spouses (ALS(n=3), MG (n=1), and PSP (n=1)).
Findings are based on content analyses of interviews
conducted with patients (n=10) who had provided theirinformed consent. This study focused on problems related tointerpersonal relationship that patients with obstinate
neurological disorders face. In our description of resultspresented below, codes are represented by single quotes,
categories are represented by double quotes and excerpts frominterviews are in italics.

participants could not play their ‘role as one of the breadmakers’ or their ‘role as the women in the family’ and would
consider themselves as ‘a disturbance.’ This caused many
participants to feel ‘a sense of inferiority’ and/or to feel
‘reserved’ towards family members.
Being unemployed in itself. (Male in his 40’s, ALS).
I can’t clean or do my house chores as I please. Although
my daughter in law does a lot of the chores and cleaning forme, I feel so reserved. (Female in her 70’s, PD).
3. “A lack of family support”
Patients’ needs were not always prioritized within thefamily. ‘Family circumstances’ were quite influential. For
instance, remodeling one’s home for easier movement was
impossible because of a child’s resistance to live at home
together or adequate family support was not available when
only husband and wife lived together due to one’s child havinggrown-up and now living away from home. Other examples
include families that have to deal with another family member
being sick. Psychological harm as a result of ‘awareness ofmale and female roles inside the house’ also existed. Results
described that in the case of female patients, husbands would
not actively do the house chores.
I want my daughter who lives in Tokyo and has yet to marry
to return home, but it is impossible to find work around here;
she is a high school teacher and would have to retake thelicensing examination. There are a lot of things to consider.
(Male in his 60’s, ALS)
There are times when I have to carry a small package orsomething, and I thought my husband would do it for me, but…
with my mother in law around, he just won’t do anything.
Unlike the children today who would immediately take noticeand offer to carry it for me, my husband will not do it even if I
ask him. (50 year-old female, PD).
Problems related to interpersonal relationships with people
outside of the family

1. “A lack of understanding from one’s family”
Participants felt that their pain and suffering from disease
was not sufficiently understood by their families. Patients feltthat they were blamed for “faking being ill” in times of family
conflict especially in cases of PD with fluctuation or when theirfamily acted insensitively towards the physical constraints or
failures brought about by their disease. That is, patients’families would ‘behave bitterly’ toward behavioral constraints or
failures due to one’s disease, and familial relationships would
become complicated when patients were blamed for ‘playing
sick.’ While we cannot say that this demonstrates a causal
relationship, a fraction of participants felt that their disease had
caused a great deal of stress for their family and, thus, hadcaused ‘family strain.’
Dissatisfaction… I would probably say it lies in how much
my family understands. I move around a lot and my familyprobably thinks that not much is wrong. Thus, I guess it isunlikely that my family understands my position. (Male in his
50’s、SCA).
In getting sick, all my worries are family-related. How can I
say this? In becoming disabled like this, my family assumes
that I brought my Parkinson Disease on myself (female in her
60’s, PD).

4. “A lack of understanding from society”
Participants felt that, similar to their feelings toward theirown family, society did not understand their pain and sufferingbrought about by their disease. Society is defined here as
those interpersonal relationships outside of the family. Many
participants suffered from people being ‘cold’ and ‘notunderstanding.’ They wished that people would ‘be kind’ and‘be considerate.’ While no concrete examples were provided,
many participants felt a sense of ‘discrimination, prejudice.’
Other patients felt the need to ‘personally explain’ one’s
disease and raise people’s awareness since society ‘lacked
awareness and understanding of disease’. Even thoughpeople did not see a patient’s symptoms to be severe enoughto be fully recognized and to be treated kindly, symptoms wereindeed quite painful for the patient him or herself.
(Interviewer asks, “Do you have any requests towards
your family or the people around you?”) That would be to bekind. To be kind is my first wish. My grandchild already hatesme. He sometimes says, “When grandma comes, we can’t doanything; you don’t need to come grandma.” My daughter inlaw does a great deal for me, but… even with her, I feel that I
am a trouble. I feel that I am a bother. If I go out with them,
they have to walk slowly and lag behind. No matter what I do, I
always need other people’s help. (70 year-old female, PD).
Ultimately I guess I want society to have someconsideration for my disease… It would be hard to answer how
to do this, but ultimately (in order to have people understand),one has to confess to be sick and get people to understand.
(50 year-old male, SCA).

2. “An inability to carry out one’s role as a family member”
Obstinate neurological diseases make it difficult forpatients to carry out their role as a family member. Interview

5. “Inability to participate in society”
The fact that patients could not perform the same tasks asa healthy individual –’we cannot do anything together’ – limited

Problems with interpersonal relationships with family members(household interpersonal problems)Eubios Journal of Asian and International Bioethics 15 (January 2005)
patients’ ability to participate in society. In regards to specificactivities daily living (ADL), participants often felt distressbecause of their ‘inability to do something alone’ and the need‘to tolerate’ having always to go places and do things withcaregivers.
Even with walking, this does not work. So when walking, I
bend all the way over. Unless I lean to the side, I can’t go
forward. My physician says to stop walking for a little while
when that happens and then to start walking again. So I stop
for a little while and struggle walking with my cane while
everyone just passes by and goes ahead. Why did I have to
get sick like this… (60 year-old female, PD).
6. “The eye of others”
The inability to participate in society due to constraints on
one’s everyday movements was extremely stressful. However,having people watch one’s each and every movement made it
even more difficult to live with an obstinate neurologicaldisorder. Participants would always ‘feel conscientious ofothers’ and ‘different from other people.’ For instance, when apatient would fall down in public, he or she would feel
conscience of ‘looking bad’ while also worrying about physicalharm. Participants would ‘worry (feel concerned)’ about ‘beinga trouble to others’ and about one’s bodily movements seeming‘unpleasant’ to others. Similar to how participants felt towards
their family members, many felt ‘a sense of inferiority’ insociety. Even patients with myasthenia gravis who are freefrom most symptoms felt ‘different from other people’.
If I were to fall while on a trip or out shopping, I think “oh,this looks bad” (Interviewer comments, “While, in fact, yourbody is much more important than looking bad”). “Looking bad”
is also a consideration. (60 year-old female, PD).
Now, my lifestyle is very much like the lifestyle of a normal
person. I try not to become tired. But when I do get tired, Ieither take a morning nap or an afternoon nap. When I am
really busy, I am up all day, but… well, I try to lay down either
in the morning or early afternoon. (40 year-old female, MG).
Discussion
Findings highlighted that patients’ disease and suffering
are not understood fully by their families, that patients feel alack of family support and cooperation, and that society’s
understanding of disease was also insufficient. Again, findings
revealed that patients recognized their inability to performpersonal activities and to behave satisfactorily within thecontexts of family and society. Ultimately, this lowered theirself evaluation.
Before we assess the above findings, we would like toconfirm this study’s limitations and problems. Firstly, the final
sample consisted of ten patients. Although we used qualitativeinterviews in which sample size inherently does not affect study
quality, our sample size was limited when compared to similar
studies that have been conducted abroad. Accordingly, thisstudy serves as a preliminary survey. Problems beyond theitems referred to by interview participants may exist. Secondly,
it is possible that the five patients who were accompanied bytheir spouses at the time of the interview were unable toexpress their honest opinion regarding their spouse’s behavior
and attitude. However, we were able to gain sufficientunderstanding of patients’ feelings towards their families frompatients who were not accompanied by their families. Thirdly,
this study’s sample consisted of patients with obstinate
neurological disorders who were able to visit the hospital on
their own or with additional help in order to receive outpatientcare.
Accordingly, it is possible that perceptions ofinterpersonal relationships differed among patients whose
disease was too advanced to receive outpatient care. It is also
possible that perceptions of interpersonal relationships differedamong patients with a non-neurological chronic obstinate
disease. Lastly, and most importantly, results are ultimately
based on patients’ subjective perceptions and do not reflect the33

actual degree of understanding and support among patientfamilies and society. Findings consist of “what patients feel”
and “what patients think” and do not provide an objective
account of what is actually occurring in a patient’s
surroundings. This study included neither interviews withpatient families nor observation of what occurs outside theexamination room, which could have substantiated patient’s
views. Accordingly, this study does not contain data analyzed
from a third-person perspective on patient-family or patientcommunity relationships.
After considering these limitations and based on the items
expressed by patients related to relationships with family,community and oneself, we would like to discuss the type oftraining healthcare professionals should receive and what canbe done.
There are several lessons that healthcare
professionals should learn from this study’ findings, but wehave summarized these lessons in the following three needs:“the need for empathy,” “the need for self esteem,” and “theneed for support.” In light of the excessive literature on theneed to support patients with obstinate neurological disease in
the areas of social welfare, care giving, nursing and medicine,
this report focuses on “the need for empathy,” “the need for self
esteem.”Certainly empathy is essential to interpersonal
relationships. Perhaps all people have experienced the pain of“no one understands” or the happiness of “being understood.”
Even if one can not heal a patient’s disease, a healthcare
professional can ease a patient’s suffering just by sharing theirpain. Nevertheless, it is impossible to understand fully anotherperson. In particular, it is extremely difficult to share thesuffering of pain which one has never experienced. Sufferingof disease is similar to QOL from the perspective that both
depend on a patient’s subjective perspective. The everyday
pain of patients with obstinate diseases is immeasurable. It iseven difficult for a patient’s family to understand the feelings ofpatients whom live day-in and day-out with disease.
Interpersonal relationships that are unable to provide and, thus,lack empathy are sources of pain.
Accordingly, health professionals need to ask themselves
constantly, “Am I understanding the patient’s suffering?” Vital
questions include, “Am I able to stand in the other’s shoes?”“Am I able to see things as the other does?” and “Am I
interacting with consideration?” So the question remains as to
how we can be empathetic human beings. Ethically speaking,this question can be restated as how we can acquire the virtueof “empathy.” This report will not pursue this difficult query, butrather seeks to confirm the absolute need to maintain an
empathetic demeanor in the context of patient care.
Enrichment of medical education within this area is also
desirable.
As Kleinman has pointed out, disease alters a patient’s
world and disease destroys patient families (3). Maintaining
healthy relationships is difficult inherently, but a patient’s
disease and the disabilities that accompany that disease further
complicate that relationship. It is easy to imagine the difficulty
for a family to understand a patient’s suffering and fully
empathize with that patient in a household where the familial
relationship is dysfunctional. Likewise, we should not forgetthat it is difficult for healthcare professionals to understand the
feelings of a family who is caring for such a patient. Under
these circumstances, a healthcare professional is able toeducate families on how to understand a patient’s disease as
well as able to support families who face physical,
psychological and economic stress by living with the patient.
Policies that promote caregiver support, consideration of
burden, and improvement of caregiver QOL are important. For
instance, given that physical constraints are inherent to several
neurological diseases, it is necessary for healthcare
professionals to explain to the family that, as a result of thedisease, the patient’s condition will worsen no matter how hard
he or she tries in rehabilitation and that regardless of a

34

Eubios Journal of Asian and International Bioethics 15 (January 2005)

treatment’s quality, the patient’s prognosis will remain poor. It
is also valuable to inform families of social resources such as
caregivers and social welfare. Likewise, we believe that it isimportant for healthcare professionals to be empathetic
towards the suffering that a patient’s family experiences.
However, further exploration is needed on whether healthprofessional can and, if so, how far they should intervene infamily problems which, ultimately, are private – except
domestic abuse to the patient.
In regards to a lack of understanding in one’s community,
we recognize that discrimination and outright disregard derives
from ignorance and illogical hate.
This highlights theimportance of further spreading the concepts of human rights
and promoting general education on disabilities and medicalcare. However, a societal lack of understanding for disabilities
and disease cannot be cured by medical care alone. A change
in behavior toward society’s weak is needed.
This study revealed that patients severely lose selfesteem. Patients feel ashamed as a result of not being able tofulfill their roles, which consequently instills feelings of selfinsufficiency and makes patients conscientious of others.
Feelings of inferiority also arrive as a result of not being able toparticipate in society. That is, this can be summarized by aself-image of I am ‘abnormal and unworthy.’ Kleinman
described that it is an indispensable necessity for healthcare
providers to be highly sensitive to stigma and feelings of shame(3). Healthcare professionals should consider how to preservea patient’s self-esteem in the contexts of a patient-healthcare
professional relationship and a medical care approach.
Healthcare professionals cannot forget that imprudent behavior
and communication can easily hurt a patient. Medical care ismerely not providing benefits to patients. Rather medical careis based on “never causing injury” and “never harming.”
Therefore, medical education on the modality of the patienthealthcare professional relationship and on the fulfillment ofprofessional ethics is indispensable.
The ultimate question, however, is what can healthcare
professionals do in regards to the sense of shame andinferiority felt by patients with obstinate disease in their privateand social lives? Unquestionably, this challenge is quite difficult
to meet with only a medical approach. Today in Japan, there
are currently no effective policies to eradicate a patient’s selfperception of being ‘abnormal and unworthy.’ But, if patients,
their families and friends, healthcare professionals and thecommunity fundamentally change their standards of selfevaluation and the significance of and value in humanexistence, this social state may improve. Hence, a first step torecovering patients’ loss of self-esteem could be found in asocietal sharing of awareness.
This awareness would
recognize that the significance of and value in human existence
can be determined not by being able to do something but inways which maintain a patient’s human dignity, that theconcept of normality itself is strictly illusionary, that one needs
neither to be identical with another nor to be self-conscientious,
that, regardless of differences among individuals, a person can
not live without the support of one’s community and others,
and, accordingly, that one does not need to lower themselves
just because they receive support from family and community.
References
1 Nishigaki E, Asai A, Ohnishi M, Fukui T: Concepts of trust anddistrust in physician -patient relationship in Japan. Taijin shakai shinri
kenkyu 2004; 4: 11-20.
2 Nakamura A: Zenkoku yoron tyosa shoho (Report of National Public
Opinion Polls), Asahi Soken Report 147, Tokyo, Asahi Shinbun,
2000, 82-92.
3 Kleinman A: The illness narratives Suffering, healing and the humancondition, 1988, Basic Books Inc., New York (Japanese translationby Eguchi S, Itsukida S, Ueno T, Seishin Shobo, 1996, 207-245.
４ Sasaki T. Naiinsei-utsubyo to dai-utsubyo. Kokoro no Kagaku 2004;
116: 74-79.

５

Kumamoto Nichinichi Shinbun Sha:Kensho Hansen-Byo Shi,
Kawaide-shobo Shinsha, 2004, Toyko.
6 Flick U: Qualitative Forschung, 1995, Rowoht Taschenbuch Verlag,
GmbH, Hamburg (Japanese translation by Oda H, Yamamoto N,
Kasuga T, Miyaji N, Shunshu-sha, 2002, Tokyo, 219-44

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