The challenge of universal bioethics and genetics
Journal: pp. 70-72 in Protection of the Human Genome and Scientific Responsibility , Editors: Michio Okamoto, Norio Fujiki, & Darryl R.J. Macer, (Eubios Ethics Institute 1996).
Author: Darryl R. J. Macer
UNESCO IBC member; HUGO Ethics Committee member; Inst. Biol. Sciences, Univ. of Tsukuba
This seminar, organised by MURS-Japan, fits into a series of meetings designed to encourage the discussion of the ethical and social issues that human genetics research brings. The series of meetings, especially the Fukui Seminars supported by numerous bodies including the ELSI Working Group of the Ministry of Education, Science and Culture and MURS-Japan, have helped develop the discussion of these issues from an international perspective, broadening the debate on the impact of human genome research beyond the shores of North America and Europe. The proceedings of the 1992 and 1993 Fukui Seminars have been published in English and Japanese (1, 2), and these proceedings are also available for free access on the World Wide Web of Internet from the Eubios Ethics Institute site (http://eubios.info/index.htm"), as will the proceedings of this 1995 series of MURS-Japan meetings.
The importance of these meetings and the publications is that they are the most extensive collection of Japanese and Asian contributions available in English on the ethical and social impact issues of human genetics, and the most extensive collection of non-Japanese contributions available in Japanese language. We could therefore see one of the challenges of MURS-Japan is to be a representative for the development of scientific responsibility throughout Asia. This international approach that we have seen should be of benefit to Japan, and the international community, if it is only continued and built upon. These seminars are also the starting points for the study of ELSI issues in Japan, and they were achieved despite rather limited budgets (3).
The challenge that the data presented in those meetings made has been taken up in international forums, such as the UNESCO International Bioethics Committee and in the international genetics and bioethics forum of the Eubios Ethics Institute. It should also be taken into other international forums including scientific ones such as HUGO and bioethical discussion. They also need to be built upon within Japan. The opinion surveys presented in the 1993 seminar in particular, survey the range of opinions and decision-making in bioethics that people have in 13 countries in the Asia-Pacific region. What the data suggests is that the same concerns and hopes are found, that there is similar wide diversity of opinions in all countries, that international approaches do provide insights for policy development at both national and international level, and there is strong need for education and debate about bioethics and genetics.
The call for international approaches is also based on the shared biological heritage and destiny of human beings in all "nations", and the precedents for international law to protect common interests of humanity. However, the strongest call is based on another fact, that people everywhere live in groups of societies called nations, and these are shown to be microcosms of diversity. The range of the genetic, social and spiritual diversity inside each is as broad as the total of all nations. This is universal bioethics. This descriptive reality of bioethics challenges the prescriptive side - policy and guidelines - to be international (4).
There are two ways to think of the term bioethics, one is as descriptive bioethics - the way people view life and their moral interactions and responsibilities with living organisms in life. The other is prescriptive bioethics - to tell others what is good or bad, what principles are most important; or to say something/someone has rights and therefore others have duties to them. Both these concepts have much older roots, which we can trace in religions and cultural patterns that may share some universal ideals (5). This is especially true when we talk of reproduction and genetics, themes of family, which have been discussed for millenia.
Tolerance and harmony are two of the themes that need to be emphasised
given this diversity. However, tolerance is no excuse for lack
of responsibility, and scientists have additional responsibilities
because they have special knowledge. It is symbolic for these
meetings that the theme is genetics, for genetic information is
in the simplest for of knowledge, a linear sequence of ATCG; however,
this can give rise to the most complex form of spirit and matter
we know, human beings, and how we use this knowledge leads to
some of the most difficult questions of individual and social
2. Opinions about genetic screening and therapy in Japan
The International Bioethics Survey performed in 1993 in Australia,
Hong Kong, India, Israel, Japan, New Zealand, the Philippines,
Russia, Singapore and Thailand considered some of the issues of
medical genetics, at a descriptive level (2, 4). A basic question
of descriptive bioethics is how universal are the bioethics of
different people inside every society, and between every society.
The topics included attitudes to science; environmental concerns;
genetic engineering; privacy, genetic diseases and AIDS; prenatal
genetic screening; gene therapy; assisted reproductive technology;
and education. In 1991 (1) and 1995 (6) I have also conducted
surveys of different population groups inside Japan, and in Table
1 are the approval for fetal diagnosis and gene therapy, and in
Table 2 are the reasons given for the decision about fetal diagnosis.
Table 1: Approval of fetal
diagnosis and gene therapy by different groups in Japan
|Some genetic tests can be predicted in the fetus during the early stages of pregnancy. Do you think such tests should be available under government-funded health care? Yes; No; DK = Don't Know (G)|
|Would you want such a test during your/your spouse's pregnancy? (P)|
|If tests showed that you were likely to get a serious or fatal disease later in life, how willing would you be to undergo therapy to have those genes corrected before the symptoms appear?
Yes=Yes, or Very & somewhat willing; No= No, or Very & somewhat unwilling
|If you had a child with a usually fatal disease, how willing would you be to have the child undergo therapy to have those genes corrected?|
For details see text. Public, Biology teachers (BioT.), Scientists (Scie.) are national random samples, mail response (T = tel.). Academics, 1991 (Ref 1); 1995 - Japan Ass. Bioethics; Doctors = university physicians.
The acceptance of gene therapy generally increased since 1991,
while the approval of fetal diagnosis stayed similar. The 1995
public survey was conducted using telephone interviews, with a
50% response rate, whereas the mail response surveys in the public
are about 25%. What the results suggest is that more people say
they don't know than the surveys using written surveys with lower
response rate, which could be related to possible selection bias
of mail surveys. The 1993 nurses sample was from Fukui, with the
kind cooperation of Prof. Fujiki and Dr Hirayama, and they were
the most supportive of providing fetal diagnosis under health
insurance. The 1995 academic sample was members of the Japan Association
of Bioethics, and the 1995 Doctors sample was of university physicians.
They were least supportive of fetal diagnosis, but the reasons
they gave (Table 2) had some interesting differences from the
public and medical students. Less said to "save life",
"parent's convenience", but more gave reasons for their
decisions, and said "improve genes" or "economy"
(support for eugenics), and "fetus has a right to life",
"unnatural or Playing God", "health risk",
and "eugenic" concerns.
Table 2: Reasons given
for decisions about fetal diagnosis by different groups in Japan
|(see Table 1 details)|
|Right to know||11.6||11.4||11.8||3.5||12.2||18.4||8.8||3.3|
|Depends on situation||7.3||16.5||3.5||1.6||18.8||17.0||4.5||6.4|
|Health care is a right||15.9||16.5||12.7||19.8||0||0||1.8||4.5|
|Fetus right to life||4.7||7.6||2.1||1.2||4.2||6.6||0.9||1.9|
|Eugenic / Misuse||6.4||6.3||0.9||1.4||4.2||2.6||0.3||0.4|
|Play God / unnatural||2.2||1.3||0.3||0.5||8.0||7.8||2.1||0.7|
3. Prescriptive bioethics and UNESCO
The draft UNESCO Declaration on Protection of the Human Genome includes 20 articles, and it is on pp.23-24 of this book. It must be general to obtain the broad support of the United Nations General Assembly, but it encourages national governments to enact laws to protect people against misuse of genetics. It is hoped to celebrate the 50th anniversary of the UN Declaration of Human Rights. The idea of Genethics may seem to be reinforced by the creation of a special Declaration to look at its bioethics. However, if we look at all of its 20 articles we see them all in previous laws or Declarations. What this Declaration does is to bring them together in focus in one document, to supplement existing laws, and act as a catalyst to make us remember what bioethics we should have, and how we should treat our fellow person and the world in which we live.
1. Fujiki, N. & Macer, D.R.J.,eds., A HREF="../HGR.htm">Human
Genome Research and Society, (Eubios Ethics Inst. 1992).
2. Fujiki, Norio & Macer, Darryl R.J., eds., A HREF="../IND.htm">Intractable Neurological Disorders, Human Genome Research and Society, (Christchurch: Eubios Ethics Institute, 1994).
3. Macer, D. "The 'far east' of biological ethics", Nature 359 (1992), 770.
4. Macer, D. (1994a), A HREF="../BFP.htm">Bioethics for the People by the People(ChCh: Eubios Ethics Institute, 1994).
5. Macer, D.R.J., "Bioethics: Descriptive or prescriptive?", EJAIB 5 (1995), 144-6.
6. Macer, D. et al. "1995 Surveys of bioethics among academics in Japan", EJAIB 6 (1996), 29-35.
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