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 responsibility.

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

%	Public			Students		Academics		Doctor	Nurse	BioT.	Scie.
Date	1991	1993	1995	1991	1993	1991	1995	1995	1993	1991	1991
N	532	352	76(T)	198	435	706	173	101	294	225	540
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)
Yes	76	76	72	76	74	71	54	53	82	73	71
No	7	8	7	7	9	9	28	28	3	8	8
DK	17	16	21	17	17	20	18	19	15	19	21
Would you want such a test during your/your spouse's pregnancy? (P)
Yes	57	61	56	58	66	59	42	48	57	61	60
No	17	16	24	12	10	17	39	32	10	15	17
DK	26	23	20	30	24	24	19	20	33	24	23
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
Yes	54	66	51	51	74	53	56	-	54	65	54
No	30	21	16	36	16	28	32	-	25	22	29
DK	16	13	33	12	10	19	12	-	21	13	17
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?
Yes	66	74	55	66	76	62	64	-	64	73	62
No	18	11	8	16	9	17	20	-	16	14	17
DK	16	15	37	18	15	21	16	-	20	13	21

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

%	General (G)				Personal (P)
(see Table 1 details)	Acad95	Doctor	Publ.93	Stud.93	Acad95	Doctor	Publ.93	Stud.93
N	173	79	339	430	172	76	330	423
Not stated	17.2	24.1	35.1	42.3	22.1	26.3	45.3	42.8
Don't know	1.3	0	1.8	1.4	1.0	1.3	1.8	4.3
Save life	3.9	2.5	16.5	8.1	3.8	1.3	18.7	13.0
Parent's convenience	7.3	5.1	15.3	14.9	7.0	7.8	17.2	22.2
Right to know	11.6	11.4	11.8	3.5	12.2	18.4	8.8	3.3
Improve QOL	2.2	5.1	2.9	0.9	3.8	4.0	3.6	0.9
Depends on situation	7.3	16.5	3.5	1.6	18.8	17.0	4.5	6.4
Improve genes	3.0	2.5	1.5	1.2	1.9	5.3	0.3	0
Other benefit	4.3	3.8	7.7	3.5	5.2	0	6.9	4.5
Health care is a right	15.9	16.5	12.7	19.8	0	0	1.8	4.5
Economic reason	6.0	18.8	0.9	1.2	0	4.0	0	0
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
Ethics	2.2	1.3	2.1	0.5	0	0	1.2	0
Health risk	0.4	0	0.3	0.2	2.8	1.3	0.9	1.9
Other harm	4.3	2.5	5.3	3.7	5.2	4.0	2.7	1.7

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.

References

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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