Second International Bioethics Seminar in Fukui: on Ethical, Legal and Social Issues raised by human genome research

- Darryl Macer, Ph.D.

Institute of Biological Sciences, University of Tsukuba, Tsukuba Science City, 305, JAPAN

Eubios Ethics Institute Newsletter 2 (1992), 30-31.

In this edition, there is discussion of two recent international conferences that focused on the ethical issues connected with the Genome Project. There is also a letter on dietary fat and heart disease, relating to genetics and eating habits.

I attended the Houston meeting above, and returned to Japan to attend this other meeting on similar issues. For more information about the Houston conference contact Dr. H. Bouma or Dr. J.R. Nelson, The Institute of Relgion, University of Texas Medical Center, P.O. Box 20569, Houston, TX 77225, USA.

After being stimulated by the Houston meeting, and appreciative of the way that people from many fields participated together in a joint discussion understandable to all, there was more of a contrast when I attended the meeting in Fukui, 20-21 March, as seen in comments made in Nature 356: 368.

The first International Bioethics Seminar was held in Fukui in 1987, looked at Human dignity in medicine. With the subtitle of a Seminar on Ethical, Legal and Social Issues on Human Genome Research, the Second International Bioethics Seminar in Fukui was held under the auspices of the Study Group on Human Genome Research supported by the Ministry of Education (Chairman: Prof. K. Matsubara) and Fukui Medical School (President: Prof. K. Torizuka), and cosponsorred by UNESCO, WHO, CIOMS, IAHB as well as the Japan Society of Human Genetics and the Japan Society of Bioethics. The chairman was Prof. Norio Fujiki, who had arranged for many good speakers to come.

Although it was attempted to confine the discussion to those issues concerned with medical genetics, and the ethical, legal and social impact (ELSI) arising from the use of medical genetics which require urgent attention, it was not to be. The scientists seemed generally incapable of addressing these issues, and they usually exhibited much immaturity in bioethical discussion when they did. This multidisciplinary discussion included specialists of biology and medicine among the study group of Human Genome Research, with members of the Japan Society of Human Genetics, with people from areas such as philosophy, sociology, psychology, law and economics, among members of the Japan Society of Bioethics. A further twelve foreign academics joined the simultaneously translated discussion of these issues.

Over 200 participants took part in the conference, including 12 foreign academics (Canada 1, China 1, France 1, New Zealand 1, South Korea 1,UK 1, USA 4, USSR 1). who joined about 30 invited Japanese speakers, from various fields of natural and social science. The science and ELSI issues were discussed with about 150 other people including some members of the general public. The seminar was ended by an open public lecture delivered by a well known Japanese science commentator, T Tachibana to about 500 public.

At this meeting a clear difference was apparent between scientists who lack appreciation of how to communicate science to a broader academic audience and who appear to lack any awareness of the issues arising from their research, compared with a few scientists who seem able to attempt understanding of the ethical issues involved. The first day included 8 papers on description of genetics research and 2 papers on bioethics (1 paper by a foreign invitee). The second day consisted of 21 papers and a panel discussion on bioethical issues (8 papers by foreign invitees). Six of the nine foreign invitees (who all discussed bioethical aspects) were limited to ten minute presentations. One could have wondered about the relevance of much of the seminar to the title of the seminar. When the seminar proceedings are published, all papers will be of similar length, so that this discrepancy will not be so apparent (they will be published in English and Japanese, edited by Prof. N. Fujiki and myself). In fact the bioethics papers are actually longer then the scientific papers in print!

It was not the imbalance of presentation time that was the most disturbing feature. What was disturbing was that many of the scientists left the seminar during the second day, and by the time the conference turned to talking about scientist's responsibility and about the Movement for Scientific Responsibility, some of the presenters of major scientific papers had left the seminar. This exodus was noted by the chairman. It was to their own loss, and could one also say shame, to miss listening to an interesting series of international and Japanese speakers that the organisers had managed to assemble, and to miss the panel and conference floor discussion. The discussion of bioethical issues arising from some of the scientist's papers had been deferred until the second day, but then it was found that they were gone!

At least the scientific presenters did come to the conference, which must be some merit. One must really ask how scientist's may be regarded who do not want to join in the wider debate about the impact of their research. They must not think that the "sacrifice" of 1-3% of the science funding to ethical, legal and educational studies, alleviates their need to participate in the debate. Perhaps we can suggest that in a converse way to how half of this bioethics seminar consisted of scientific explanation, including presentation of scientific results, scientific congresses should not forget to include some discussion of the bioethical and legal issues. A few lectures and discussion may be sufficient to make scientists aware of the issues that arise from genetics research. This has already occurred at some scientific meetings worldwide, including several in Japan. This may be the only way to sustain, and in some countries, initiate, a discussion of bioethics among scientists.

Let us hope that the good points presented at this conference, like those of the Houston meeting, will reach a wider audience. The discussion of bioethics between disciplines has occurred in Japan, in the 1990 CIOMS conference on similar issues. It is possible, but requires the willingness of all involved, and removal of the attitude that there are experts in special fields who should restrict their comments to those fields. Bioethical issues are multidisciplinary from the beginning, and must be considered as such in joint discussions comprehensible to the public.

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