pp. viii-x in Human Genome Research and Society
Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1992, Eubios Ethics Institute All commercial rights reserved. The copyrights for the employees of the US Government, are subject to other copyright arrangements. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Editorial summary

Norio Fujiki
Dept. of Internal Medicine & Medical Genetics, Fukui Medical School, Matsuoka-cho, Fukui 910-11, JAPAN

Darryl Macer
Institute of Biological Sciences, University of Tsukuba, Ibaraki 305, JAPAN

June 1992

The Human Genome Research Project is an international effort to map and sequence all of the human DNA. The diagnosis, treatment and prevention of incurable genetic diseases through the development of gene mapping and DNA sequencing, as well as due to the clarification of the mechanisms of gene expression, has been tremendously developed by the additional funding of genetic research from the focused Human Genome Research Projects in the USA, Europe and Japan. It was the focus of the Second International Bioethics Seminar in Fukui.

Human dignity in medicine was discussed at the first International Bioethics Seminar held in Fukui in 1987, which included a keynote address of Prof. Jean Bernard, Chairman of the French National Consultative Committee on Ethics in Life Sciences. Since that time, basic and applied genetic technology has greatly developed so that genes that cause specific genetic diseases have been identified, including genes and mutations that are causatively linked to cystic fibrosis, muscular dystrophy, neurofibromatosis and fragile X syndrome, as well as cancers. Within a few years we can expect to know all the gene sequences of human beings, though it will be longer before all this information is processed and can be applied for medical therapy.

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 at the Phoenix Plaza, Fukui, Japan, during March 20-21, 1992. It was held under the auspices of the Study Group on Human Genome Research supported by the Ministry of Education (Chairman: Prof. Kenichi Matsubara) and Fukui Medical School (President: Prof. Kanji Torizuka), and cosponsorred by UNESCO, WHO, CIOMS, IAHB as well as the Japan Society of Human Genetics and the Japan Society of Bioethics.

We 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. International moral aspects were emphasised, not specifically concerned with how we, human beings, should survive in this period of rapid technological development, but rather concerning the required multidisciplinary processes required to attempt to solve some of the ethical issues. This multidisciplinary discussion included representatives of 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 distinguished 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. Unfortunately, other invited foreign guests could not come at the last minute, one from each of France, India, Spain and the USA. The science and ELSI issues were discussed with others, including some members of the general public. The seminar was ended by an open public lecture delivered by a well known Japanese science commentator, Takashi Tachibana to about 500 people who came in the rain to listen to it.

The proceedings began with welcomes from conference chairman Norio Fujiki, and Kanji Torizuka, President of Fukui Medical School, and the Governor of Fukui prefecture, followed by messages from representatives of UNESCO, WHO and CIOMS. An overview of human genome research was presented by Kenichi Matsubara (chair George Cohen), followed by examples of human genome research in Japan (chair Itaru Watanabe) with papers describing the physical mapping of chromosome 21 by Yoshiyuki Sakaki, and on human genome research in immunology by Fumihiko Matsuda. These were followed by two papers presenting a historical background on bioethics in medical genetics (chair Kazumasa Hoshino) by Michael Yessley and Kiyoshi Aoki. Next came some examples of clinical applications of medical genetics (chair Fumimaro Takaku) with papers by Norio Niikawa, Isamu Nishisho, Kaoru Suzumori, Hiraku Takebe and Yasuo Nakagome, looking at genomic imprinting, presymptomatic diagnosis of APC, preimplantation diagnosis, genetic counseling and informed consent, and on mapping the human Y chromosome.

An evening reception party was held with addresses by the mayor of Fukui, and a stimulating address "Ethical feelings in promoting sciences" by a Nobel laureate Kenichi Fukui. The next day was a very full programme, with a number of speakers reduced to short presentations. The first session was discussing social issues in medical genetics (chair Keiko Nakamura) including papers "Human genome analysis and human rights", by Tadami Chizuka, an address by Takashi Tachibana, "New age of genetic tests is coming", Kenji Makino, "ELSI in human genome research", Asao Fujiyama, "Social problems of human genetic research - a historical perspective", by Shohei Yonemoto, "Medical genetics, social issues, and the genome programme", by Derrek F. Roberts, "Neo-eugenics and disability rights in philosophical perspective", by Daniel Wikler, and "International aspects of genetic discrimination", by Paul Billings. The wealth of presentations was somewhat overpowering, but the focused attention on the possible misuses of genetics that can occur both intentionally and unintentionally as societal attitudes change. There are already some cases of genetic discrimination as a result of genetic testing reported in North America, and attention is focused on policy and legal initiatives that are needed to regulate this technology. It reminds us of the national, sexual and racial discrimination common in many countries of the world, and these must be poignant reminders to us of the need to avoid adding any more excuses for discrimination to those we are already trying to combat.

The next session focused on international opinions over the use of genetic screening, chaired by Norio Fujiki. Questionnaires on hereditary and views of handicapped people are being used to analyse opinions in Asian countries. Unfortunately co-researchers from India and the USA could not join this meeting, but the results of such opinions in Japan have been published previously, and at this meeting the results of surveys in Thailand were presented by Pinit Ratanakul. These cross cultural surveys that were compared in the chairman's remarks are important to allow us to look at what perceptions of hereditary disease and handicap are international, and this may also draw to our attention for education of the general public. Other surveys included papers by Darryl Macer, on Japanese and international attitudes to genetic technology, showing that there is public and academic support for the use of government-funded genetic screening in Japan. A survey of Japanese genetic counselors was reported by Yasuko Shirai. The differences between client's response at genetic clinics in Japan and the USA, and the ethical background was discussed by Hiroko Kawashima. The situation and prospect of bioethics in Korea was summarised by Yung Sun Kang, and views from China were presented by Nianhu Sun.

This session was followed by a panel discussion on social, legal and ethical problems associated with the human genome project, chaired by Ei Matsunaga. These included a viewpoint of an information conveyer (Yoshizo Ohno), the viewpoint of an obstetrician/gynecologist (Shinryo Shinagawa), the perspective of a mother and a woman on genetic counseling (Makiko Osawa), views of a philosopher (Natuhiko Yosida), and a discussion of patenting human DNA (Kotaro Nawa). Following this there was some time for open discussion. Unfortunately there was not much formal time left for discussion of all of these issues, but informally many participants enjoyed the times to develop friendships while debating these issues.

The final session was a discussion of scientist's responsibility, chaired by Michio Okamoto. This session is particularly significant for Japanese scientists. A Japanese branch of the Universal Movement for Scientific Responsibility is to be established and this session included some background to this goal, and a message from the President of the Universal Movement for Scientific Responsibility (MURS), Jean Dausset. Marcel Mˇlan¨on presented a review of scientist's responsibilities in acquiring knowledge and developing intervention technologies with regard to the human genome, which was followed by a discussion of scientific responsibility by Nobel laureate D. Charleton Gajdusek who pointed out that new technology does not always provide us with cheap and better technology.

Closing remarks were made by Hiraku Takebe and Daniel Wikler, with a closing message from Wataru Mori. The seminar chairpersons attempted to create a "hybridoma" between science and humanity, for natural scientists who want to know the social consequences and social scientists who want to know the scientific progress.

The programme of the conference included a range of papers, from science to ethics. The proceedings will also be published in Japanese. At the seminar, one of the problems was the shortage of time given for speakers, especially on the second day. Because of this reason, authors were asked to bring allow longer manuscripts, and these were used in this book of the proceedings. The proceedings provide an international compilation of thoughts and research, to contribute to the ongoing discussion of these issues, which unfortunately are often limited to contributors from industrialised countries who are funding the science. All human beings will be affected, and the scientists should remember they are sequencing the shared DNA of all of humanity, and that they therefore have great responsibility to all peoples of the planet, for this and for future generations, consistent with the WHO goal of health for all. All people need to contribute their views to this discussion.

It was also apparent that the ability to argue rationally about bioethics is still to be developed in Japan, as in many countries. This means that future meetings are urgently needed to focus attention on these issues, and efforts are needed to make scientists better able to communicate their ideas. There was also a remark that because they were not experts they could not comment. In such thinking people seem to miss the whole point of bioethical discussion, it is multidisciplinary so that all people can partake in it. It requires only some basic knowledge of the issues, and the ability to discuss these issues in light of principles such as human autonomy, justice, beneficence and avoiding harm. All of us need to think about these issues, and to open our minds to the ideas of others. It is the responsibility of all people to join this discussion, because the consequences of the use of genetic information may change the expectations of health and life itself. Health involves more than physical and mental well-being, which is influenced by genes, it involves a spiritual side of life. We must ensure that genetic determinism does not cloud the real meaning of being human, and the real meaning of health, while ensuring all people benefit equally from the genetic technology that is being developed, to allow people worldwide to become more human not only as the result, but also in the means by which such benefits are shared.

Finally, we would like to thank the many people and organisations, some of whom are listed at the front of this book, who contributed to this conference and the people who made it possible to publish the proceedings rapidly. For help throughout the arrangement of the seminar and in the preparation of the proceedings we thank Ms Yoshimi Nakagawa. We would like to thank Mr. Isamu Yasuhara for his help in type-setting and printing arrangements. We hope that these papers will contribute to the discussion of the impact of human genome research on society.

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