pp. vi-ix in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

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

Copyright 1994, 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 Preface and 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

January 1994

The Third International Bioethics Seminar in Fukui on Intractable Neurological Disorders, Human Genome Research and Society, was held at Fukui Chamber of Commerce and Industry Building, Fukui on November 19 - 21, 1993, as a satellite symposium of Human Genome Mapping '93 held in Kobe on November 14 - 17, 1993.

Since the First International Bioethics Seminar in Fukui 1987 on Human Dignity and Medicine, basic and applied genetic technology has greatly developed and numerous genes causing specific diseases have been identified. The International Association of Human Biologists - Japan Society of Human Genetics Joint Seminar on Medical Genetics and Society in Fukui 1990, and the Second International Bioethics Seminar in Fukui 1992 on Human Genome Research and Society, concentrated on the Ethical, Legal and Social Impact (ELSI) Issues on Human Genome Research.

The program of the last seminar included a wide range of papers from science to society, so that we decided to try to cover a more limited number of topics in this third seminar. The focus was on the intractable neurological disorders, such as Parkinson's disease and schizophrenia and others, which have genetic susceptibility with environmental risk factors and are recognized as polygenic disease, as well as diseases like Huntington's disease and progressive muscular dystrophy, which are recognised as monogenic diseases. Intractable neurological diseases raise a number of ELSI issues because of their intractability. The seminar still covered a broad range of issues that make us think of the impact of human genome research.

At the opening ceremony following the welcome addresses of President Torizuka of Fukui Medical School and Governor Kurita of Fukui Prefecture, we began with the congratulatory addresses of Dr Inoue of Monbasho, followed by congratulatory message of Dr. Mayor, Director General of UNESCO. It was followed by sessions on sociology and intractable neurological disorders (chairs, Sobue and McKusick), and diagnosis and counselling (chairs, Sugita and Cook-Deegan). The informative papers were accompanies by active discussion, as seen in this book. The first day covered topics ranging from Zen Buddhism, to homosexuality and eugenics. The methodology and sociology of research in behavioural genetics was explained, debated and criticised. After discussion and debate we all joined together to enjoy a display of local folk culture, and Japanese dishes at the reception party. There were further welcome and congratulatory messages from Mayor Ohtake of Fukui City, Vice President Matsubara of HUGO, Dr Nakijima, the Director-General of WHO, and Dr Bulyzenkov, of the Hereditary Disease Program of WHO, and Prof. Bodmer, former President of HUGO and Dr Venter, President of The Institute of Genomic Research.

On the second day, there were sessions on genetic testing and social acceptance (chairs, Kondo and Nishimi), and therapy and prevention (chairs, Takaku and Platt). These began with consideration of the social consequences in a range of different countries. The economic aspects may also be important in the chose of medical systems that are adopted, and attitudes people have to those suffering from disease. Later we discussed possible therapeutic approaches, including gene therapy. Topics including the philosophy of eugenics, and examples of nursing experience with sick patients were also covered.

During the first two days each of these four sessions had 6 multidisciplinary speakers and extensive discussion including comments and papers by the chairpersons. The ethical, legal and psychological, scientific and social issues were discussed. Simultaneous translation in English and Japanese was provided throughout the seminar to break down the language barriers. After these sessions, we had a joint session with the Japanese Branch of the Universal Movement of Scientific Responsibility (Japan MURS) with challenging addresses by Prof.'s Pompidou and Fujisawa, the vice presidents of MURS France and MURS Japan, respectively. This was chaired by the presidents of both of MURS Japan and France, Prof.'s Okamoto and Dausset. Finally we had a public lecture on the flexible nature of living organisms by Emeritus Professor Okada of Kyoto University, which the general public was deeply impressed with. An abstract of that address is included with these seminar proceedings.

On the third and last day, we had a workshop on genetics and bioethics in a global society. The first workshop (chairs, Takebe and Verma) reported on international bioethics survey projects being conducted in 1993 by the support of organisations, including WHO, the Japan ELSI Group of the Human Genome Research Project of the Ministry of Education, and Eubios Ethics Institute. These compared attitudes in many different countries around the world, including Australia, China, England, India, Israel, Japan, Korea, New Zealand, North America, Russia, Singapore and Thailand. Previous complementary survey projects have also been underway for several years in India, Japan and Thailand on heredity and the handicapped. The topics covered various issues of bioethics, biotechnology, medical genetics and attitudes to the environment. The questionnaires are available if other countries are interested in conducting such research. In order to develop cross-cultural ethics, we have to examine the reasoning that people have. Academics and physicians are too often distant from the reasoning of ordinary people, so such a survey is a useful addition to the instruments that are available to examine international bioethics.

After the first workshop, we had the plenary lecture of Prof. Milunsky from Boston University. Unfortunately, Prof. Galjaard was unable to join us due to sickness, but his review paper is included in these proceedings. In the afternoon we had the final workshop session (chairs, Fujiki and Macer, of the UNESCO International Bioethics Committee) continuing consideration on future directions for international research on bioethics in human genome research. We were able to develop a seminar statement that reflects much of the spirit of the seminar. We hope that the statement will be adopted in bioethics discussion around the world, to look beyond our own cultures and broaden our perspectives of health. Our seminar closed with remarks by Prof. Takebe of the HUGO Ethics Committee. We will all continue to think on these topics, and we invite your comments.

As editors, we wish to thank all those who contributed to the organisation of the seminar, in particular Dr Mikio Hirayama, Ms Yoshimi Nakagawa and the Fukui Medical School Organising Committee. A list of members, and the generous financial contributors to the seminar, is at the end of the book. The publication of these books, in English and Japanese, was made possible by a grant from the ELSI group of the Human Genome Research Project of the Ministry of Education, Science and Culture, of Japan. We would especially like to thank the essential contributions of the interpreters, Dr Richard Clark, Ms Kazumi Inagaki, and Dr Mayumi Masuko. The Japanese translation of almost all English papers was done by Ms Kazumi Inagaki, to whom very special thanks are due. We also thank Mrs Nobuko Macer for her assistance with translation and editing, and critical reading of the text. We would like to thank Mr. Isamu Yasuhara for his help in type-setting and printing arrangements.

In this seminar we looked at policy, concerning questions like: What is a disease and what is not? Where do we draw the line between therapy and enhancement? What are intractable neurological disorders and what is merely failing to meet the expectations of society or ourselves? What will the impact of human genome research be and can we develop international policy? By the publication of these proceedings two months after the seminar we sincerely hope that the spirit of active cross-cultural discussion generated in the seminar will continue, and not be lost. Above all, we dedicate this book to those in our society who cope with intractable diseases, both patients and families. We hope that all can learn from them and wisely help build a more tolerant global society, ready to face the dilemmas genetics brings us, and ready to explore all possible therapies.

Fukui Statement on International Bioethics*

1. Bioethics should be viewed as an interdisciplinary field, not limited to any academic speciality, and including debate among all people, i.e. not only academics.

2. International cross-cultural bioethics should be developed, including studies and discussions, which respect individual cultures as long as they do not conflict with fundamental human rights, as outlined in the United Nations Declaration of Human Rights.

3. The methodology of bioethics should aim for cross-cultural understanding. Such understanding is necessary to develop international cross-cultural bioethics.

4. Harmonisation of some international laws, guidelines and policies to restrict bioethical "tourism" (e.g. resource-able persons buying organs from the poor; buying the products of genetic technology for enhancement purposes; or using only the poor for medical experiments) is important. The human body (DNA, genes, cells, tissues or organs) should not be exploited as a source of profit.

5. Research on the thinking and reasoning of ordinary people should be more emphasised in order to understand the diversity of people's thinking. This is necessary for determining the degree of universality that is possible, and should be used to complement other research approaches in bioethics.

6. The life and medical sciences, especially human genome research and the application of genetic screening and gene therapy, present some important educational, ethical, legal and social issues which need to be considered at local, national and international levels.

7. Somatic cell gene therapy for treatment of disease is a useful medical therapy and should be used when needed and chosen by patients. However, germ-line gene therapy should not proceed until it is both technically safe, and a truly international public consensus has been sought. To achieve such a consensus first requires education which will take several decades in most parts of the world.

8. In order to achieve the above goals greater effort is required to educate all members of society about the scientific and clinical background, and the ethical principles and social and legal problems involved, in the life and medical sciences. This will enable the active collaboration of all individual members of society, many academic disciplines, and the international community.

* We encourage the free duplication and circulation of this statement. To stimulate international discussion, comments on this statement will be published in the Eubios Journal of Asian and International Bioethics, send them to Dr. Darryl Macer, Editor, EJAIB, P.O. Box 125, Tsukuba Science City, Ibaraki 305, JAPAN.

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