pp. 1-11 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. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Opening address

Norio Fujiki
Chairman, Program Committee; Professor, Fukui Medical School, JAPAN

Your excellency, members of HUGO, distinguished guests, ladies and gentlemen: May I, as chairman of the ELSI Group of the Ministry of Education, Science and Culture Human Genome Research Project, and of the Program Committee, welcome all of you as participants to the Third International Bioethics Seminar in Fukui. This is part of the general program on Human Genome Research, initiated by the ELSI Group in 1991, and a continuation of the meetings held in Fukui in 1987, 1990 and 1992. That is the First International Bioethics Seminar in Fukui 1987 on Human Dignity and Medicine, the International Association of Human Biologists - Japan Society of Human Genetics Joint Symposium in 1990 on Medical Genetics and Society, and the Second International Bioethics Seminar in Fukui 1992 on Human Genome Research and Society.

It is clear that the further advances resulting from Human Genome Research will make it possible for all monogenic diseases to be traced to specific chromosomal locations within the next few years. This knowledge will help in the development of treatment and prevention. It will also enable predictive diagnosis of an increasing number of genetic diseases of late onset, and in future, may allow the identification of individuals at high risk for common diseases of middle life, that can be prevented or alleviated by diet, drugs or healthier life styles. At a later date, Human Genome Research is likely to provide further insight into gene regulation, including understanding of fetal development and abnormalities.

On this occasion we are drawing particular attention to intractable neurological disorders as they are intimately concerned with work on Human Genome Mapping, which is a central part of Human Genome Research. This work has already contributed greatly to the advancement of biomedical science, but has also been unprecedented in its impact upon future human society.

This seminar should make many important contributions to our society, not only concerning monogenic diseases, such as progressive muscular dystrophy, and mitochondrial diseases, but also such polygenic diseases as diabetes, heart infarction and schizophrenia, which have both genetic and environmental risk factors.

I do not need to repeat how important are this seminar, and the discussion in general of progress in medical genetics, including the ethical, legal and social issues involved in Human Genome Research nor how gene mapping, genetic screening and gene therapy will affect individual freedom vis-a-vis the rights of society, this being one of many issues that may arise, be discussed and answered during this seminar, especially as it relates to intractable neurological disorders.

Finally, may I take this opportunity to express my sincere thanks to Prof. Kenichi Matsubara, President of HUGO Pacific, Prof. Shiro Miwa, President of the Japan Society of Human Genetics, Prof. Kazumasa Hoshino, President of the Japan Association of Bioethics, to the Ministry of Education, Fukui Medical School and to the many others who have brought this seminar to realisation so effectively.

Now, the Third International Bioethics Seminar in Fukui is open.

Welcome Address

Kanji Torizuka,
Chairman, Organising Committee, President, Fukui Medical School, JAPAN

On behalf of the Organising Committee, it is our great pleasure to extend you a cordial welcome to the Third International Bioethics Seminar in Fukui, being held here in Fukui from today the 19th to the 21st of November 1993. These dates were decided on because many famous molecular and human geneticists are visiting Japan from all over the world to attend the Human Genome Mapping '93 Conference which has just been held in Kobe from November 14-17.

Although the sessions are to be concerned mainly with intractable neurological diseases, the approach of our seminar is of an interdisciplinary nature and will cover not only clinical medicine but also the fields of the basic medical sciences, as well as the social sciences. Hence we have limited the number of topics, focusing on such intractable neurological disorders as Parkinson's disease, Huntington's disease and polygenetic diseases which involve genetic susceptibility interacting with environmental risk factors. Progressive muscular dystrophy and mitochondrial diseases, which are recognized to be monogenic, will also be discussed.

It is our sincere desire that this seminar will provide an ideal setting for meeting new friends with common interests in these fields or in various other fields related to medical research.

We expect that our discussions will be especially rewarding and fruitful in terms of contribution to research in the fields of human health, and we will try to provide all participants with meaningful insights into Japan's unique culture and tradition, such as Zen Buddhism at the Eiheiji Temple and Japanese hand-made paper, Tesuki Washi.

We are delighted to see you here in Fukui.

Welcome Address

Yukio Kurita
Governor of Fukui Prefecture, JAPAN

On the opening ceremony of this Third International Bioethics Seminar in Fukui 1993, I would like to congratulate you for attending this seminar. Many famous experts from all over the world and various parts of Japan are gathering here, and I would like to welcome you on behalf of our prefectural people.

In 1987, the First International Bioethics Seminar was held here in Fukui and six years have already passed. During these periods, the progress of sciences and technologies in the areas of medical sciences rapidly developed. On the other hand, very sophisticated technology has been applied to the clinical sciences and has influenced the human life and ethical values of the people.

Under such circumstances, this time, we are going to discuss the measures designed to promote biotechnology and sciences, respecting the life and the dignity of human beings, and to discuss the ethical, legal and social issues, not only from the views of basic and clinical medicine, but also of philosophical, sociological, economic, legal, and religious standpoints. I think that this will be very significant for the thinking processes of bioethics in the future.

In Fukui prefecture, the society has matured responding to the diversification of the values in changes of social environments and disease patterns according with the increase of aged population. And we have incorporated to the prefectural policy theme of realization of social welfare with health and worth. We are aiming at improving the vitality and comfort; at making a wealthier society in Fukui and expecting a great deal that this seminar will provide the clear, excellent direction for the 21st Century.

Lastly, Fukui prefecture has such nice places as Echizen Seashore, and Wakasa Bay area, with historical and beautiful sights, which you may enjoy. I would like to conclude my welcome address by wishing you the very success of this seminar and further research, activities, and health of yourselves. Thank you for your attention.

Welcome address

Yukio Ohtake
Mayor of Fukui City, JAPAN

On behalf of Fukui city, I would like to welcome you. Today we open the Third International Bioethics Seminar in Fukui, greeting Human Genome Project researchers from all over the world, including such diverse countries as China, New Zealand, Norway, and America.

This Seminar is being held as part of the Human Genome Project of the Ministry of Education which is attempting to analyse human genetic information. This is the third time a Bioethics Seminar has been held in Fukui.

Last year debate was focused on the ethical, legal, social issues arising from human genome research. This time I've heard that the discussion is concentrating on multifactorial diseases such as Parkinson's Disease, and single gene diseases such as muscular dystrophy or mitochondrial disease.

I hope very much that this seminar will be easily understood by ordinary people. There are topics that cannot be avoided in future life science research.

Our city of Fukui is known as a place where you can experience all four seasons. I would be very happy if you take this opportunity and can enjoy to the full the atmosphere and feeling of Fukui, walking around places such as the remains of the Ichijodani Asakura Family Mansion and Daianzengi, which played an important role in Japanese history; Asuwayama Park which is beautiful with autumn leaves now; and the Echizen Seashore which looks out on the tempestuous early winter Sea of Japan.

I would like to close my words of greeting by expressing my deep respect to Dean Torizuka of Fukui Medical School and those other people who have worked so hard to organise this conference. I wish the conference every success.

Congratulatory Address

Masayuki Inoue
Director, International Scientific Affairs Division, Ministry of Education, Science and Culture, JAPAN

Mr.President, Distinguished Guests, Ladies and Gentlemen,

It is a great pleasure and privilege for me to attend this opening ceremony of the Third International Bioethics Seminar in Fukui "Intractable Neurological Disorders, Human Genome Research and Society" and to say a few words on behalf of the Ministry of Education, Science and Culture, Monbusho.

I should like, first, to express our appreciation to the organisers from Fukui Medical School for the successful organisation of this Seminar. I should also like to extend our hearty welcome to all participants, and particularly to those scientists who have come a long way to Japan. I believe this Seminar is an important initiative of Fukui Medical School to address international issues important for human beings as a whole, the scientific and ethical questions of human genome research, in cooperation with groups of experts from various fields from humanities and social sciences to natural sciences.

The impact of the human genome research will raise many ethical, legal and social issues, and may change society. In fact, some significant issues are being witnessed. We appreciate again Fukui Medical School for its foresight to organise international seminars preceding the present one; the first one in 1987 and the second in 1992. These seminars have laid a solid foundation for the present one.

The issue of human genome research and society is an outstanding question that is being undertaken by the United Nations and its specialized agencies such as WHO and UNESCO as well as by scientific circles or groups of researchers. This Seminar, I believe, is a valuable addition and contribution to the whole movement in this area and the development of international deliberation in various fora. This constitutes the background of this Seminar.

UNESCO, to whose activities Monbusho attaches importance, has recently established the International Bioethics Committee in order to consider issues related to protection of the human genome. Professor Fujiki, a leading figure of the Organising Committee of the Seminar, has been appointed by the Director-General of UNESCO as a member of the Committee. I hope that cooperation between UNESCO and Japan will be further developed in this area through various activities like this Seminar.

Among the issues on human genome, I recognize the significance of education and information to enhance public awareness. For this, I understand, the preceding seminar published its proceedings in English and Japanese for wider dissemination, and the present Seminar will have a discussion open to the public on the last day. I really appreciate the initiative of the organisers.

In concluding my speech, I should like to show deep respect to President Torizuka, Professor Fujiki and his colleagues of Fukui Medical School who have worked very hard to organise this Seminar and also wish all the participants a very successful seminar. Thank you very much.

Congratulatory Message

Federico Mayor
Director-General, UNESCO, Paris, FRANCE

Mr. President, Ladies and Gentlemen, As Director-General of UNESCO, I wish to greet all the distinguished participants in the Third International Bioethics Seminar in Fukui. I am very grateful to Prof. Fujiki, Vice-President of the International Committee of Bioethics, for agreeing to read this message on my behalf.

UNESCO's interest in bioethics dates back to the 1970s when the era of genetic engineering began. It is involved in this domain because its main areas of concern-education, science and culture - correspond to the essential terms of the bioethical debate. It is part of the organisation's role as an international organisation to involve all countries and all cultures in this vital process of reflection. It is indeed only through international co-operation and consultation that the ethical issues raised by modern genetics-encompassing but transcending universally recognized human rights principles - can be effectively addressed.

It was with these considerations in mind that UNESCO took the decision to establish the International Bioethics Committee. This Committee, comprising some 50 eminent personalities in the field of biology, genetics, medicine, law, philosophy and the social sciences, met for the first time at UNESCO Headquarters from 15-16 September 1993 with the purpose of identifying some important basic principles corresponding to the main ethical concerns to which the life sciences give rise.

The International Bioethics Committee is intended, in the first place, as a forum for the exchange of ideas and for the information of the general public. It will endeavour to foster a dialogue between specialists and decision-makers conducive to such practical measures as may be deemed necessary.

The International Bioethics Committee proposed the following four topics for its next session, to be held from 20 to 22 September 1994:
-The status of knowledge in genetics
-Population genetics, development and demography
-Therapeutic applications of research in genetics, with due regard to the diversity of cultures and the differences in level of development
-Mass detection via genetics and individual genetic tests. Freedom or constraint?

Genetics has become a matter of concern to everyone and not simply to specialists. The next session of the International Bioethics Committee is therefore also invited to examine the form and content of a possible international instrument for the protection of the human genome. New types of legal instruments must be devised to take account of new realities and new responsibilities in this domain, having particular regard to the irreversibility of changes that may be introduced to the detriment of the human race as a whole. Yet, international instruments, however well conceived, are not sufficient by themselves. Parallel action must also be taken to increase public awareness, notably through education, training and information.

UNESCO will continue to do everything possible to contribute to international co-operation in the sphere of bioethics, and it wishes your international seminar every success in its deliberations.

Congratulatory Message

Hiroshi Nakajima
Director-General, World Health Organisation, Geneva, SWITZERLAND

It is my great privilege and pleasure to convey this message to the participants in the Third International Bioethics Seminar, which is devoted to the problems of intractable neurological disorders, human genome research, and society.

Considerable progress has been made in gene mapping in conjunction with the International Human Genome Project. As a result, new genetic knowledge will dramatically increase the call for genetic approaches to the control of a wide spectrum of diseases especially intractable ones. It is expected that the medical application of this knowledge will enable early diagnoses of predisposition to common diseases such as cardiovascular diseases, diabetes, some forms of cancer and mental and neurological disorders, all of which are of major public health importance. Prevention and treatment of such diseases will thus be possible through changes in life-style, diet modification, and periodic medical examinations, or by the administration of gene therapy. Furthermore, with the introduction of new DNA technology, improved drugs and vaccines can now be made available to help control the various diseases.

Bearing in mind the objective of WHO - the attainment by all people of the highest possible level of health - as well as its function as the directing and coordinating authority on international health work, the Member States look to WHO for advice on health policies and technical and ethical standards. In this context, genetic approaches to the prevention and control of various diseases and to health improvement will most probably emerge as one of the major strategies for the enhancement of health and thus for achieving health for all. To this end, international discussions such as this Seminar are very timely and useful.

Thus, I am hopeful that the outcome of this Seminar, which will consider very important medical, social and ethical issues related to the application of the impressive advances in molecular genetics research, will provide guidance for the development of preventive health strategies. I congratulate the Organising Committee on its accomplishment, and wish you a most successful meeting.

Congratulatory Message

Victor Bulyzhenkov
Director, Hereditary Diseases Programme, World Health Organisation, SWTIZERLAND

Distinguished Guests, Ladies and Gentlemen, It is a great pleasure for me on behalf of the Hereditary Diseases Programme of the World Health Organisation to welcome all of you attending the Third International Bioethics Seminar concerned with human genome research, neurological disorders and society.

Rapid advances in gene mapping in the International Human Genome Project make it almost certain that the majority of genes will be localized within the next few years, and therefore the number of monogenic disorders which could be definitively diagnosed will increase. Genetic technology may also be applicable for identifying people with genetic risk factors for the common diseases that now cause 60% of morbidity and mortality in adults. It is proposed that the application of new genetic knowledge will provide possibilities for the diagnosis and treatment of a wide spectrum of diseases including communicable and noncommunicable ones, as well as to reveal the predisposition before the appearance of the disease.

However, the medical application concerned with improving genetic-testing techniques obtained from the Human Genome Project raises social and ethical issues which evolve faster than advances in treatment. The ethical issues raised by the Human Genome Project are not linked with the technology itself but with its proper use. Scientific, medical and lay communities should ensure that information and technology will be used to preserve the dignity of the individual. One of the ways to avoid the misuse of information is to convene discussions at different levels (professionals, policymakers, mass-media, schools, etc.) in order to establish firm understanding of actual and potential applications of the Human Genome Project.

In this connection I fully support the initiative of the Fukui Medical School in the convening of a number of excellent Seminars concentrating on global problems such as genetics, medicine and society. I am confident that discussion at this seminar will also be very fruitful and productive and I wish you every success in your deliberations.

Congratulatory Message

Kenichi Matsubara
Vice President, Human Genome Organisation; Director, HUGO Pacific Office

It is my great pleasure and honour, as Director of the HUGO Pacific office, and as a coordinator of Human Genome Research in Japan to welcome you all to the Bioethics Seminar in Fukui.

This seminar was organised to bring together a broad spectrum of prominent people to discuss the ethical issues that will arise as the Human Genome Project develops. Many academics, including members of HUGO and the ELSI group on Human Genome Research, as well as members of Japanese academia, including biologists, medical scientists and bioethicists from a variety of fields including sociology, psychology, ethics, law and economics have gathered here. I am convinced of the need for thoughtful deliberation of the effects brought about by the progress in the Human Genome Project.

Although I am very interested in and would like to take part in this important seminar, my commitments to Human Genome Mapping '93 in Kobe, which I have presided over until 17th of this month unfortunately precludes my participation. Therefore, I have asked the Chairman of this seminar, Prof. Fujiki to convey my welcome to you all.

This seminar owes much to the great efforts by its organiser and the chairman, Professor Fujiki. Topics covered in the seminar are expected to range over wide areas including clinical applications of the Human Genome Project in the diagnoses, treatment and prevention of intractable disorders, and the expected impacts on society. The discussion will cover our scientific responsibility to the whole human race and surrounding environment.

I hope that this seminar will bring about rich and rewarding experiences for all of us in science, and help develop friendships. Let us greet old friends and make new ones, in this atmosphere of traditional Japanese culture. Once again, I welcome you to Fukui, and have a good time.

Congratulatory Message

Walter Bodmer
Former President, HUGO; Director-General, Imperial Cancer Research Fund, U.K.

It was a pleasure to be invited to contribute to the Third International Bioethics Seminar on the ethical, legal and social issues arising from human genome research and I am extremely sorry that my previous commitments have prevented me from attending in person.

Although I believe that the work of mapping and sequencing the human genome itself raises few, if any, ethical and social questions, such questions do arise as soon as the results of the Human Genome Project start to be applied within society. Questions of consent in relation to genetic testing, of access to personal genetic information and of the use of genetic information in the context of employment and insurance, are obvious examples. These and other issues need very careful consideration to find answers that are acceptable both nationally and internationally.

The two previous International Bioethics Seminars in Fukui have already contributed substantially to the on-going discussion of these extremely complex matters and I am sure that the excellent programme you have prepared for this third success and I will look forward with interest to reading an account of the proceedings in due course.

Congratulatory Message

Craig Venter
President, The Institute for Genomic Research, Maryland, USA

It is an honour to have been invited to address this meeting, and I regret that a schedule conflict prevented me from doing so in person.

Modern genomic science and biotechnology have led to the birth of a new era in human history. I have called it the Genome Era. Knowledge of the human, animal and plant genomes will give humanity the power not only to prevent and cure crippling diseases and other disorders but to alter what we all "nature" in ways that are at once more congenial to humanity and less harmful if not actually more congenial to nature itself.

It has been said that life for most people in history has been brutish, nasty and short. It is still so for all too many. Progress has justly been measured by the increase in individual dignity and well-being that developments in science and technology have made possible. But this progress has been accompanied, as we know all too well, by a human capacity for reckless, ignorant and depraved behaviour which, armed with the tools of "progress" has caused frightful damage.

We must not let that happen in the Genome Era. We must raise the critical issues and deal with them in open ways. but above all, we must not let ignorance and blind fear of science hinder, as it already has to some extent, the use of this great new body of information for the welfare of humanity.

I offer my best wishes for a successful seminar.

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