Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
This volume includes over a hundred papers that were presented at two meetings, the UNESCO Asian Bioethics Conference (ABC) and WHO Assisted Satellite Symposium on Medical Genetic Services and Bioethics, held during Nov. 4-8, 1997 in Kobe and Fukui. The short-title, Bioethics in Asia, is symbolic in the sense that this was the largest bioethics meeting to be held in Asia, although many of the papers are global in perspective. We hope that this collection of papers will further stimulate the development of bioethics in Asia, and also inform readers in the global community of the depth and breadth of work conducted in Asia in the field of bioethics.
These papers reveal the growth in research in bioethics in the Asian region, and the meetings saw 70 foreign and about 200 Japanese researchers involved in extensive discussion of issues facing Asia today. In addition to the formal papers there was intense discussion as recorded in these proceedings. The meetings follow the tradition of the five previous International Bioethics Seminars in Fukui held since 1987 which have discussed the ethical, legal and social impact (ELSI) issues of human genetics, and have worked at promoting human dignity with sciences and technology. As in previous meetings, not only medical and biological scientists, but also social, legal and ethical experts, policy-makers and the general public joined together.
This time, during 4-7 November 1998 in Kobe, where they have recently recovered from the terrible earth-quake two years previous, the UNESCO ABC saw scholars from 32 countries from all over the world attend. Following the welcome reception on the evening of the 3rd the Opening Ceremony, chaired by Kuroda (former Japanese Ambassador to UNESCO) saw two plenary lectures by Mori (Cabinet Council of Science and Technology) and Shapiro (Rapporteur of IBC, UNESCO). One of the centres of the ABC was the work of the UNESCO IBC, the Universal Declaration of Human Genome and Rights, which passed the general assembly of UNESCO at the same time in Paris. The Declaration aims to clarify that the human genome is the common heritage of humankind, and the solidarity of scientific knowledge and human dignity. Then, we have divided into the following seven sessions.
In Session I, Law and Ethics discussed a variety of legal issues related to genome research including protection against genetic discrimination and privacy, together with the social consequences of biomedical sciences in reproductive, genetic and brain sciences, and international regulations. There were speakers from Switzerland, USA, France, Spain, Croatia, and Japan.
In Session II, the Foundations of Asian Bioethics were explored in a session with special interest to the Asian Bioethics Association (ABA). During the course of the ABC the General Assembly of the East Asian Bioethics Association approved the broadening of the Association to the ABA effective immediately. The session had speakers from Malaysia, India, Nepal, Japan, China, Germany, and Thailand. The question of how approaches were similar between countries and to Western bioethics was explored, for example, the concept of eugenics in China, and cultural integrity in different countries. Session III on Health and Asian Ethics continued this focus on Asia, with papers on medical care with papers from Philippines, Hawaii, India, China and Thailand. It included issues like cancer notification, terminal care, application of biotechnology, clinical trials, AIDS and cultural diversity.
Session IV considered International Education of Bioethics within the international community, medical genetics, medical school, high schools with speakers from Belgium, Japan, and Portugal. A number of practical experiences were discussed, methods for teaching bioethics and for encouraging teachers of ethics. The role of ethics committees was also discussed, and the move for internationalization of bioethics.
Session V considered Population and Environment with papers on reproductive health and fertility regulation, assisted reproductive technology and sex selection with papers from Bangladesh, China, New Zealand, and Korea. Environmental contamination caused by textile industry in India was also discussed. There are also several posters included on this important theme, as well as other topics in bioethics.
Session VI considered Ethical Issues of Human Genome Projects, discussing the application of human genome projects and human genome diversity projects. This included cross-cultural ideas on informed consent, agreement, feedback of interests and results, and confidentiality of genetic information especially in population genetic studies, with papers from Columbia, Philippines, India, Canada, USA, and Japan. Ethnic communities were considered in rural and urban settings. Session VII was on Ethics of Medical Genetics, including some discussion of the WHO guidelines, respect of individual and social selection in genetic screening, health resources and public education for health for all. This discussion continued onto the WHO Assisted Satellite Symposium on Nov. 8. In Kobe there were speakers on this theme from Japan, Germany, USA, UK, India. Session VIII was on Gene Therapy with papers on both the present situations of gene therapy and its background in Russia, Holland, Israel and Japan; as well as discussion of theoretical aspects of future applications.
The Closing Ceremony was chaired by Shapiro, and followed the conference dinner on the night of the 6th. We had two plenary lectures, one on Bioethics in Science and Technology (Okamoto, President of ABC '97) and one on Bioethics faced by the Editor of a Science Journal (Ivinson, Editor of Nature Medicine). The closing session saw several closing addresses from different perspectives, attempting to draw an overview of the meeting.
Almost all participants then moved immediately to Fukui, appreciating the beautiful autumn maple scenes on the Hokuriku Highways and the traditional culture of handmade paper in Imadate, and Zen experiences in Eiheiji Temple, and they stayed in Fukui for one night. The WHO Assisted Satellite Symposium on Medical Genetic Services and Bioethics in Fukui was held on 8th November.
We started with opening remarks by Sudo (President, Fukui Medical University), under the chairmanship of Fujiki (Expert Advisory Panel Member of HDP, WHO) followed by a plenary lecture on the Control of Hereditary Diseases by Boulyjhenkov (Human Genetics Programme, WHO), using WHO TRS. #865. Boulyjhenkov emphasized the progress of human genome projects and its application, such as diagnosis, prevention and control of hereditary diseases as well as genetics testing, genetic susceptibility and social understanding. Another plenary lecture on Ethical Guidelines of Genetic Services, by Wertz (Shriver Center for Mental Retardation), emphasized the place of non-directive counseling, autonomous decision making, informed consent, and confidentiality in the evolution of the proposed WHO guideline document, especially respect of decision making following selective abortion.
The first panel looked at the Present Situation of Genetic Services in Different Countries chaired by Verma, including seven members from UK, Russia, USA, Germany, Hungry, and Japan, while the second panel was on the International Consensus Survey on Heredity and Handicapped, chaired by Fujiki, among four members from India, Korea, Thai and Japan, emphasizing the importance of cultural and social consequences and public education.
During the afternoon nine Japanese commentators and five foreign ones, from Israel, UK, India and Belgium discussed medical genetic services and the WHO guidelines. The issues included covered a wide range including mass media, genetic counseling, reproductive technology, preimplantation and DNA diagnosis, cancer susceptibility, prenatal and presymptomatic diagnosis, patients and parents associations, public perception and legal regulation for genetic applications, for safety and effective health cares. The chairpersons Matsuda, Takebe, and Macer emphasized the public debates on ethical concepts of medical genetic services as well as public education.
Boulyjhenkov, Byk and Fujiki made farewell remarks on this satellite symposium, which expanded the concepts of bioethics in different countries, especially in Asian countries, where there are various backgrounds of religion and culture. The meetings emphasized the importance of public awareness and debate. The WHO Working Group Discussion was continued in Geneva on December 1997. It extended such bioethical debate on each specialized ELSI problem to all continents, as mentioned in UNESCO Universal Declaration of Human Genome and Rights, though there is much further bioethical follow up study needed by UNESCO IBC.
These meetings were held under the auspices of MURS Japan (Okamoto), and were also the Second Congress of the Asian Bioethics Association (Sakamoto) and the Sixth International Bioethics Seminar in Fukui (Fujiki). We especially thank all the supporters of the meetings, which were coordinated with the International Bioethics Committee of UNESCO, and the Human Genetics Programme of WHO (Boulyjhenkov), as well as Fukui Medical University (Sudo). They were also cosponsored by UNESCO (Mayor), WHO (Nakajima), CIOMS (Bryant), Ministry of Education, Science, Culture and Sports of Japan (Iwamoto), National Science Foundation of USA (Murphy), French Embassy in Japan (Ouvries), MURS Japan (Okamoto), Eubios Ethics Institute (Macer), Nature Japan (Swinbanks), Fukui Prefectural Government (Kurita), Fukui Municipal Government (Sakai), as well as Fukui International Association (Yagi), and the Fukui Convention Bureau (Kurokawa).
The Secretary General of ABC'97 was N. Fujiki, Emeritus Professor, Department of Internal Medicine, Fukui Medical University, Matsuokacho, 910-1104, Fukui Prefecture, Japan, who gratefully acknowledges the support of the Medical University, especially Prof. M. Kuriyama, Dr. M. Hirayama and Ms. Y. Nakagawa. The Publication and Interpretation Office was Eubios Ethics Institute, from where further copies of this volume can be ordered, and the text of the proceedings can be viewed on Internet <http://eubios.info/ ABCE.html> The Japanese proceedings will also be published shortly. We would especially like to thank the dedicated translators and interpreters that made this international dialogue possible, Dr. T. Boyle, Dr. R. Clark, Mrs. K. Inagaki, Dr. M. Masuko. We also thank Mrs. N.Y. Macer for her assistance with interpretation, translation and editorial assistance.
At the end of this preface we want to encourage all those who participated so actively to revisit the discussions and invite others to share in attempts to answer the many questions raised. Only a few papers are missing from this volume because they were not sent, but with more than a hundred papers in one volume it is perhaps the largest collection of bioethics work to flow out of Asia. This is symbolic because the flow has often been into Asia, but with these papers we hope that the trend will be to work together to make more responsible scientists and a participatory public.
Fukui Medical University and Toyobo Tsuruga Gene Analysis Laboratory
University of Tsukuba and Eubios Ethics Institute
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