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.
Eubios Ethics Institute 1994

Copyright 1994, Eubios Ethics Institute All commercial rights reserved. The copyrights for the contributions by Dr Angus Clarke, and by 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.

These files are only text-files, and contain no photographs. The figures in this book are not on-line, only legends are given, but the tables are on-line.

To Japanese book


vi: Editorial Preface and Summary /
ix: Fukui Statement on International Bioethics

1-11: 1. Opening addresses

1: Norio Fujiki (Human Genome Research Project ELSI Group Chairman)

Welcome addresses

2: Kanji Torizuka (President of Fukui Medical School)
3: Yukio Kurita (Governor of Fukui prefecture)
4: Yukio Ohtake (Mayor of Fukui City)

Congratulatory address
5:Masayuki Inoue (Director, Int. Scientific Affairs, Ministry of Education, Science & Culture)
Congratulatory messages

6: Federico Mayor (Director, UNESCO)
7: Hiroshi Nakajima (Director, WHO)
8: Victor Bulyzhenkov (WHO)
9: Kenichi Matsubara (Vice President, HUGO)
10: Walter Bodmer (Former President, HUGO)
11: Craig Venter (President, The Institute for Genomic Research)

2. Sociology and Intractable Neurological Disorders
(chaired by Itsuro Sobue & Victor A. McKusick)

12: Intractable neurological disorders and society / pp. 42-47: Discussion - Itsuro Sobue

13-14: Intractable diseases and Zen - Shosyu Kohzuki

15-18: Eugenics in modern history - Shohei Yonemoto

19-20: Socio-economic aspects of the care-system for incurable diseases - Koichi Emi

21-24: Conditions for community care required by patients and their families - Samon Ishikawa

25-34: Intractable neurological disorders, genetics & society: Some legal & ethical issues in Canada - Roxanne Mykitiuk

35-39: Genetic discrimination and behavioural genetics: The analysis of sexual orientation - Paul Billings

40-41: Thoughts concerning societal, legal and ethical ramifications of the genome project - Victor A. McKusick

3. Diagnosis and Counseling

(chaired by Hideo Sugita & Robert M. Cook-Deegan)

48: Diagnosis and counseling / pp. 93-98: Discussion - Hideo Sugita

49-52: Gangliosidoses - Yoshiyuki Suzuki

53-56: Molecular genetic diagnosis of muscular dystrophies - Kiichi Arahata

57-60: Heterogeneity of mitochondrial diseases - Ikuya Nonaka

61-64: Gaucher disease - Shoji Tsuji

65-69: Diagnosis and counseling of familial amyloidotic polyneuropathy (FAP) - Shukuro Araki

70-74: Geographical variations in amyloidosis death rate in Japan, 1969-1992 - Yoko Imaizumi

1-11: Diagnosis and counseling for Huntington's disease - Ichiro Kanazawa

77-80: Mortality rates for Huntington's disease in Japan, 1969-1992: geographical variations - Yoko Imaizumi

81-92: Ethical issues arising in the search for neurological disease genes - Robert M. Cook-Deegan

4. Social Acceptance and Consequences of Genetic Testing
(chaired by Kiyotaro Kondo & Robyn Y. Nishimi)

99-101: Genetic tests: bioethics and social acceptance / pp. 133-141: Discussion - Kiyotaro Kondo

102-105: The behavior-genetics debate in the United States - Michael Yesley

106-109: Restrictions on applied genetics but not on research - Knut Erik Tranoy

110-117: Social acceptance and consequences of genetic testing in Australasia and Asia - Darryl Macer

118-121: Health care systems for people with hereditary diseases and their families - Sawako Kawamura

122-124: The development of science and technology, and the health administration - Toshitaka Nakahara

125-127: Genetic screening for the prevention of common diseases - Hideo Hamaguchi

128-132: Biomedical ethics in U.S. public policy - Robyn Yuri Nishimi

5. Prevention and Therapy
(chaired by Fumimaro Takaku & Leslie A. Platt)

142-145: Home nursing service for patients with the incurable diseases - Yasuko Kinoshita

146-148: Legal aspects of treatment for disabled newborn babies - Noboru Ienaga

149-154: Development of new strategies for human gene therapy - Mahito Nakanishi

155-156: Gene therapy by means of liposomes - Kunio Yagi

157-160: Predictive testing in genetics and psychiatry: ethical issues in the use of advance directives - Daniel Wikler

161-164: The ethical framework and implications of Human Genome Research - Leslie A. Platt

165-171: Discussion

6. Genome Research and Scientific Responsibility
(A Joint Session with MURS Japan - chaired by Michio Okamoto & Jean Dausset)

172-174: Genome research and scientific responsibility - Michio Okamoto /
Welcome to MURS Japan - Jean Dausset /
p. 183 Discussion

175-178: Research on the human genome and patentability: The ethical consequences - Alain Pompidou

179-182: Science and ethics - Norio Fujisawa



7. International Attitudes to Genetic Technology and Disease
(chaired by Ishiwar C. Verma & Hiraku Takebe)

184-187: How rational are Indians in their views on handicaps and heredity? / pp. 243-248 Discussion - I.C. Verma et al.

188-191: Consensus survey on handicaps and heredity - Mikio Hirayama, Shigeaki Nakazaki & Norio Fujiki

192-194: The bioethical consciousness of Koreans - Yung Sun Kang & Chung Choo Lee

195-198: A survey of attitudes of people with higher education to genetics and diseases in Beijing - Wilson H.Y. Lo, Shaomei Han, Ju Zhang, Jasmine L. Lee

199-202: A survey of Thai Buddhist attitudes towards science and genetics - Pinit Ratanakul

203-209: Attitudes to diseases and therapy in Japan, Asia and the Pacific - Darryl Macer & Yuko Kato

210-213: Public attitudes to bioethical dilemmas in Russia - Vijay Kaushik & Darryl Macer

214-217: Israel's Ancient Tradition in the age of the new genetics - Frank J. Leavitt

218-221: Genetic testing of children - Angus Clarke

222-225: Advances in genetic testing and the meaning of genetic counseling: The perspectives of family members of patients with muscular dystrophy - Yasuko Shirai, Makiko Osawa & Yukio Fukuyama

226-234: Public perceptions of genetic counseling - Makiko Osawa, et al.

235-241: Human genetics and ethics education in the high school classroom - Karen Beck & Joann Bodurtha

242: Results of a survey to chairpersons of Ethics Committees of medical schools in Japan - Hiraku Takebe

8. Plenary Lectures
(chaired by Shiro Miwa)

249-254: Ethics, law and the "new" genetics: Selected aspects - Aubrey Milunsky

255-266: To know or not to know: that is the question (Paper) - Hans Galjaard

267: Flexibility in living organisms: A story in regeneration (abstract of public lecture) - Tokindo Okada

268-269: Discussion

9. Future Directions for International Research on Bioethics in Human Genome Research (chaired by Norio Fujiki & Darryl Macer)

270-275: Bioethics in Human Genome Research - Norio Fujiki

276-284: Genetic diseases and freedom of faith in life - Yasuo Kagawa

285-288: Post-modern bioethics and medical genetics - Hyakudai Sakamoto

289-291: New trends in the U.S. genome project and gene therapy - Kyohei Igarashi

292: Towards ethics, rooted in philosophy (abstract) - Tutomu Kuwaki

293-295: Toward international and cross-cultural bioethics - Masahiro Morioka

296-298: The future of international bioethics
Darryl Macer

299-310: Discussion /
Closing comments - Hiraku Takebe

312-6: List of Contributors, Organising Committee Members & Co-sponsoring Organisations

Cataloging-in-Publication data

Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993 / editors, Norio Fujiki and Darryl R.J. Macer.
Christchurch, N.Z. : Eubios Ethics Institute 1994.
Japanese language version ISBN 0-908897-07-3, published 1994.

1 v. Eighty-one papers. Includes index. ISBN 0-908897-06-5
1. Genomes--Research--International cooperation--Congresses. 2. Human gene mapping--Research--International Cooperation--Congresses. 3. Medical genetics--Social aspects--Congresses. 4. Medical genetics--Moral and ethical aspects. 5. Medical genetics--Congresses. 6. Bioethics--Congresses. 7. Human Genome Project--Congresses. 8. Public opinion. I. Fujiki, Norio, 1928- II. Macer, Darryl R.J. (Darryl Raymund Johnson), 1962- III. Eubios Ethics Institute. IV. Title (Intractable Neurological Disorders, Human Genome Research and Society).
341.76757 (174.9574)

Key Words: Bioethics, Biotechnology, Eugenics, Genetic Counseling, Genetic Engineering, Genetic Screening, Genetic Therapy, Human Genetic Disease, Human Genome Project (Scientific, Ethical, Social and Legal Aspects), Medical Ethics, Medical Genetics (Diagnosis, Treatment and Prevention), Patenting of Life, Public Perceptions of Genetic Disease, Public Perceptions of Genetic Counseling, Reproductive Technology.

Further copies can be obtained by ordering from the Eubios Ethics Institute,

To Eubios book list
To Fukui 1992 conference proceedings
To Eubios Ethics Institute home page