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.
Eubios Ethics Institute 1992

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.

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 numbers in the tables are on-line.

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vi: List of Organising Committee Members & Co-sponsoring Organisations

viii: Editorial summary

1-7 1. Opening addresses
(chair Norio Fujiki)
1: Opening address - Kanji Torizuka (President of Fukui Medical School)
2: Welcome address - Yukio Kurita (Governor of Fukui prefecture)
3: Welcome address - Yukio Ohtake (Mayor of Fukui City)
4: Congratulatory address - Victor Bulyzhenkov (WHO)
5: Congratulatory address - Federico Mayor (UNESCO-message)
6: Congratulatory address - Hiroshi Nakajima (WHO-message)
7: Congratulatory address - Zbigniew Bankowski (CIOMS-message)

8-17 2. Human genome research
8: (chair George Cohen)
9: Human genome research - Santiago Grisola (message)
11: On the analysis of the human genome and the Human Genome Project - Kenichi Matsubara

18-32 3. Present status of human genome research in Japan
18: (chair Itaru Watanabe)
19-23: Physical mapping of chromosome 21 - Yoshiyuki Sakaki
24: Discussion
25-27: Human genome research in immunology - Tasuku Honjo & Fumihiko Matsuda
28: Discussion

33 4. Historical background on bioethics in medical genetics / pp. 50-52: Discussion
(chair Kazumasa Hoshino)
34-45: The bioethics process in the United States of America: who decides? - Michael Yesley
46-49: Historical background on bioethics in medical genetics in Japan - Kiyoshi Aoki

53-55: 5. Clinical applications of medical genetics / pp. 83-84: Discussion
(chair Fumimaro Takaku)
56-63: Genomic imprinting and its relevance to the occurrence of genetic diseases - Norio Niikawa
64-71: Characterization of germ-line mutations of the APC gene: application to presymptomatic diagnosis - Isamu Nishisho
72-75: New advances in prenatal diagnosis: implications of preimplantation diagnosis of genetic disease - Kaoru Suzumori
76-78: Genetic counseling and informed consent - Hiraku Takebe
79-82: Mapping the human Y chromosome - Yasuo Nakagome

85: 6. Social issues in medical genetics / pp. 118 Discussion
(chair Keiko Nakamura)
86-87: Human genome analysis and human rights - Tadami Chizuka
88-89: Human rights and medical genetics - Takashi Tachibana
90-92: New age of genetic tests is coming - Kenji Makino
93-95: ELSI in human genome research - Asao Fujiyama
96-97: Social problems of human genetic research - a historical perspective - Shohei Yonemoto
98-104: Medical genetics, social issues, and the genome programme - Derrek F. Roberts
105-113: Neo-eugenics and disability rights in philosophical perspective - Daniel Wikler & Eileen Palmer 105
114-117: International aspects of genetic discrimination - Paul Billings

119: 7. International opinion / pp. 163-165: Discussion
(chair Norio Fujiki)
120-137: Japanese attitudes to genetic technology: National and international comparisons. Public and academic support for the use of government-funded genetic screening in Japan - Darryl Macer
138-144: Ethical considerations in genetic counseling - Yasuko Shirai, Makiko Osawa & Yukio Fukuyama
145-146: Different client's response at genetic clinics in Japan and the USA, and its ethical background - Hiroko Kawashima
147-148: Situation and prospect of bioethics in Korea - Yung Sun Kang
149-151: The urgent problem in China - Nianhu Sun
152-159: A preliminary report on an opinion survey on the handicapped and heredity in Thailand - Pinit Ratanakul
160-162: The common people's viewpoint on handicaps and hereditary - Ishiwar C. Verma, Norio Fujiki, R.K. Marvah, Y.R. Ahuja, Krishna C. Malhotra, Aparna P. Parikh and S. Sharma

166-167: 8. Panel discussion on social, legal and ethical problems associated with the Human Genome Project / pp. 184-193: Discussion
(chair Ei Matsunaga)
168-170: From the standpoint of an information conveyer - Yoshizo Ohno
171-172: From the viepoint of an obstetrician/gynecologist - Shinryo N. Shinagawa
173-178: Genetic counseling from the perspective of a mother and a woman - Makiko Osawa
179-180: Three sorts of ethics - Natuhiko Yosida
181-183: Patenting human DNA - Kotaro Nawa

194-196: 9. Scientific responsibility (chair Michio Okamoto)
197: Congratulatory message - J. Dausset (MURS France)
214-215: Discussion

198-204: Scientist's responsibilities in acquiring knowledge and developing intervention technologies with regard to the human genome - Marcel J. Melancon 198
205-210: Scientific responsibility - D. Charleton Gajdusek
211-213: Ethical feelings in promoting sciences - Kenichi Fukui

216-220: 10. Closing remarks
216-218: Daniel Wikler
219: Wataru Mori (JCST message)
219: Hiraku Takebe
220: Norio Fujiki

221-224: List of Contributor's

Cataloging-in-Publication data

Human Genome Research and Society. Proceedings of the Second International Bioethics Seminar in Fukui, 20-21 March, 1992 / editors, Norio Fujiki and Darryl R.J. Macer.
Christchurch, N.Z. : Eubios Ethics Institute 1992.
Japanese language version ISBN 0-908897-07-3, published 1994.

1 v. Fifty-five papers. Includes index. ISBN 0-908897-03-0
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 (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.

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