Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Eubios Ethics Institute 1994
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.
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)
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
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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