Ciba Foundation Symposium 149 - Human Genetic Information: Science, Law and Ethics

220 Pages·8.217 MB·English

HUMAN GENETIC
INFORMATION:
SCIENCE, LAW
AND ETHICS
The Ciba Foundation is an international scientific and educational
charity. It was established in 1947 by the Swiss chemical and
pharmaceutical company of ClBA Limited-now CIBA-GEIGY
Limited. The Foundation operates independently in London under
English trust law.
The Ciba Foundation exists to promote international cooperation
in biological, medical and chemical research. It organizes about
eight international multidisciplinary symposia each year on topics
that seem ready for discussion by a small group of research
workers. The papers and discussions are published in the Ciba
Foundation symposium series. The Foundation also holds many
shorter meetings (not published), organized by the Foundation
itself or by outside scientific organizations. The staff always
welcome suggestions for future meetings.
The Foundation’s house at 41 Portland Place, London W1N 4BN,
provides facilities for meetings of all kinds. Its Media Resource
Service supplies information to journalists on all scientific and
technological topics. The library, open five days a week to any
graduate in science or medicine, also provides information on
scientific meetings throughout the world and answers general
enquiries on biomedical and chemical subjects. Scientists from
any part of the world may stay in the house during working visits
to London.
Ciba Foundation Symposium 149
HUMAN GENETIC
INFORMATION:
SCIENCE, LAW
AND ETHICS
A Wiley-Interscience Publication
1990
JOHN WILEY & SONS
Chichester . New York . Brisbane . Toronto . Singapore
Ciba Foundation 1990
I'ul)li\hed in 19'40 by Iohn Wiley & Sons Ltd, Chictiester, UK.
Suggested series entry for library catalogues:
C'iba toundatioii Symposia
C'iha I.'oundation Symposium 149
is t 21 1 pages, 2 figures
Library nf ( hngress C'atulrJRinR-in-Public.lltionD uta
Human genetic information: science, law, and ethics.
p. cni.-(Ciba Foundation symposium; 149)
'Symposium on Human Genetic Information: Science, Law and Ethics,
held in collahoration with the Akademische Kommission der
llniversitar Hcrn . . . Bern, Swilzcrland, 20-22 June 1989.'
'A Wilcy - I nterscierice publication .'
Includes bi bliographical references.
ISHN 0 471 92624 8
I. Medical genetics-Social aspects-Congresses. 2. Human
gerietics-- Social aspects--Congresses. I. Syinposiuin on I luinan
(ienetic Information: Science, Law, and Ethics (1989: Bern,
Swildarid) 11. Universitail Bern. Akademische Konimission.
I I I. Serie\.
KB155.HX46 19W
573.2 -. dc20
89-70550
CIP
British Library Cataloguing in Publication Data
Huinan genetic information: science. law and ethics.
1. Man. Genetics
I. C'hadwick, Derek II. Hock, Greg 11. Whelan, Julie
IV. Series
573.2' I
ISBN 0 471 92624 8
Phototypese~b y Dobbie Typesciting Limited, Devon.
Printed and bound in Great Britain by Riddles Limited, Guildford, Surrey.
Contents
Symposium on Human Genetic Inf ormation: Science, Law and Ethics, held
in colluboration with the A kadetnische Kormiission der Universiiai Bern,
at the Haus der Universitut, Schlosslislrasse 5, Bern, Switzerland, 20-22
June 1989
Editors: Derek Chadwick, Greg Bock (Organizers) and Julie Whelan
Sir Gustav Nossal Introduction 1
Sydney Brenner Thc human genome: the nature of the enterprise 6
Discussion 12
John Bell Prenatal diagnosis: current approaches and future trends 18
Discussion 26
Paul Debenham The use of genetic markcrs for personal identification
and the analysis of family relationships 37
Discussion 43
Hugh Curling Recent advances in the genetics of psychiatric disorder 48
Discussion 57
Hubert Williamson and Anna M. Kessling The problem of polygenic
disease 63
Discussion 70
Bernard D. Davis Limits to gcnctic intervention in humans: somatic and
germline 81
Discussion 87
Walter Ch. Zimmerli Who has the right to know thc genetic constitution
of a particular person? 93
Discussion 102
Diana Brahams Human genetic information: the legal implications 11 1
Discussion 1 19
V
vi Contents
Norman H. Carey and P. E. Crawley Commercial exploitation of the
human genome: what are the problems? 133
Discussion 143
Rihito Kimura Religious aspects of human genetic information 148
Discussion I 5 5
Bernard Williams Who might I have been? 167
Discussion 173
Max Charlesworth Human genome analysis and the concept of human
nature 180
Discussion 189
Sir Custav Nossal Summing-up 199
Index of contributors 203
Subject index 204
Participants
J. 1. Bell Institute of Molccular Medicine, John Radcliffe Hospital,
Headington, Oxford OX3 9DU, UK
D. Brahams 5 New Square, Lincoln’s Inn, London WCZA 3RJ, UK
S. Brenner MRC Molecular Genetics Unit, Hills Road, Cambridge
CB2 2QH, UK
M. M. Burger Friedrich Miescher Institute, PO Box 2543, CH-4002,
Basel, Switzerland
N. H. Carey Celltech Ltd, 216 Bath Road, Slough, Berkshire SLl 4EN,
UK
M. J. Charlesworth School of Humanities, Deakin University, Geelong,
Victoria 3217, Australia
B. D. Davis Bacterial Physiology Unit, Harvard Medical School, Boston,
MA 02115, USA
P. Debenham International Scientific Services, Cellmark Diagnostics, 8
Blacklands Way, Abingdon Business Park, Abingdon OX14 IDY, UK
B. Dixon 130 Cornwall Road, Ruislip Manor, Middlescx HA4 6AW. UK
C. R. Dunstan 9 Maryfield Avenue, Pennsylvania, Exeter EX4 6JN, UK
H. M. D. Curling Academic Department of Psychiatry, University
College & Middlesex School of Medicine, Riding House Street, London
W1P 7PN, UK
R. Kimura School of Human Sciences, Waseda University, 6-1
Nishiwaseda, 1-cbome, Shinjuku-ku, Tokyo 169, Japan, and Kennedy
Institute of Ethics, Georgetown University, Washington DC 20057, USA
vii
viii Participants
A. M. Kuliev Institute of Medical Genetics, Moscvorecheie Str 1, 115478
Moscow, USSR
A. I,. McLaren MRC Mammalian Development Unit. University College
London, Wolfson House, 4 Stephenson Way, London NW 1 2HE, UK
A. G. Motulsky Center for lnhcritcd Diseases, RG-25, University of
Washington School of Medicine, Seattle, WA 98195, USA
Sir Gustav Nossal (Chairinan) The Walter & Eliza Hall Institute of
Medical Research, Post Office, Royal Melbourne Hospital, Victoria
3050, Australia
M. F:. Pembrey Mothercare Department of Paediatric Genetics, Institute
of Child Health, 30 Guilford Street, London WClN IEH, UK
C‘. Sirinavin Medical Genetics Unit, Department of Medicine, Faculty of
Medicine Siriraj Hospital, Mahidol University, 2 Prannok Road,
Bangkoknoi, Bangkok 10700, Thailand
K. Seczygiel Pontifical Theological Academy of Cracow, U1.
Franciszkanska 3, 3 1-004 Cracow, Poland
E. H. Weibel Anatomisches Institut der Universitat Bern, Buhlstrasse 26,
CH-3000 Bern 9, Switzerland
C. Weissmann Instilut fiir Molekularbiologie 1, Universitat Zurich,
I-hggerberg, CH-8093 Zurich, Switzerland
R. Williams Dcpartinent of Philosophy, University of California,
Berkeley, CA 94720, USA
H. Williamson Department of Biochemistry & Molecular Genetics. St
Mary’s Hospital Medical School, Norfolk Place, London W2 IPG, UK
W. Ch. Zimmerli Pliilosophie 11, Otto-Friedrich-Universitat, Postfach
1549, D-8600 Bamtierg, and Instituts fur Gesellschaft und Wissenschaft
an der Friedrich-Alexander-Universitat,A urjcre Bruckcr Strasse 33,
11-8520 Erlangen, Federal Republic of Germany
Preface
The 280th Ciba Foundatio Symposium ( umbered 149 in the new series) on
Human Genetic Information: Science, L.aw and Ethics was held at the Haus
der Universitat, Bern, Switzerland on 20-22 June 1989, forming part of a week
of Celebrations marking the 40th anniversary of the Foundation. The symposium
and allied press conference and open meeting were the fruits of an especially
cordial collaboration with the Akademische Kommission der Universitat Eern
and, in particular, with its President, Professor Ewald Weibel, who contributed
with immense energy and enthusiasm to the week’s events. I am glad to have
this opportunity to record publicly our indebtedness to him and to his staff for
their invaluable support.
The symposium is an expression of the Foundation’s continuing interest in
tackling issues of major social concern. Under its distinguished chairman, Sir
Gustav Nossal, Director of the Walter and Eliza Hall Institute in Melbourne,
the meeting brought together an international group of specialists from the
diverse disciplines of molecular biology, medicine, philosophy, theology and
law, to discuss scientific, legal, ethical, social and economic issues arising out
of our ability to map and sequence the human genome. It seems particularly
appropriate that our 40th anniversary celebrations should have taken place in
the capital city of the country of our Founder and patron, originally CIBA and
now CIBA-GEIGY of Basle. At the opening ceremony, Dr Albert Bodmer,
Deputy Chairman of the Company, emphasized both the Foundation’s
independence and the Founder company’s pleasure at the way the Foundation
has developed. In reply, I was delighted to be able to pledge publicly our
determination to continue in our task of fostering cooperation between scientists
and between nations. This book bears witness to that resolve.
Derek Chadwick
Director, The Ciba Foundation
ix
Novartis Foundation Symposium
Edited by Derek Chadwick, Greg Bock, Julie Whelm
Copyright 0 1990 by Ciba Foundation
Introduction
G. J. V. Nossal
The Walter & Eliza Hall Institute of Medical Research, Post Office, Royal Melbourne
Hospital, Victoria 3050, Australia
On behalf of all twenty-eight members and observers of this symposium,
from nine different countries, I wish to express our gratitude to the Ciba
Foundation under its distinguished new Director, Derek Chadwick, for its usual
foresight and good taste in choosing thc challenging topic: Human Genetic
Information: Science, Law and Ethics for this Symposium No. 149. I wish to
rccord further our humble thanks for having been selected to participate in
these 40th Anniversary celebrations in the historic and beautiful city of Berne.
I am grateful to thc Rector of the University of Berne, Professor Pi0 Caroni,
and to the President of the Akademische Kommission, Professor Ewald Weibel,
for allowing us to meet within these splendid conference quarters at the
Haus der Universitat. As we heard at the Civic Reception, the Ciba Foundation
has a unique rccord in organizing these small, elite and highly topical meetings,
and in publishing both the papers and the discussion in a timely and elegant
manner. As part of this tradition, symposia of a purely scientific nature are
interspersed not infrequently with ones where matters of broad societal and
humanitarian concern are addressed. Yet few, if any, of the previous topics
have the awesome depth and sweep of the present symposium: the DNA story,
in all its dimensions.
When historians of the future ponder the twentieth century, what will they
focus on as its central hallmark? Will it be the holocaust, and its frightening
reminder of the fragility of human decency? Will it be the rise and fall of
communism? Will it be the end of the colonial era in its traditional sense, and
the triumphs and trials of the newly independent nations? Will it be the women’s
movement, with its profound effects on one half of our species? While all of
these will naturally occupy much of the stage, I think the central, overriding
theme, which will transcend these specific issues because in a sense all of them
are dependent on it, will be the rise of science and technology as the dominant
force shaping society and dictating the international agenda. Furthermore, one
I990 Human Genetic Inf ormation: Science, Law and Ethics. Wiley, Chichester (Ciba Foundation
Symposium 149) p 1-5
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