Genetics and the Law

523 Pages·1976·20.64 MB·English

by  Margery W. Shaw

Genetics and the Law
Edited by
AUBREY MILUNSKY, MB. B. Ch., M. R. C. Po, D. C. H.
Assistant Professor of Pediatrics, Harvard Medical School;
Director, Genetics Laboratory, Eunice Kennedy Shriver Center
at the Walter E. Fernald State School;
Medical Geneticist, Massachusetts General Hospital and the
Center for Human Genetics, Harvard Medical School,
Boston, Massachusetts
and
GEORGE J. ANNAS, J. D., M. P. H.
Director, Center for Law and Health Sciences, Boston University School of Law;
Assistant Professor, Department of Socio-Medical Sciences and Community Medicine
(Law and Medicine), Boston University School of Medicine, Boston, Massachusetts;
Lecturer in Legal Medicine, Boston College Law School,
Newton, Massachusetts
PLENUM PRESS· NEW YORK AND LONDON
Library of Congress Cataloging in Publication Data
National Symposium on Genetics and the Law, Boston, 1975.
Genetics and the law.
"Proceedings of a National Symposium on Genetics and the Law held in Boston,
Mass., May 18-20, 1975, and co-sponsored by the Boston Chapter of the National
Genetics Foundation and the American Society of Law and Medicine."
Bibliography: p.
Includes index.
1. Medical genetics-Law and legislation-United States-Congresses. 2. Medicine,
Experimental-Law and legislation-United States. I. Milunsky, Aubrey. II. Annas,
George J. III. National Gen·etics Foundation. Boston Chapter. IV. American Society
of Law and Medicine. V. Title. [DNLM: 1. Genetic counseling-Congresses. 2. Ethics,
Medical-Congresses. 3. Hereditary diseases-Prevention and control-United States
Legislation-Congresses. 5. Human experimentation-United States-Legislation
Congresses. 6. Eugenics-United States-Legislation-Congresses. OZ50 N28g 19751
KF3827.G4N38 1975 344'.73'041 75-38569
ISBN-13: 978-1-4684-2231-3 e-ISBN-13: 978-1-4684-2229-0
001: 10.1007/978-1-4684-2229-0
First Printing - January 1976
Second Printing - December 1976
Proceedings of a National Symposium on Genetics and the Law
held in Boston, Mass., May 18-20,1975, and cosponsored by the
Boston Chapter of the National Genetics Foundation and the
American Society of Law and Medicine, Inc.
©1976 Plenum Press, New York
Softcover reprint of the hardcover 1s l edition 1976
A Division of Plenum Publishing Corporation
227 West 17th Street, New York, N.Y. 10011
United Kingdom edition published by Plenum Press. London
A Division of Plenum Publishing Company, Ltd.
Davis House (4th Floor), 8 Scrubs Lane, Harlesden, London, NW10 6SE, England
All rights reserved
No part of this book may be reproduced, stored in a retrieval system, or transmitted,
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recording, or otherwise, without written permission from the Publisher
Preface
Society has historically not taken a benign view of genetic
disease. The laws permitting sterilization of the mentally re
and those proscribing consanguineous marriages are but two
tarded~
examples. Indeed as far back as the 5th-10th centuries, B.C.E.,
consanguineous unions were outlawed (Leviticus XVIII, 6).
Case law has traditionally tended toward the conservative. It
is reactive rather than directive, exerting its influence only
after an individual or group has sustained injury and brought suit.
In contrast, state legislatures have not been inhibited in enacting
statutes. Many of their products can be characterized as hasty,
unnecessary, ill-conceived, and based on the heart rather than the
head. Moreover the lack of expert consultation sought has also
been remarkable. One state legislature, for example, has advocated
immunization for sickle cell anemia! Many others have enacted laws
for the screening of inborn errors of metabolism, e.g., phenylketon
uria, but have poorly defined the lines of responsibility to secure
compliance.
A spate of specific disease-related bills has emerged in the
u.S. Congress, each seeking recognition and appropriations. Sickle
cell anemia, hemophilia, Cooley's anemia and Tay-Sachs disease have
been among the front-runners for support. Finally, in 1975, Congress
has begun to examine an omnibus bill concerning all forms of genetic
disease. The bill, termed the National Genetic Diseases Act is,
however, still far from being enacted.
The striking recent advances in medical technology have
brought the basic confrontations between Genetics and the Law into
sharp relief. Informed consent and confidentiality are terms that
have had to be added to the lexicon of genetic counselors. In the
research area, a rash of state statutes appeared in 1973-1974
aimed at prohibiting fetal experimentation. Since physicians, law
yers, philosophers and theologians have not been able to settle
the question of when life begins, these laws have served mainly to
mirror, and on occasion compound, the problem. The legal litera
ture is replete with differences of opinion concerning court de-
v
PREFACE
cisions on fetal viability, legal personality and personhood. The
recent Boston trial of Dr. Kenneth Edelin simply focused attention
on these now glaring medicolegal problems.
Society has manifested increasing concern about experiments
involving gene manipulation, cloning and in vitro fertilization.
Calls have been made to interdict further study into gene manipu
lation. Should legislation be enacted to restrict certain types
of research it may prove harmful to science and society in the
long run. A balance between the apparent dangers of uncontrolled
scientific initiatives and restricted research must be sought.
Intrusion by government into what mayor may not be researched by
individual scientists does, however, raise very serious societal
issues.
Heated professional and public controversy has enveloped a
large newborn chromosomal screening program in Boston. Problems
arose concerning informed consent, self-fulfilling prophecy, psy
chologic risks, and especially the relevance of an XYY karyotype
to deviant behavior. These and other aspects of the XYY contro
versy are discussed in detail in these Proceedings.
Because of serious concerns about fetal and human rights, a
moratorium on fetal research was imposed by the u.S. Congress in
1974 while a specially created commission studied and reported on
the issues. The commission recently recommended that such research
resume under strict review procedures. Meanwhile, a number of
Boston medical researchers are about to be tried for grave-robbing
- a charge arising out of their experiments on the effects of anti
biotic transfer from mother to fetus. Their protocols had passed
through the then-required research review committees. The trial
will necessarily raise issues concerning both the adequacy of the
review procedure and the relevance of a 19th century criminal
statute to 20th century medical experimentation.
Advances in the medical care of sick and malformed newborns
now enables many genetically defective infants to survive. Deci
sions by parents, physicians, or both, to allow such infants to die
may be homicide if treatment could permit their survival. In this
volume are eloquent arguments that the admittedly harsh and unen
forced state of the law should nevertheless not be changed. Such
advocacy may appear untenable, but there are few unequivocal an
swers to this or the other dilemmas in genetics which now confront
the law.
PREFACE vii
Against this background of legislative and judicial activity
we decided to examine the issues and to present as best an overall
perspective as was possible. To this end a distinguished faculty
of scientists, physicians and lawyers was assembled. It is our
hope that their deliberations in these Proceedings and the appended
selected bibliography will help provide a basis upon which a bal
anced informed public policy can be formulated. There is nothing
inherent preventing the law from responding in a productive and
humane manner to genetic advances.
Boston Aubrey Milunsky
September, 1975 George J. Annas
Acknowledgments
We acknowledge with appreciation the support and sponsorship
of the Boston Chapter of the National Genetics Foundation and
the American Society of Law and Medicine. The guidance and help
of Dr. Elliot L. Sagall, President of the American Society of
Law and Medicine, in the organization of this meeting was' very much
appreciated. Special thanks are due to Debbie Sack, Karen Brockman,
and Myra Fraidin for their help in organizing the Symposium. We
are indebted to Babette Milunsky for her major efforts, eye for
detail and wise counsel in organizing this meeting. The manuscript
was typed by Carmela M. Ryan, whose expertise, patience and charm
is again gratefully acknowledged. The manuscript was prepared
through the combined efforts of Elizabeth Keel, Patricia Callahan,
Judy Heck and Babette Milunsky.
viii
Contents
THE FETUS AND THE NEWBORN
Lega 1 Status of the Fetus ..•.......•.......•...........•• 3
Margery W. Shaw and Catherine Damme
Tbe Fetus and the Law .....•....•...........••..•.••...... 19
Harold P. Green
The Legal Aspects of Fetal Viability .......••.••....•.•.. 29
Leonard H. Glantz
Discussion
Papers of M.W. Shaw, H.P. Green and L.H. Glantz
Principal Discussants: F.D. Frigoletto, N.L.
Chayet, S. Bok and A.J. Dyck ....•.•......•......•.. 45
General Discussion ............•.............•........ 45
Medico-Legal Issues in Prenatal Genetic Diagnosis •.••...• 53
Aubrey Milunsky
Discussion............................................. 61
Karyotype, Predictability and Culpability ..•..••...•.•..• 63
Alan M. Dershowitz
Geneticophobia and the Implications of Screening for the
XYY Genotype in Newborn Infants .............••...•.•.•. 73
Ernest B. Hook
Discussion
Papers of A.M. Dershowitz and E.B. Hook
Principle Discussant: J.R. Beckwith ............••.•. 87
General Discussion ...•.•...•..............•••..•.•..• 88
ix
x CONTENTS
GENETIC COUNSELING - MASS POPULATION SCREENING FOR HOMOZYGOTES
AND HETEROZYGOTES
Medicolegal Aspects of Genetic Counseling 105
Kurt Hirschhorn
Problems of Informed Consent and Confidentiality in
Geneti c Counsel i ng ..................................... 111
George J. Annas
Discussion
Papers of K. Hirschhorn and G.J. Annas
Principal Discussants: S.S. Gellis and S.J. Reiser .. 123
General Discussion................................... 125
--Problems in Genetic Screening Which Confront the Law 133
Harvey L. Levy
The Liability of Physicians and Associated Personnel
for Malpractice in Genetic Screening ................... 139
Jon R. Waltz
--State Supported Mass Genetic Screening Programs .......... 159
Phil ip Rei lly
Discussion
Papers of H.L. Levy, J.R. Waltz and P. Reilly
Principal Discussant: R.W. Erbe ..................... 185
General Discussion................................... 187
GENETICS AND FAMILY LAW
Artificial Insemination by Donor - Status and Problems 197
Donald P. Goldstein
Legal Aspects of Artificial Insemination by Donor and
Paternity Testing ...................................... 203
Joseph M. Healey, Jr.
The Current Status of Paternity Testing .................. 219
Angelyn A. Konugres
Discussion
Papers of D.P. Goldstein, J.M. Healey and A.A.
Konugres
General Di scussion ................................... 239
xi
CONTENTS
Genetic Counseling for Couples Who Are First Cousins ..... 243
Lewis B. Holmes
State Channeling of Gene Flow by Regulation of Marriage
and Procreation ....................................... . 247
Seymour Lederberg
Voluntary Sterilization of the Mentally Retarded ........ . 267
Charles H. Baron
Discussion
Papers of L.B. Holmes, S. Lederberg and C.H. Baron
General Discussion ............................•...... 285
Rights and Responsibilities of the Insurer 289
John L. Thompson and Wendy M. Greenfield
Discussion
Principle Discussant: G.W. Melcher .................. 295
General Discussion ................................... 295
RESEARCH AND EXPERIMENTATION - IN VITRO FERTILIZATION -
CLONAL MAN
The Social Control of Science 301
Arthur G. Steinberg
Discussion
Principal Discussant: B.D. Davis .................... 311
General Discussion................................... 314
Experimentation and Human Genetics: Problems of
"Consent" .............................................. 319
Alexander M. Capron
Discussion
Principal Discussant: S.L. Chorover ................. 341
General Discussion................................... 344
'On Legislating Fetal Research............................ 351
Charles U. Lowe
Discussion
Principal Discussant: M.J. Mahoney .................. 357
In Vitro Fertilization - A Legal Perspective ............. 359
Philip Reilly
xii
CONTENTS
Law and Cloning - The State as Regulator of Gene Function. 377
Seymour Lederberg
The Psychopathology of Clonal Man •....•••.•...•.•.•.••••• 387
Leon Eisenberg
Discussion
Papers of P. Reilly, S. Lederberg and L. Eisenberg
Principal Discussant: M.W. Wartofsky •••••.••••.•.••• 397
General Discussion .••...••.•..•.•..•...•.••.•••...... 400
EUGENICS, ETHICS, LAW AND SOCIETY
Biological Roots of Ethical Principles ................... 407
Salvadore E. Luria
"On' the Necessity of Legislating Morality for Genetic
Decisions .....•...•.•.•......•.•.•.•............•...... 411
Daniel Callahan
'Why Shouldn't We Have a Eugenic Policy? ......•...••.•.•.. 421
Marc Lappe'
Discussion
Papers of S.E. Luria, S. Callahan and M. Lappe
Genera 1 Di scussion ......•..•••......•................ 431
'Authorizing Death for Anomalous Newborns .........•..•.... 435
Robert A. Burt
'Discretionary Non-Treatment of Defective Newborns .•...... 451
John A. Robertson
From Social Movement to Clinical Medicine - The Role of
Law and the Medical Profession in Regulating Applied
Human Genetics ..................................•.•.•.. 467
James R. Sorenson
Discussion
Papers of R.A. Burt, J.A. Robertson and J.R. Sorenson
General Discussion ................................... 487
Bibliography 495
Contri butors ..............................•.............. 517
Index .............................................•..... 521