Aids: Society, Ethics and Law

581 Pages·2001·15.877 MB·English

by  Udo Schuklenk

AIDS: Society, Ethics and Law
The International Library of Medicine, Ethics and Law
Series Editor: Michael D. Freeman
Titles in the Series
Death, Dying and the Ending of Life The Genome Project and Gene Therapy
Margaret P. Battin, Leslie Francis and Sheila A.M. McLean
Bruce Landesman
Rights and Resources
Abortion Frances H. Miller
Belinda Bennett
AIDS: Society, Ethics and Law
Ethics and Medical Decision-Making Udo Schiiklenk
Michael D. Freeman
Women, Medicine, Ethics and the Law
Children, Medicine and the Law Susan Sherwin and Barbara Parish
Michael D. Freeman
Legal and Ethical Issues in Human
Health and Human Rights Reproduction
Lawrence O. Gostin and James G. Hodge Jr. Bonnie Steinbock
Mental Illness, Medicine and Law Medical Practice and Malpractice
Martin Lyon Levine Harvey Teff
The Elderly Human Experimentation and Research
Martin Lyon Levine David N. Weis stub and George F. Tomossy
AIDS: Society, Ethics and
Law
Edited by
Udo Schiiklenk
University of the Witwatersrand, South Africa
First published 200 I by Dartmouth Publishing Company and Ashgate Publishing
Published 2017 by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
711 Third Avenue, New York, NY 10017, USA
Routledge is an imprint oft he Taylor & Francis Group, an iriforma business
Copyright © Udo Schiiklenk 2001. For copyright of individual articles please refer to the
Acknowledgements.
All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by
any electronic, mechanical, or other means, now known or hereafter invented, including photocopying
and recording, or in any information storage or retrieval system, without permission in writing from the
publishers.
Notice:
Product or corporate names may be trademarks or registered trademarks, and are used only for
identification and explanation without intent to infringe.
British Library Cataloguing in Publication Data
AIDS : society, ethics and law. - (The international
library of medicine, ethics and law)
1. AIDS (Disease) - Social aspects 2. AIDS (Disease) - Moral
and ethical aspects 3. AIDS (Disease) - Law and legislation
I. Schiiklenk, Udo
362.1 '969792
Library of Congress Cataloging-in-Publication Data
AIDS, society, ethics and law / edited by Udo Schiiklenk.
p. crn.
Includes bibliographical references and index.
ISBN 0-7546-2103-0
1. AIDS (Disease)-Social aspects. 2. AIDS (Disease)-Moral and ethical aspects. 3.
AIDS (Disease)-Law and legislation. I. Schiiklenk, Udo.
RC607 .A26 A3566 2000
362.1 '969792--dc2 l 00-032268
ISBN 13: 978-0-7546-2103-4 (hbk)
Contents
Acknowledgements ix
Series Preface xiii
Introduction XV
PART I THE PHYSICIAN-PATIENT RELATIONSHIP
Duty to Treat
1 George J. Annas (1988), ‘Legal Risks and Responsibilities of Physicians in the
AIDS Epidemic’, Hastings Center Report, April/May, pp. 26-32. 5
2 Norman Daniels (1991), ‘Duty to Treat or Right to Refuse?’, Hastings Center
Report, March/April, pp. 36-46. 13
3 Doran Smolkin (1997), ‘HIV Infection, Risk Taking, and the Duty to Treat’,
Journal of Medicine and Philosophy, 22, pp. 55-74. 25
Confidentiality/Privacy
4 Gary B. Melton (1988), ‘Ethical and Legal Issues in AIDS-Related Practice’,
American Psychologist, 43, pp. 941-47 47
5 Kenneth M. Boyd (1992), ‘HIV Infection and AIDS: The Ethics of Medical
Confidentiality’, Journal of Medical Ethics, 18, pp. 173-79. 55
Infected Health Care Workers
6 Patti Miller Tereskerz, Richard D. Pearson and Janine Jagger (1999), ‘Infected
Physicians and Invasive Procedures: National Policy and Legal Reality’, The
Milbank Quarterly, 77, pp. 511-29. 65
7 Karen C. Lieberman and Arthur R. Derse (1992), ‘HIV-Positive Health Care
Workers and the Obligation to Disclose: Do Patients Have a Right to Know?’,
Journal of Legal Medicine, 13, pp. 333-56. 85
PART II AIDS AND THE LAW
8 Larry Gostin (1989), ‘The Politics of AIDS: Compulsory State Powers, Public
Health, and Civil Liberties’, Ohio State Law Journal, 49, pp. 1017-58. 111
9 Richard D. Mohr (1987), ‘AIDS, Gays, and State Coercion’, Bioethics, 1, pp. 35-50. 153
10 Alistair Orr (1989), ‘Legal AIDS: Implications of AIDS and HIV for British and
American Law’, Journal of Medical Ethics, 15, pp. 61-67. 169
11 Helen Power (1997), ‘HIV/AIDS, Sex and the Criminal Law’, Journal of Social
Welfare and Family Law, 19, pp. 343-51. 177
vi AIDS: Society, Ethics and Law
12 Editor (1998), ‘Second International Consultation on HIV/AIDS and Human
Rights Adopts International Guidelines’, International Digest of Health
Legislation, 49, pp. 703-6. 187
PART III HIV TESTING
General
13 G.R. McLean and T. Jenkins (1994), ‘HIV Testing and Informed Consent -
Ethical Considerations’, South African Medical Journal (SAMJ), 84, pp. 669-74. 195
14 Martin Gunderson, David Mayo and Frank Rhame (1996), ‘Routine HIV Testing
of Hospital Patients and Pregnant Women: Informed Consent in the Real World’,
Kennedy Institute of Ethics Journal, 6, pp. 161-82. 201
Pregnant Women
15 Quarraisha Abdool Karim, Salim S. Abdool Karim, Hoosen M. Coovadia and
Mervyn Susser (1998), ‘Informed Consent for HIV Testing in a South African
Hospital: Is It Truly Informed and Truly Voluntary?’, American Journal of Public
Health, 88, pp. 637-40. 225
16 Theresa M. McGovern (1997), ‘Mandatory HIV Testing and Treating of Child-
Bearing Women: An Unnatural, Illegal, and Unsound Approach’, Columbia
Human Rights Law Review, 28, pp. 469-99. 229
PART IV CLINICAL RESEARCH
General
17 Joni N. Gray and Gary B. Melton (1985), ‘The Law and Ethics of Psychosocial
Research on AIDS’, Nebraska Law Review, 64, pp. 637-88. 265
18 Wendy K. Mariner (1990), ‘The Ethical Conduct of Clinical Trials of HIV
Vaccines’, Evaluation Review, 14, pp. 538-64. 317
19 Nancy E. Kass, Holly A. Taylor and Patricia A. King (1996), ‘Harms of Excluding
Pregnant Women from Clinical Research: The Case of HIV-Infected Pregnant
Women’, Journal of Law, Medicine & Ethics, 24, pp. 36-46. 345
20 John D. Arras (1990), ‘Noncompliance in AIDS Research’, Hastings Center
Report, September/October, pp. 24-32. 357
Community Consultation
21 Gary B. Melton, Robert J. Levine, Gerald P. Koocher, Robert Rosenthal and
William C. Thompson (1988), ‘Community Consultation in Socially Sensitive
Research: Lessons from Clinical Trials of Treatments for AIDS’, American
Psychologist, 43, pp. 573-81. 369
22 Herbert R. Spiers (1991), ‘Community Consultation and AIDS Clinical Trials,
Parts 1-3’, IRB: A Review of Human Subjects Research, 13, May-June, pp. 7-10,
July-August, pp. 1-6, September-October, pp. 3-7. 379
AIDS: Society, Ethics and Law vii
23 Joan E. Sieber and James L. Sorensen (1992), ‘Conducting Social and Behavioral
AIDS Research in Drug Treatment Clinics’, IRB: A Review of Human Subjects
Research, 14, September-October, pp. 1-5. 395
Developing Countries
24 Peter Lurie and Sidney M. Wolfe (1997), ‘Unethical Trials of Interventions to
Reduce Perinatal Transmission of the Human Immunodeficiency Virus in
Developing Countries’, New England Journal of Medicine, 337, pp. 853-56. 403
25 Harold Varmus and David Satcher (1997), ‘Ethical Complexities of Conducting
Research in Developing Countries’, New England Journal of Medicine, 337,
pp. 1003-5. 407
26 George J. Annas and Michael A. Grodin (1998), ‘Human Rights and Maternal-
Fetal HIV Transmission Prevention Trials in Africa’, American Journal of Public
Health, 88, pp. 560-63. 411
27 Robert J. Levine (1998), ‘The “Best Proven Therapeutic Method” Standard in
Clinical Trials in Technologically Developing Countries’, IRB: A Review of
Human Subjects Research, 20, January-February, pp. 5-9. 415
28 Peter Lurie, Makonnen Bishaw, Margaret A. Chesney, Molly Cooke, Maria
Eugenia Lemos Fernandes, Norman Hearst, Edward Katongole-Mbidde, Supom
Koetsawang, Christina P. Lindan, Jeffrey Mandel, Marvellous Mhloyi and
Thomas J. Coates (1994), ‘Ethical, Behavioral, and Social Aspects of HIV
Vaccine Trials in Developing Countries’, JAMA, 271, pp. 295-301. 421
PART V ACCESS TO (EXPERIMENTAL) DRUGS
29 Ellen C. Cooper (1989), ‘Controlled Clinical Trials of AIDS Drugs: The Best
Hope’, JAMA, 261, p. 2445. 431
30 Martin Delaney (1989), ‘The Case for Patient Access to Experimental Therapy’,
The Journal of Infectious Diseases, 159, pp. 416-19. 433
31 Udo Schtiklenk and Carlton Hogan (1996), ‘Patient Access to Experimental
Drugs and AIDS Clinical Trial Designs: Ethical Issues’, Cambridge Quarterly of
Healthcare Ethics, 5, pp. 400-409. 437
32 Harold Edgar and David J. Rothman (1990), ‘New Rules for New Drugs: The
Challenge of AIDS to the Regulatory Process’, The Milbank Quarterly, 68,
(Supplement 1), pp. 111-42. 447
33 David A. Salisbury and Martin T. Schechter (1990), ‘AIDS Trials, Civil Liberties
and the Social Control of Therapy: Should we Embrace New Drugs with Open
Arms?’, Canadian Medical Association Journal, 142, pp. 1057-62. 479
34 Andrew F. Shorr (1992), ‘AIDS and the FDA: An Ethical Case for Limiting
Patient Access to New Medical Therapies’, IRB: A Review of Human Subjects
Research, 14, July-August, pp. 1-5. 485
35 David B. Resnik (2001), ‘Developing Drugs for the Developing World: An
Economic, Legal, Moral, and Political Dilemma’, Developing World Bioethics, 1,
pp. 11-32. 491
viii AIDS: Society, Ethics and Law
36 Dan W. Brock (2001), ‘Some Questions About the Moral Responsibilities of Drug
Companies in Developing Countries’, Developing World Bioethics, 1, pp. 33-37. 513
37 Norman Daniels (2001), ‘Social Responsibility and Global Pharmaceutical
Companies’, Developing World Bioethics, 1, pp. 38-41. 519
PART VI DYING WITH DIGNITY
38 Sophia Vinogradov, Joe T. Thornton, A-J. Rock Levinson and Michael L. Callen
(1984), ‘If I Have AIDS, Then Let Me Die Now!’, Hastings Center Report, 14,
pp. 24-26. 525
39 Margaret P. Battin (1994), ‘Going Early, Going Late: The Rationality of Decisions
about Suicide in AIDS’, Journal of Medicine and Philosophy, 19, pp. 571—94. 529
Name Index 553
Acknowledgements
The editor and publishers wish to thank the following for permission to use copyright material.
American Public Health Association for the essays : Quarraisha Abdool Karim, Salim S. Abdool
Karim, Hoosen M. Coovadia and Mervyn Susser (1998), ‘Informed Consent for HIV Testing
in a South African Hospital: Is It Truly Informed and Truly Voluntary?’, American Journal of
Public Health, 88, pp. 637-40; George J. Annas and Michael A. Grodin (1998), ‘Human Rights
and Maternal-Fetal HIV Transmission Prevention Trials in Africa’, American Journal of Public
Health, 88, pp. 560-63.
American Psychological Association for the essays: Gary B. Melton, Robert J. Levine, Gerald
P. Koocher, Robert Rosenthal and William C. Thompson (1988), ‘Community Consultation in
Socially Sensitive Research: Lessons from Clinical Trials of Treatments for AIDS’, American
Psychologist, 43, pp. 573-81. Copyright © 1988 American Psychological Association. Reprinted
with permission; Gary B. Melton (1988), ‘Ethical and Legal Issues in AIDS-Related Practice’,
American Psychologist, 43, pp. 941-47. Copyright © 1988 American Psychological Association.
Reprinted with permission.
American Society of Law, Medicine & Ethics for the essay: Nancy E. Kass, Holly A. Taylor
and Patricia A. King (1996), ‘Harms of Excluding Pregnant Women from Clinical Research:
The Case of HIV-Infected Pregnant Women’, Journal of Law, Medicine & Ethics, 24, pp. 36-
46.Copyright © 1996. Reprinted with the permission of the American Society of Law, Medicine
& Ethics. All rights reserved.
Blackwell Publishers, Inc. for the essay: Harold Edgar and David J. Rothman (1990), ‘New
Rules for New Drugs: The Challenge of AIDS to the Regulatory Process’, The Milbank
Quarterly, 68, pp. 111-42. Copyright © 1990 Milbank Memorial Fund.
Blackwell Publishers Limited for the essays: Richard D. Mohr (1987), ‘AIDS, Gays, and State
Coercion’, Bioethics, 1, pp. 35-50. Copyright © 1987 Richard D. Mohr; Patti Miller Tereskerz,
Richard D. Pearson and Janine Jagger (1999), ‘Infected Physicians and Invasive Procedures:
National Policy and Legal Reality’, The Milbank Quarterly, 77, pp. 511-29. Copyright © 1999
Milbank Quarterly; David B. Resnik (2001), ‘Developing Drugs for the Developing World: An
Economic, Legal, Moral, and Political Dilemma’, Developing World Bioethics, 1, pp. 11-32.
Copyright © 1993 Blackwell Publishers Ltd; Dan W. Brock (2001), ‘Some Questions About
the Moral Responsibilities of Drug Companies in Developing Countries’, Developing World
Bioethics, 1, pp. 33-37. Copyright © 1993 Blackwell Publishers Ltd; Norman Daniels (2001),
‘Social Responsibility and Global Pharmaceutical Companies’, Developing World Bioethics,
1, pp. 38—41. Copyright © 1993 Blackwell Publishers Ltd.