MORAL ENTANGLEMENTS This page intentionally left blank MORAL ENTANGLEMENTS The Ancillary-Care Obligations of Medical Researchers Henry S. Richardson 1 3 Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford New York Auckland Cape Town Dar es Salaam Hong Kong Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto With offices in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam Oxford is a registered trademark of Oxford University Press in the UK and certain other countries. Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016 © Oxford University Press 2012 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by license, or under terms agreed with the appropriate reproduction rights organization. Inquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above. You must not circulate this work in any other form and you must impose this same condition on any acquirer. Library of Congress Cataloging-in-Publication Data Richardson, Henry S. Moral entanglements : the ancillary-care obligations of medical researchers / Henry S. Richardson. p. ; cm. Includes bibliographical references. ISBN 978–0–19–538893–0 (alk. paper) I. Title. [DNLM: 1. Research Personnel—ethics. 2. Biomedical Research—ethics. 3. Health Care Rationing—ethics. 4. Moral Obligations. W 20.55.E7] 174.2’8—dc23 2012004799 1 3 5 7 9 8 6 4 2 Printed in the United States of America on acid-free paper For Ben and Hope This page intentionally left blank CONTENTS List of Tables, Figures, and Cases ix Preface xi 1. Medical Researchers’ Ancillary-Care Obligations: A Neglected Issue 1 A Perplexing Issue 5 Ancillary-Care Obligations and the Distinctive Ancillary-Care Obligation 12 2. Special Ancillary-Care Obligations: Th e Partial-Entrustment Model 23 Th e Existing Lack of Guidance 24 Scope: Partial Entrustment of Aspects of Health 31 Th e Variable Strength of Ancillary-Care Claims 41 Combining the Tests of Scope and Strength 49 Controversy Surrounding the Scope Requirement 51 3. Th e Moral Basis of the Partial-Entrustment Model 59 A Range of Intimacies 71 Th e Duty to Warn 75 Autonomy-Centered Reasons for Privacy Rights 78 vii CONTENTS Ancillary Duties of Care 84 Returning to the Context of Medical Research 96 Potential Rival Accounts: Vulnerability and Th reat Avoidance 98 4. Justice, Exploitation, and Ancillary Care 107 Why Special Ancillary-Care Obligations Cannot Rest on Justice 110 Will Providing Ancillary Care Confl ict with Justice? 118 Justice Reinforcing Ancillary-Care Claims 128 5. Limits on the Waiver of Ancillary-Care Obligations 133 Th e Diffi culty of Annulling Ancillary-Care Claims 135 Moral Constraints on Soliciting Waivers of Ancillary-Care Claims 143 6. Gradations of Ancillary-Care Responsibility 153 Within the Scope: Minimally, Clearly, or Centrally? 157 Variations in the Expectable Depth of the Researcher–Participant Relationship 161 Variation in Relative Cost 163 Putt ing Th ese Factors Together 165 Conclusion 168 7. Issues for Further Exploration 171 Needed Conceptual Work 174 Needed Empirical Work 198 8. Philosophical Implications and Practical Steps 203 Philosophical Implications 205 Practical Steps 216 References 229 Index 239 viii LIST OF TABLES, FIGURES, AND CASES Tables Table 1 General and Special Grounds of Ancillary-Care Obligations 15 Table 2 Functions of Obtaining Informed Consent 34 Figures Figure 1 Th e Partial-Entrustment Model’s Two Tests 50 Figure 2 Th e Elements Generating Privacy-Based Moral Entanglements 62 Figure 3 Privacy-Based Moral Entanglements: Putt ing the Pieces Together 87 Figure 4 Four Grades of Ancillary-Care Obligation for ART Provision 167 Cases Advanced Cervical Cancer in a HIV-Transmission Study 18, 104, 197 Brain Scans 5, 25–26, 36, 37, 97, 175, 190, 197 Malaria Researchers and Schistosomiasis 4, 11, 16, 17, 36, 49n., 50, 64, 88n., 96, 105, 174, 197 Th e Massage Th erapist and the Mole 21n., 77, 92, 100 N’s Seatmate’s Pills 140 Th e Old Man and the Groceries 66, 68, 73, 88n., 92, 95, 96, 103 Th e Participant’s Feverish Child 185 Quinodyne 116, 131 -132 ix
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