Pediatric Ethics: Protecting the Interests of Children PDF
Preview Pediatric Ethics: Protecting the Interests of Children
Pediatric Ethics Pediatric Ethics Protecting the Interests of Children Alan R. Fleischman, M.D. 1 1 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 is a registered trade mark 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, United States of America. © Oxford University Press 2016 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. Names: Fleischman, Alan R., author. Title: Pediatric ethics : protecting the interests of children / Alan R. Fleischman. Description: New York, NY : Oxford University Press, [2016] | Includes bibliographical references and index. Identifiers: LCCN 2015049222 | ISBN 9780199354474 (pbk. : alk. paper) Subjects: | MESH: Pediatrics—ethics | Bioethical Issues | Child Health—ethics | Patient Rights—ethics | United States Classification: LCC RJ47.8 | NLM WS 21 | DDC 174.2/9892—dc23 LC record available at http://lccn.loc.gov/2015049222 9 8 7 6 5 4 3 2 1 Printed by WebCom, Inc., Canada CONTENTS Acknowledgment ix 1. Children Are Special: Hard Questions, Hard Choices 1 Pediatric Ethics 5 Moral and Legal Status of Children in America 9 The Book 11 2. Ethical Issues in Creating a Child 12 Religious Perspectives on Creating Babies with Medical Assistance 16 Ethical Issues in In Vitro Fertilization (IVF) 18 Research in IVF 18 Cost and Commercialization of IVF 21 Clinician Choice of Patients for IVF 23 Gamete Donation 26 Gamete Storage and Disposition 30 Embryos 32 Preimplantation Genetic Diagnosis 33 Gestational Surrogacy 36 Final Thoughts 38 Additional Readings 40 3. Ethical Issues in Giving Birth to a Baby 41 Term Delivery 45 Preterm Delivery 50 The Threshold of Viability 50 Late-P reterm Delivery 52 Do- Not- Resuscitate Orders in the Delivery Room 53 Maternal Catastrophe and Brain Death 55 Behaviors During Pregnancy That Jeopardize the Fetus 58 Final Thoughts 59 Additional Readings 60 4. Ethical Issues in Neonatal Intensive Care 61 A Brief History of Decision- Making for Critically Ill Neonates 64 Infant Bioethics Committees 69 Ethical Analysis in Neonatal Intensive Care 71 The Window of Opportunity 77 Is Neonatal Care Experimental? 79 Cost and Neonatal Care 80 Final Thoughts 81 Additional Readings 82 5. Ethical Issues in Genetic Testing and Screening in Children 83 Background 85 Genetic Testing and Screening 87 Genetic Exceptionalism 90 Genetic Screening— Unique Issues in Children 91 Screening for Adult- Onset Diseases 92 Newborn Screening 94 Newborn Screening— Use of Residual Blood Spots 98 Newborn Screening— Future Directions 101 Biobanking 101 Biobank Institutional Review Boards 103 Biobank— Informed Consent 103 Biobank— Revealing Research Findings 106 Whole Genome or Exome Sequencing 108 Final Thoughts 111 Additional Readings 111 6. Ethical Issues at the End of Life: Caring for Gravely Ill Children 113 Brain Death in Children 117 Organ Donation After Circulatory Death 120 Withholding Versus Withdrawal of Treatment 123 Medically Provided Nutrition and Hydration 124 Pain Management at the End of Life 125 Children as Participants in Planning Care 127 Care of a Dying Child 130 Supporting the Family After the Death of a Child 131 Additional Readings 133 7. Ethical Issues in General Pediatric Practice 134 Parental Refusal of Routine Immunizations 136 Reporting Suspected Child Abuse and Neglect 143 Physician Refusal to Provide Requested Tests or Treatments 145 Physicians as Employees 148 Relationships with Public and Private Insurers 150 [ vi ] Contents Relationships with Industry 151 Final Thoughts 153 Additional Readings 153 8. Ethical Issues in the Care of Adolescents 155 Adolescent Decision- making 158 Confidentiality 161 The Adolescent Alone 162 Homosexual and Transgender Issues 165 Mental Illness, Depression, and Suicide 168 Eating Disorders 172 Final Thoughts 173 Additional Readings 174 9. Ethical Issues in Medical and Surgical Enhancement 175 Medical Enhancement 178 Growth Hormone for Idiopathic Short Stature 179 Growth Attenuation in Children with Profound Developmental Disabilities 183 Psychotropic Drugs 184 Embryo Selection and Genetic Engineering 186 Surgical Enhancement 188 Plastic Surgery in Down Syndrome 189 Limb Lengthening Surgery for Dwarfism 192 Final Thoughts 194 Additional Readings 195 10. Ethical Issues in Research Involving Children 196 Historical Background 197 The National Commission for the Protection of Subjects of Research 202 U.S. Federal Regulations Regarding Research with Children 204 Research Not Involving Greater Than Minimal Risk 206 Research Involving Greater Than Minimal Risk but Presenting the Prospect of Direct Benefit to the Individual Subjects 208 Research Involving Greater- Than- Minimal Risk and No Prospect of Direct Benefit to Individual Subjects, but Likely to Yield Generalizable Knowledge About the Subject’s Disorder or Condition 209 Research Not Otherwise Approvable That Presents an Opportunity to Understand, Prevent, or Alleviate a Serious Problem Affecting the Health and Welfare of Children 210 Minimizing Risk 210 Parental (or Guardian) Permission and Child Assent 211 Contents [ vii ] Wards 214 Incentives, Compensation, Payment 214 Compensation for Injury 216 Special Populations 217 Adolescents 217 Neonates 218 Economically or Educationally Disadvantaged Children 219 Victims of Terror and Trauma 220 Final Thoughts 221 Additional Readings 222 Index 225 [ viii ] Contents ACKNOWLEDGMENT I am grateful to countless patients and their families who have allowed me into their lives during times of serious illness and great distress. My per- sonal values and professional skills were meaningfully affected by these interactions. This book is dedicated to those families, to my colleagues and students who have taught me so much, and to my own family, without whose love and support nothing is possible.
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