Pediatric Bioethics

This volume offers a theoretical and practical overview of the ethics of pediatric medicine. It serves as a fundamental handbook and resource for pediatricians, nurses, residents in training, graduate students, and practitioners of ethics and healthcare policy. Written by a team of leading experts, Pediatric Bioethics addresses those difficult ethical questions concerning the clinical and academic practice of pediatrics, including an approach to recognizing boundaries when confronted with issues such as end of life care, life-sustaining treatment, extreme prematurity, pharmacotherapy, and research. Thorny topics such as what constitutes best interests, personhood, or distributive justice and public health concerns such as immunization and newborn genetic screening are also addressed. Half-title......Page 3 Title......Page 5 Copyright......Page 6 Dedication......Page 7 Contents......Page 9 Contributors......Page 11 Preface......Page 15 A The Foundation: Theory and Principles......Page 17 Virtue Ethics Revisited......Page 19 Virtue Ethics and Medicine......Page 21 Goals......Page 22 The Cardinal Virtues......Page 23 References......Page 26 Introduction......Page 27 The Origins of the Ethical Concept of the Physician as Fiduciary of the Patient......Page 28 The Ethical Concept of Parents As Fiduciaries of Their Child Who is a Patient......Page 33 Clinical Implications of the Ethical Concept of Pediatricians and Parents As Co-Fiduciaries of Pediatric Patients......Page 34 References......Page 36 3 Using the Best-Interests Standard in Treatment Decisions for Young Children......Page 38 Rejecting interpretations of the best-interests standard requiring what is ideal......Page 40 Analyzing the best-interests standard in terms of what is reasonable......Page 41 CAPTA's Baby Doe Rules: a Challenge to the Best-Interests Standard......Page 44 One Standard for Persons of All Ages......Page 46 Moral Requirements......Page 47 Justice......Page 48 Compassion......Page 49 Conclusion......Page 51 References......Page 52 The moral status of children and parents......Page 54 The legal status of children and parents......Page 59 References......Page 68 Historical Perspectives......Page 70 Regulations on Pediatric Research......Page 72 Competence, Permission, and Assent......Page 75 Informing Parents and Children about Research......Page 77 The Responsibility of Investigators and IRBs......Page 78 Adolescents......Page 79 Wards......Page 81 Payments for Participation in Research......Page 82 References......Page 86 Introduction......Page 89 Scenario 1: When Information May Harm and Not Help – SUDEP......Page 91 Scenario 2: HIV and Family Secrets......Page 92 Scenario 3: Knowledge of Self and Self-Identity – Turner Syndrome......Page 93 Cultural Context of Truth Telling......Page 94 Truth Telling and the Dying Child......Page 96 Truth Telling in Pediatrics – Recommendations and Summary......Page 98 References......Page 99 Introduction......Page 103 Ethics Committees: What They Are and Why They Exist......Page 104 Ethics Committees: What They Are Not......Page 105 How Pediatric Ethics Committees Differ from Adult Ethics Committees......Page 106 Structure: Pediatric Ethics Committee Membership......Page 108 Case Consultation: Access and Indications......Page 112 Case Consultation: Three Models......Page 114 Case Consultation: Whom to Invite......Page 115 Case Consultation: The Meeting......Page 116 Chairing a Case Consultation......Page 118 Consultation Follow-Up and Evaluation......Page 119 Education......Page 120 Internal Support for the Pediatric Ethics Committee......Page 121 External Support and Resources for the Pediatric Ethics Committee......Page 122 References......Page 123 B Genetics and the Newborn......Page 125 Introduction......Page 127 PKU: The Paradigmatic Public Health Emergency Program......Page 129 Case Study: NBS for Duchenne muscular dystrophy......Page 130 Case study: The Identification of Sickle Cell Trait and Cystic Fibrosis Carriers......Page 132 The impact of Methodology on NBS public health programs......Page 134 The role of consent in newborn screening......Page 135 References......Page 137 9 Presymptomatic Genetic Testing in Children......Page 141 Conclusion......Page 151 References......Page 152 10 Extreme Prematurity: Truth and Justice......Page 157 References......Page 162 11 Disorders of Sex Development......Page 165 References......Page 177 C Therapies......Page 179 12 Rationality, Personhood, and Peter Singer on the Fate of Severely Impaired Infants......Page 181 13 The Ethics of Controlling Reproduction in a Population with Mental Disabilities......Page 189 Parental Prerogatives Versus Rights to Reproductive Privacy......Page 190 Abortion as Contraception......Page 192 Sterilization......Page 193 Ashley X: The Pillow Angel......Page 198 Conclusion......Page 199 References......Page 200 Existing Protections......Page 202 Identifying Innovations as Research......Page 204 The Moral Problem......Page 206 Safety and Efficacy......Page 209 Ulterior motives......Page 210 References......Page 215 15 Conjoined Twins......Page 219 References......Page 232 Moral justification for immunization......Page 235 Known and perceived harm caused by immunization......Page 236 Law, policy, and parental preference: the ethics of vaccine refusal and public health......Page 240 Conclusion......Page 243 References......Page 244 Validity of ADHD Diagnosis......Page 247 Treatment of ADHD......Page 248 Is ADHD Real?......Page 249 Ethical Implications for children......Page 250 Social Influences in Stimulant Drug Treatment for Children......Page 252 Coercive Factors Influencing the Request for ADHD Diagnosis and Drug Treatment......Page 253 Marketing Influences......Page 254 Expanding the notion of side effects and involving children in follow-up care......Page 255 Conclusion......Page 256 References......Page 257 D End of life......Page 261 18 Brain Death, Minimal Consciousness, and Vegetative States in Children......Page 263 The Permanent Vegetative State......Page 268 The Minimally Conscious State......Page 273 References......Page 274 19 The Forgoing of Life-Sustaining Treatment for Children......Page 278 Conclusion......Page 297 References......Page 298 Index......Page 301 Virtues and goals in pediatrics / G. Kevin Donovan and Edmund D. Pellegrino -- Contributions of ethical theory to pediatric ethics : parents as co-fiduciaries of pediatrics patients / Laurence B. McCullough -- Using the best interests standards in treatment decisions for young children / Loretta M. Kopelman -- Moral and legal status of children and parents / Sadath A. Sayeed -- The ethics of pediatric research / Jonathan D. Moreno and Alexandra Kravitt -- Truth telling in pediatrics : what they don't know might hurt them / Christine Harrison -- Pediatric ethics committees / Mark R. Mercurio -- Newborn screening / Lainie Friedman Ross -- Presymptomatic genetic testing in children / Kimberly A. Quaid -- Extreme prematurity : truth and justice / Geoffrey Miller -- Disorders of sex development / Alice D. Dreger and David Sandberg -- Rationality, personhood, and Peter Singer on the fate of severely impaired infants / Eva Feder Kittay -- The ethics of controlling reproduction in a population with mental disabilities / Paul A. Lombardo -- Pediatric innovative surgery / Angelique M. Reitsma -- Conjoined twins / Alice D. Dreger and Geoffrey Miller -- Ethics and immunization / Joel E. Frader and Erin Flanagan-Klygis -- Psychotropic drug use in children : the case of stimulants / Ilina Singh -- Brain death, minimal consciousness, and vegetative states in children / Geoffrey Miller and Stephen Ashwal -- The foregoing of life sustaining treatment for children / Sadath A. Sayeed and Geoffrey Miller

This volume offers a theoretical and practical overview of the ethics of pediatric medicine. It will serve as a fundamental handbook and resource for pediatricians, nurses, residents in training, graduate students, and practitioners of ethic and health care policy. Written by a team of leading experts, Pediatric Bioethics addresses those difficult ethical questions concerning the clinical and academic practice of pediatrics, including an approach to recognizing boundaries when one is confronted with such issues as end-of-life care, life-sustaining treatment, extreme prematurity, pharmacotherapy, and research. Thorny topics, such as what constitutes best interests, personhood, or distributive justice, and public health concerns, such as immunization and newborn genetic screening are also addressed.