Pediatric Bioethics

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