Children's Bioethics: The International Biopolitical Discourse on Harmful Traditional Practices and the Right of the Child to Cultural Identity Book

Acknowledgments xi

List of Abbreviations and Acronyms xiii

Introduction xv

Chapter 1 Using International Human Rights Framework to Study Bioethics 1

A International Human Rights and Bioethics: An Inxtricable Connection 1

B Medical Cultures 2

1 Historical Context 2

2 The Principlism Approach and Its Critique 3

C Children, Bioethics, and Medical Culture 7

1 Children, Body, and Culture 8

2 Children's Bioethics 10

D Children's Bioethics and the Question of Agency 16

1 Children and Social Agency 16

2 Children, Citizenship, and Participation 18

3 Children's Agency and Bioethics 19

E Conclusion 22

Chapter 2 Children's Bioethics in the Convention on the Rights of the Child: Historical Overview of the Drafting Process 25

A Drafting the Children's Convention 27

B The Innovative Creed of the Children's Convention 29

C Drafting Children's Bioethics into the Children's Convention 33

1 Scope of the Study 33

2 Difficulties with the Process of Categorization 33

D Categories of Biomedical Practices 36

1 Informed Consent 36

a Respect for Children's Views on Medical Treatment 36

b Informed Consent, Medical Treatment, and Experimentation 38

2 Harmful Traditional Practices 41

a Female Circumcision 42

b Experimentation, Scientific Developments, and Genetic Manipulation 45

c Medicalization, Drugs, and Children 47

E Who Won, Who Lost? 49

1 Children's Bioethics in View of the Children's Convention's Holistic Approach 52

2 Children's Bioethics in View of the Children's Convention's Innovative Creed: Children's Development, Agency, and Right to Identity 55

a Right to Life, Survival, and Development 56

b Children's Agency 56

c TheChild's Right to Identity 57

3 Children's Bioethics in View of the Children's Committee's Jurisprudence 59

4 Other International Instruments Addressing Children's Bioethics 62

F Conclusion 65

Chapter 3 Traditional Bodily Practices: Case Studies 67

A Case Selection 67

B Traditional Body Practices: Background and Context 70

1 Male Circumcision 70

2 Tribal Marks 75

a Tatooing 76

b Scarification 77

3 Milk Teeth Extraction 79

4 Neck Elongation: The Case of the "Padaung Girls" 85

C Conclusion 89

Chapter 4 Children's Bioethics and the Framework of Analysis 91

A Theoretical Framework of Human Rights 94

1 Group Rights and Human Rights 94

2 Group Rights and Children 99

B Bodily Practices and Cultural Conflicts 105

1 Cultural Bodily Encounters on the National Level 105

2 Evaluating Cultural Bodily Practices on the International Level 110

a The Majority/Minority Rule on the International Level: An Acceptable Analogy? 110

b International Cross-Cultural Evaluation, Bodily Practices, and Imperialism 111

C Conclusion 116

Chapter 5 Biomedical Practices and the Child: Rights in Question 119

A Abuse and Neglect 120

B Torture, Cruel, Inhuman, and Degrading Treatment 127

C Freedom from Violence 131

D Freedom of Thought, Conscience, and Religion 134

1 Children's Religious Freedom as an Autonomous Right 136

2 Children's Views of Religion 139

E Informed Consent 140

1 Doctrine of Informed Consent-Historical Context 140

2 Children's Religio-Cultural Bodily Practices and Informed Consent 144

F Conclusion 149

Chapter 6 Rights Discourse, Children, and Bioethics 153

A Culture, Cultural Rights, and Cultural Identity 154

B Biomedical Practices as Cultural Rights 158

C Children as Bearers of (Biomedical) Cultural Rights 163

1 Do Children Have Rights? 165

2 The Relational Approach/Ethic of Care 169

a The Relational Approach and Children's Bioethics 172

b Arguments against the Relational Approach 176

D Children's Cultural Identity 177

1 The Child's Right to Identity under the Children's Convention 181

2 The Children's Committee Analysis 182

3 Children as a Minority Group 186

E Children's Bioethics in Practice 187

1 State Responsibilities to "Respect, Protect, and Fulfill" 188

2 State Responsibilities and the Child's Right to Biomedical Identity: A Dual Model 189

F Conclusion 195

Chapter 7 Broadening the Lens: Genetic Manipulation 197

A Genetic Manipulations 198

B Why Disability-Related Practices? 199

C Genetic Selection of Children's Characteristics: A Part of Parental Reproductive Freedom? 202

D Scientific Progress and Children 207

1 Status of the Fetus under International Law 208

E The Child's "Right to a Sound Mind and Body" 211

1 Are Genetic Interventions for Disability-Related Reasons Medically Justified? 213

2 "Disabled Identity"? 215

3 Purposeful Parental Selection for and against Disability-A Valid Comparison? 220

F Conclusion 224

Chapter 8 Conclusion 227

A Considerations under the Physical Path 233

B Considerations under the Identity Path 237

C Resolution of Biomedical Conflicts 240

1 Majority's Biomedical Practices 241

2 Minority's Biomedical Practices 242

3 Mixed Minority/Majority Biomedical Practices 246

4 Genetic Manipulation, Disability, and Deafness by Choice 247

D Children's Bioethics: A Reevaluation 249

Bibliography 251

Court Cases 251

International Documents 251

Sources 257

Index 281