File #2363: "2018_Book_ChildrenAsTissueDonors.pdf"
Text
1|Preface|6
1|Related Publications|8
1|Contents|9
1|Abbreviations|13
1|1 Introduction|14
2|Clinical Context|14
3|The HSC Transplant Recipient|15
3|Children as HSC Donors: Interventions and Procedures|16
3|Risks and Outcomes for HSC Donors|17
2|Frameworks Informing This Monograph|20
3|The Relevance of Children’s Rights|20
3|Regulation and Its Forms|25
2|Qualitative Research|25
2|Roadmap of the Monograph|27
2|References|28
1|2 The Ethics of Children Donating Tissue to Another|32
2|Why the Ethical Unease?|32
3|Vulnerability of the Donor Child|33
2|Influencing the Discussion: Major Ethical Theories|37
3|The Ethics of Paternalism|38
3|Interests Arising from Family and Intimate Relationships|45
3|Utilitarian Perspectives|55
3|Recognising the Emerging Autonomy of the Donor Child|57
2|The Special Role of Medical Professionals|66
3|The Moral Responsibility of Medical Professionals|66
2|Conclusion|68
2|References|68
1|3 Ethical Frameworks and Their Influence on Practice|75
2|The Significance and ‘Status’ of a Child Acting as a Donor|75
2|Clinical Narratives of Harm—Complexities and Uncertainties|78
3|The Potential for Physical Harm|78
3|The Potential for Psychological Harm|80
3|The Moral Responsibility of Clinicians—Varied Views on Donor and Recipient Harms|89
3|The Absence of the Best Interests Standard|90
2|Reflections on Parental Decision-Making|91
3|Donor Children Outside the Spotlight of Attention|91
3|The ‘Journey’ of Parents and Their Assessment of Risk|94
3|Parental Pressure on Child Donors and the ‘Expectation’ that Children Will Donate|95
2|The Relevance of the Family Unit|98
3|The Family Unit and Familial Obligation|98
3|The ‘Appropriateness’ of Pressure Being Placed on a Child Donor Within the Family|99
2|Managing the Emerging Autonomy of the Child Donor|100
3|An Expressed Wish to Donate|101
3|Dealing with a Child’s Objection|102
2|Conclusion|107
2|References|108
1|4 Regulation of Child Tissue Donors in the United Kingdom|110
2|Introduction|110
2|The Role of the HTA|110
2|A Note on Children as Organ Donors|112
2|Children as Tissue Donors|113
3|England and Wales|113
3|Scotland|117
2|The Role of the Courts and Best Interests|120
3|The Relevant Test|121
3|Vulnerable Adult Donor Before the Courts|125
2|Child Participation and Best Interests in the Courts|128
3|Representation of Children|130
3|Court Use of a Child’s Views|132
2|Conclusion|132
2|References|134
1|5 Regulation of Child Tissue Donors in Australia|136
2|Introduction|136
2|Ethical Guidelines|137
2|Legislation|140
3|A Note on Children as Organ Donors|140
3|Children as Blood Donors|140
3|Donation of Regenerative Tissue|142
3|Potential Liability of Medical Practitioners Under the Human Tissue Legislation|150
3|Summary of Legislation|152
2|Role of the Courts|152
3|Issues of Jurisdiction|152
3|Applying the Best Interests Test|155
3|Cases Before the Courts|157
3|Key Factors in Australia|162
3|Influence of International Law and Children’s Rights|163
3|Child Participation and Best Interests in the Courts|165
2|Conclusion|168
2|References|170
1|6 Regulation of Child Tissue Donors in the United States|173
2|Introduction|173
2|Professional Ethical Guidelines|174
3|Policy on HSC Donors|175
3|Guidance on Living Solid-Organ Donors|178
2|Legislation|180
2|Role of the Courts|181
3|Court Applications Prior to Removal of Tissue|182
3|Court Applications for Kidney Donation by Children|183
3|Court Applications for Regenerative Tissue Donation|189
3|Representation and Participation in the Courts|194
3|Taking into Account the Child’s View|196
2|Conclusion|197
2|References|198
1|7 Medical Professionals’ Views on Legal and Non-legal Forms of Regulation|201
2|Introduction|201
2|Relationship Between Law and ‘Ethical Practice’|201
3|Law and Ethics as Essential Components or Separate Issues|202
2|The Benefits of the Law|203
3|Using Law to Resolve Disputes and Difficult Situations|204
3|Assisting Others to Focus on the Donor|204
3|Benefits Dependent on Knowledge|206
2|Negative Views About the Law|207
3|Law Viewed as Inflexible, Unnecessary, or Out of Date|207
3|Wishing to Avoid Engaging with the Law|208
3|Alternatives to Engaging with the Law|209
2|Clinicians’ Views Regarding Legal Reform|209
2|Best Practice: International Guidelines, Policies and Standards|210
3|World Medical Association (WMA) and World Health Organization (WHO)|211
3|World Marrow Donor Association (WMDA)|212
3|Worldwide Network for Blood and Marrow Transplantation Association (WNBMT)|213
3|International Accreditation Standards—FACT-JACIE Standards|214
2|Overview of Guidelines, Policies and Standards|217
2|Medical Professionals’ Views Regarding Key Recommendations in Guidelines, Policies and Standards|217
3|Interactions with the Donor Child|217
3|Support for the Requirement for Independent Medical Professionals|219
3|Support for and Recognition of the Value of a ‘Process’ Focusing on the Donor Child|223
2|Medical Professionals’ Views of the Role of Guidelines, Policies and Standards|224
2|Accreditation Standards as Drivers in Practice|227
3|Influence of Accreditation Standards|227
3|Accreditation Standards Sufficient as Regulation?|228
2|Conclusion|230
2|References|230
1|8 Conclusion|233
2|Some Proposals to Refocus Attention on Donor Children|233
2|Regulating Donation: Recognising the Value of Donor Focused Processes|234
3|Separate Medical Professionals|236
3|Donor Child Supports|236
3|Mechanisms to Ensure the Child’s Voice Is Heard|237
2|What the Law Should Require in Relation to Child Donors|239
3|Cognitively Disabled Children|239
3|Mature Children|240
3|Immature Children|241
2|Access to, and Issues in, the Courts|242
3|Applying the Best Interests Test|242
2|Concluding Comments|249
2|References|249
1|Appendix Qualitative Study Methodology and Analysis|253
1|Methodology|253
1|Procedure and Analysis|254
1|Related Publications|8
1|Contents|9
1|Abbreviations|13
1|1 Introduction|14
2|Clinical Context|14
3|The HSC Transplant Recipient|15
3|Children as HSC Donors: Interventions and Procedures|16
3|Risks and Outcomes for HSC Donors|17
2|Frameworks Informing This Monograph|20
3|The Relevance of Children’s Rights|20
3|Regulation and Its Forms|25
2|Qualitative Research|25
2|Roadmap of the Monograph|27
2|References|28
1|2 The Ethics of Children Donating Tissue to Another|32
2|Why the Ethical Unease?|32
3|Vulnerability of the Donor Child|33
2|Influencing the Discussion: Major Ethical Theories|37
3|The Ethics of Paternalism|38
3|Interests Arising from Family and Intimate Relationships|45
3|Utilitarian Perspectives|55
3|Recognising the Emerging Autonomy of the Donor Child|57
2|The Special Role of Medical Professionals|66
3|The Moral Responsibility of Medical Professionals|66
2|Conclusion|68
2|References|68
1|3 Ethical Frameworks and Their Influence on Practice|75
2|The Significance and ‘Status’ of a Child Acting as a Donor|75
2|Clinical Narratives of Harm—Complexities and Uncertainties|78
3|The Potential for Physical Harm|78
3|The Potential for Psychological Harm|80
3|The Moral Responsibility of Clinicians—Varied Views on Donor and Recipient Harms|89
3|The Absence of the Best Interests Standard|90
2|Reflections on Parental Decision-Making|91
3|Donor Children Outside the Spotlight of Attention|91
3|The ‘Journey’ of Parents and Their Assessment of Risk|94
3|Parental Pressure on Child Donors and the ‘Expectation’ that Children Will Donate|95
2|The Relevance of the Family Unit|98
3|The Family Unit and Familial Obligation|98
3|The ‘Appropriateness’ of Pressure Being Placed on a Child Donor Within the Family|99
2|Managing the Emerging Autonomy of the Child Donor|100
3|An Expressed Wish to Donate|101
3|Dealing with a Child’s Objection|102
2|Conclusion|107
2|References|108
1|4 Regulation of Child Tissue Donors in the United Kingdom|110
2|Introduction|110
2|The Role of the HTA|110
2|A Note on Children as Organ Donors|112
2|Children as Tissue Donors|113
3|England and Wales|113
3|Scotland|117
2|The Role of the Courts and Best Interests|120
3|The Relevant Test|121
3|Vulnerable Adult Donor Before the Courts|125
2|Child Participation and Best Interests in the Courts|128
3|Representation of Children|130
3|Court Use of a Child’s Views|132
2|Conclusion|132
2|References|134
1|5 Regulation of Child Tissue Donors in Australia|136
2|Introduction|136
2|Ethical Guidelines|137
2|Legislation|140
3|A Note on Children as Organ Donors|140
3|Children as Blood Donors|140
3|Donation of Regenerative Tissue|142
3|Potential Liability of Medical Practitioners Under the Human Tissue Legislation|150
3|Summary of Legislation|152
2|Role of the Courts|152
3|Issues of Jurisdiction|152
3|Applying the Best Interests Test|155
3|Cases Before the Courts|157
3|Key Factors in Australia|162
3|Influence of International Law and Children’s Rights|163
3|Child Participation and Best Interests in the Courts|165
2|Conclusion|168
2|References|170
1|6 Regulation of Child Tissue Donors in the United States|173
2|Introduction|173
2|Professional Ethical Guidelines|174
3|Policy on HSC Donors|175
3|Guidance on Living Solid-Organ Donors|178
2|Legislation|180
2|Role of the Courts|181
3|Court Applications Prior to Removal of Tissue|182
3|Court Applications for Kidney Donation by Children|183
3|Court Applications for Regenerative Tissue Donation|189
3|Representation and Participation in the Courts|194
3|Taking into Account the Child’s View|196
2|Conclusion|197
2|References|198
1|7 Medical Professionals’ Views on Legal and Non-legal Forms of Regulation|201
2|Introduction|201
2|Relationship Between Law and ‘Ethical Practice’|201
3|Law and Ethics as Essential Components or Separate Issues|202
2|The Benefits of the Law|203
3|Using Law to Resolve Disputes and Difficult Situations|204
3|Assisting Others to Focus on the Donor|204
3|Benefits Dependent on Knowledge|206
2|Negative Views About the Law|207
3|Law Viewed as Inflexible, Unnecessary, or Out of Date|207
3|Wishing to Avoid Engaging with the Law|208
3|Alternatives to Engaging with the Law|209
2|Clinicians’ Views Regarding Legal Reform|209
2|Best Practice: International Guidelines, Policies and Standards|210
3|World Medical Association (WMA) and World Health Organization (WHO)|211
3|World Marrow Donor Association (WMDA)|212
3|Worldwide Network for Blood and Marrow Transplantation Association (WNBMT)|213
3|International Accreditation Standards—FACT-JACIE Standards|214
2|Overview of Guidelines, Policies and Standards|217
2|Medical Professionals’ Views Regarding Key Recommendations in Guidelines, Policies and Standards|217
3|Interactions with the Donor Child|217
3|Support for the Requirement for Independent Medical Professionals|219
3|Support for and Recognition of the Value of a ‘Process’ Focusing on the Donor Child|223
2|Medical Professionals’ Views of the Role of Guidelines, Policies and Standards|224
2|Accreditation Standards as Drivers in Practice|227
3|Influence of Accreditation Standards|227
3|Accreditation Standards Sufficient as Regulation?|228
2|Conclusion|230
2|References|230
1|8 Conclusion|233
2|Some Proposals to Refocus Attention on Donor Children|233
2|Regulating Donation: Recognising the Value of Donor Focused Processes|234
3|Separate Medical Professionals|236
3|Donor Child Supports|236
3|Mechanisms to Ensure the Child’s Voice Is Heard|237
2|What the Law Should Require in Relation to Child Donors|239
3|Cognitively Disabled Children|239
3|Mature Children|240
3|Immature Children|241
2|Access to, and Issues in, the Courts|242
3|Applying the Best Interests Test|242
2|Concluding Comments|249
2|References|249
1|Appendix Qualitative Study Methodology and Analysis|253
1|Methodology|253
1|Procedure and Analysis|254