Negotiating bioethics

Front matter

The governance of UNESCO's Bioethics Programme

Adéle Langlois

Negotiating Bioethics

Introduction

Bioethics: human genetic and biomedical research ethics at UNESCO and beyond

Genetics and genomics 9

The UNESCO Bioethics Programme 14 UNESCO and human cloning 19

Global governance: a conceptual framework for analysing bioethics at UNESCO

Global governance 30 The deliberative process: representation, legitimacy and accountability 34 The implementation process: realizing and enforcing norms 37 Application to the UNESCO Bioethics Programme 42

Deliberating bioethics: UNESCO’s standard-setting activities

The infrastructure of the UNESCO Bioethics Programme 45 Drafting and negotiating the declarations 47 The human cloning debate 57

Contents

Implementing bioethics: UNESCO’s efforts to realize and enforce the declarations

The nature and content of the declarations 65 Implementation and enforcement 71 The lack of universal norms on cloning 93

Contextualizing bioethics: the declarations in Kenya and South Africa

Negotiations at national level 96 Perceptions of UNESCO in Kenya and South Africa 101 Adoption of the UNESCO declarations in Kenya

and South Africa 105

Contextualizing bioethics: mapping progress in Kenya and South Africa

UNESCO bioethics activities in Kenya 120 Views on UNESCO 5 capacity-building activities 121 Ongoing ethics issues 124

Conclusion

Deliberation 143

Implementation 149

Kenya and South Africa 154

The governance of human cloning 155 Pragmatic suggestions 156

Appendix: interviews Notes

Index

157 160 161 185

Tables

4.1

5.1 5.2 6.1

Number of member states attending the April and

June 2005 IGE meetings, by regional group 50 Use of GEObs, 2005 to 2012 77 Number of entries in GEObs, 2007 to 2012 78

Promulgation of sections 68 and 71 of the National Health Act 116