The sequencing of the entire human genome has opened up unprecedented possibilities for healthcare, but also ethical and social dilemmas about how these can be achieved, particularly in developing countries. UNESCO’s Bioethics Programme was established to address such issues in 1993. Since then, it has adopted three declarations on human genetics and bioethics (1997, 2003 and 2005), set up numerous training programmes around the world and debated the need for an international convention on human reproductive cloning.

Negotiating Bioethics presents Langlois’ research on the negotiation and implementation of the three declarations and the human cloning debate, based on fieldwork carried out in Kenya, South Africa, France and the UK, among policy-makers, geneticists, ethicists, civil society representatives and industry professionals. The book examines whether the UNESCO Bioethics Programme is an effective forum for (a) decision-making on bioethics issues and (b) ensuring ethical practice. Considering two different aspects of the UNESCO Bioethics Programme – deliberation and implementation – at international and national levels, Langlois explores:

• how relations between developed and developing countries can be made more equal;
• who should be involved in global level decision-making and how this should proceed;
• how overlap between initiatives can be avoided;
• what can be done to improve the implementation of international norms by sovereign states;
• how far universal norms can be contextualized;
• what impact the efficacy of national level governance has at international level.

Drawing on extensive empirical research, Negotiating Bioethics presents a truly global perspective on bioethics. The book will be of interest to students and scholars of sociology, politics, science and technology studies, bioethics, anthropology, international relations and public health.

Contents

• Foreword
• Acknowledgements
• Abbreviations
• 1. Introduction
• 2. Bioethics: Human genetic and biomedical research ethics at UNESCO and beyond
  • Bioethics
  • Genetics and genomics
  • The UNESCO Bioethics Programme
  • UNESCO and human cloning
• 3. Global governance: A conceptual framework for analysing bioethics at UNESCO
  • Global governance
  • The deliberative process: representation, legitimacy and accountability
  • The implementation process: realizing and enforcing norms
  • Application to the UNESCO Bioethics Programme
• 4. Deliberating bioethics: UNESCO’s standard-setting activities
  • The infrastructure of the UNESCO Bioethics Programme
  • Drafting and negotiating the declarations
  • The human cloning debate
• 5. Implementing bioethics: UNESCO’s efforts to realize and enforce the declarations
  • The nature and content of the declarations
  • Implementation and enforcement
  • The lack of universal norms on cloning
• 6. Contextualizing bioethics: The declarations in Kenya and South Africa
  • Negotiations at national level
  • Perceptions of UNESCO in Kenya and South Africa
  • Adoption of the UNESCO declarations in Kenya and South Africa
• 7. Contextualizing bioethics: Mapping progress in Kenya and South Africa
  • UNESCO bioethics activities in Kenya
  • Views on UNESCO’s capacity-building activities
  • Ongoing ethics issues
• 8. Conclusion
  • Deliberation
  • Implementation
  • Kenya and South Africa
  • The governance of human cloning
  • Pragmatic suggestions
• Appendix. Interviews
• References

Adèle Langlois is Senior Lecturer in Politics and International Relations at the University of Lincoln. She has conducted fieldwork in India, Kenya and South Africa. Her research interests include the regulation of human genetic and biomedical research, polio eradication and normative theories of global governance.

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