Principles and Practice in Biobank Governance

Jane Kaye is Wellcome Trust Fellow in Medical Law at the Ethox Centre, University of Oxford, UK Mark Stranger has taught sociology and worked as Senior Research Fellow and Executive Director at the Centre for Law and Genetics, University of Tasmania, Australia. He is the author of Surfing Life: Surface, Substructure and the Commodification of the Sublime.

List of Figures and Table, Notes on Contributors, Acknowledgements, Governing Biobanks: An Introduction, Part 1. Benefit Sharing, 1. What Benefit Sharing Arrangements do People Want from Biobanks? A Survey of Public Opinion in Australia, 2. Reconsidering Altruism, Introducing Reciprocity and Empowerment in the Governance of Biobanks, 3. From Benefit Sharing to Power Sharing: Partnership Governance in Population Genomics Research, Part 2. Consent, 4. Co-determination of Donors in Biobanks, 5. Developing an Appropriate Consent Model for Biobanks: In Defence of ‘Broad’ Consent, 6. Consent by Research Ethics Committees: The New Law on Biomedical Research in Spain, 7. Addressing the Ethical Objections to Pediatric Biobanks, 8. Deciding Whether to Participate in a Biobank: The Concerns of Healthy Volunteers, Part 3. Privacy and Access, 9. Privacy Interests in Biobanking: A Preliminary View on a European Perspective, 10. Feeding back Significant Findings to Participants and Relatives, 11. Ensuring Participant Privacy in Networked Biobanks, 12. hSERN: A Tool to Help Researchers with the Legal Requirements of Cross-border Exchange of Biological Material, 13. Biobanking Networks – What are the Governance Challenges?, Part 4. Governing Bodies, 14. Potential Conflicts in Governance Mechanisms used in Population Biobanks, 15. UK Biobank Ethics and Governance Council: An Exercise in Added Value, 16. The End of Individual Control Over Health Information: Promoting Fair Information Practices and the Governance of Biobank Research, 17. From Public Inquiry to Policy: Biobanks, Population Genetics and the Public Interest, Index