Principles and Practice in Biobank Governance

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