基本説明
This book combined theoretical and empirical research to analyse the areas of conflict and consensus in the regulatory and ethical frameworks that have been developed to govern biobanks.
Full Description
Rapid technological advances, the establishment of large-scale biobanks, and the exchange of data across international boundaries raise a variety of questions for regulators struggling with the problem of how to govern such stores of information and the processes connected with them. Engaging with the pressing issues of privacy, consent, access to data, and benefit sharing, Principles and Practice in Biobank Governance draws together the latest empirical research from the UK, Europe, America, Australia and Asia to focus on these challenges. Current models of governance are critiqued, principles and policies are debated, and new models and theoretical frameworks are presented through this intellectually stimulating, informative volume. This truly international volume offers new insights from a range of disciplinary perspectives and will be essential reading for policy makers and scholars across a range of social sciences, including sociology, bioethics, law and social policy.
Contents
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
