About the Book
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.
Table of 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
About the Author :
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.
Review :
'From empirical data to conceptual analysis, and from assessment of public opinion to recommendations for policy, Kaye and Stranger have managed to pack a lot into this edited volume that will please researchers, policy makers and lay readers alike. It is a much needed collection that lives up to its offer to provide principles and practice for biobank governance.' Eric M. Meslin, Indiana University Center for Bioethics, USA 'The governance of biobanks is a major ethical issue of our time. This volume combines the latest empirical findings with an international blend of scientific, ethical, legal and sociological expertise, resulting in a comprehensive critique of current practice and focused suggestions for future development. Helpfully jargon-free, it should be a major resource for biobank planners, funders, administrators, users - and participants.' Alastair Campbell, National University of Singapore, Singapore
