Mark Stranger

Principles and Practice in Biobank Governance (eBook, PDF)

Redaktion: Kaye, Jane

• Format: PDF

Produktbeschreibung

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. 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.

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Produktdetails

• Verlag: Taylor & Francis
• Seitenzahl: 316
• Erscheinungstermin: 15. April 2016
• Englisch
• ISBN-13: 9781317075882
• Artikelnr.: 49350591

Autorenporträt

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.

Inhaltsangabe

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