Jane Kaye, Susan Gibbons, Catherine Heeney, Andrew Smart

Governing Biobanks (eBook, ePUB)

Understanding the Interplay between Law and Practice
Redaktion: Parker, Michael

• Format: ePub

Produktbeschreibung

Biobanks are proliferating rapidly worldwide because they are powerful tools and organisational structures for undertaking medical research. By linking samples to data on the health of individuals, it is anticipated that biobanks will be used to explore the relationship between genes, environment and lifestyle for many diseases, as well as the potential of individually-tailored drug treatments based on genetic predisposition. However, they also raise considerable challenges for existing legal frameworks and research governance structures. This book critically examines the current governance structures in place for biobanks in England and Wales. It shows that the technologies, techniques and practices involved in biobanking do not always conform neatly to existing legal principles and frameworks that apply to other areas of medical research. Using a socio-legal approach, including interview data gathered from the scientific community, this book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future. It also explores the issues around the secondary use of information, such as consent and how to protect privacy, when biobanks are accessed by a number of different third parties. These issues have relevance both within England and Wales and to a wide international audience, as well as for other areas where large datasets are used.

Produktdetails

• Verlag: Bloomsbury UK eBooks
• Seitenzahl: 380
• Erscheinungstermin: 3. Februar 2012
• Englisch
• ISBN-13: 9781847318848
• Artikelnr.: 41510706

Autorenporträt

Jane Kaye is Director of the Centre for Health, Law and Emerging Technologies, University of Oxford.

Inhaltsangabe

Part I Setting the Scene 1. From an Idea to a Project Jane Kaye, Susan MC
Gibbons, Catherine Heeney, Michael Parker and Andrew Smart 2. Embedding
Biobanks in a Changing Context Jane Kaye Part II Key Legal and Sociological
Findings 3. Mapping the Regulatory Space Susan MC Gibbons 4. Dynamic
Networks of Practice Catherine Heeney 5. Governance in Practice: Patterns
of Awareness and Engagement Susan MC Gibbons and Andrew Smart 6. General
Attitudes to Governance Susan MC Gibbons and Andrew Smart 7. Attitudes to
Particular Laws and Governing Bodies Susan MC Gibbons and Andrew Smart 8.
Preferences for Governance Susan MC Gibbons and Andrew Smart 9. Enacting
Governance-The Case of Access Catherine Heeney and Andrew Smart Part III
Reflections, Ramifications and Recommendations 10. Reflections on Practice
and Governance Jane Kaye 11. Ethics and the Governance of Biobanks
Catherine Heeney and Michael Parker 12. Conclusions Jane Kaye, Susan MC
Gibbons, Catherine Heeney, Michael Parker and Andrew Smart