Governing Biobanks

Understanding the Interplay Between Law and Practice
1. Auflage 2012
ISBN: 978-1-84113-905-0
Verlag: Bloomsbury 3PL

Buch, Englisch, 380 Seiten, Format (B × H): 156 mm x 234 mm, Gewicht: 582 g

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.

Autoren/Hrsg.

Kaye, Jane

Gibbons, Susan M

Gibbons, Susan

Heeney, Catherine

Parker, Michael

Fachgebiete

• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Medizinrecht, Gesundheitsrecht
• Rechtswissenschaften Ausländisches Recht Common Law (UK, USA, Australien u.a.)

Inhaltsverzeichnis

Part I Setting the Scene1. From an Idea to a Project Jane Kaye, Susan MC Gibbons, Catherine Heeney, Michael Parker and Andrew Smart2. Embedding Biobanks in a Changing Context Jane KayePart II Key Legal and Sociological Findings3. Mapping the Regulatory Space Susan MC Gibbons4. Dynamic Networks of Practice Catherine Heeney5. Governance in Practice: Patterns of Awareness and Engagement Susan MC Gibbons and Andrew Smart6. General Attitudes to Governance Susan MC Gibbons and Andrew Smart7. Attitudes to Particular Laws and Governing Bodies Susan MC Gibbons and Andrew Smart8. Preferences for Governance Susan MC Gibbons and Andrew Smart9. Enacting GovernanceThe Case of Access Catherine Heeney and Andrew SmartPart III Reflections, Ramifications and Recommendations10. Reflections on Practice and Governance Jane Kaye11. Ethics and the Governance of Biobanks Catherine Heeney and Michael Parker12. Conclusions Jane Kaye, Susan MC Gibbons, Catherine Heeney, Michael Parker and Andrew Smart

Über Autor(innen)

Gibbons, Susan
Susan M C Gibbons is Senior Research Associate in Law, Ethox Centre, University of Oxford.

Parker, Michael
Michael Parker is Professor of Bioethics and Director of the Ethox Centre, University of Oxford.

Heeney, Catherine
Catherine Heeney is a JAE.Doc within the Instituto de Filosofía, Consejo Superior de Investigaciones Científicas, Madrid and a Research Associate of Ethox Centre, University of Oxford.

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

Jane Kaye is Director of the Centre for Health, Law and Emerging Technologies, University of Oxford.Susan MC Gibbons is Senior Research Associate in Law, Ethox Centre, University of Oxford.Catherine Heeney is a JAE.Doc within the Instituto de Filosofia, Consejo Superior de Investigaciones Cientificas, Madrid and a Research Associate of Ethox Centre, University of Oxford. Michael Parker is Professor of Bioethics and Director of the Ethox Centre, University of Oxford.Andrew Smart is a Senior Lecturer in Sociology at Bath Spa University.