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Governing Biobanks: Understanding the Interplay between Law and Practice

Autor Jane Kaye, Susan Gibbons, Catherine Heeney Editat de Michael Parker Autor Dr Andrew Smart
en Limba Engleză Paperback – 2 feb 2012
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.
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Specificații

ISBN-13: 9781841139050
ISBN-10: 184113905X
Pagini: 380
Dimensiuni: 156 x 234 x 17 mm
Greutate: 0.59 kg
Ediția:New.
Editura: Bloomsbury Publishing
Colecția Hart Publishing
Locul publicării:London, United Kingdom

Caracteristici

This book critically examines the current governance structures in place for biobanks in England and Wales.Using a socio-legal approach, including interview data gathered from the scientific community, the book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future.This clear and comprehensive book will be an extremely useful tool for all those dealing with biobanks in a practical sense and will also be relevant to academics with an interest in the field.

Notă biografică

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 Filosofía, Consejo Superior de Investigaciones Científicas, 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.

Cuprins

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 Governance-The 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

Descriere

Using interview data this book provides unique insights and makes recommendations about the governance of biobanking in the future.