Governing biobanks : understanding the interplay between law and practice / by Jane Kaye ... [and others].
2012
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Details
Title
Governing biobanks : understanding the interplay between law and practice / by Jane Kaye ... [and others].
Added Author
Imprint
Oxford [England] ; Portland, Or. : Hart Pub., 2012.
Description
1 online resource (x, 370 p.)
Formatted Contents Note
From an idea to a project / Jane Kaye ... [et al.]
Embedding biobanks in a changing context / Jane Kaye
Mapping the regulatory space / Susan M.C. Gibbons
Dynamic networks of practice / Catherine Heeney
Governance in practice : patterns of awareness and engagement / Susan M.C. Gibbons and Andrew Smart
General attitudes to governance / Susan M.C. Gibbons and Andrew Smart
Attitudes to particular laws and governing bodies / Susan M.C. Gibbons and Andrew Smart
Preferences for governance / Susan M.C. Gibbons and Andrew Smart
Enacting governance : the case of access / Catherine Heeney and Andrew Smart
Reflections on practice and governance / Jane Kaye
Ethics and the governance of biobanks / Catherine Heeney and Michael Parker.
Embedding biobanks in a changing context / Jane Kaye
Mapping the regulatory space / Susan M.C. Gibbons
Dynamic networks of practice / Catherine Heeney
Governance in practice : patterns of awareness and engagement / Susan M.C. Gibbons and Andrew Smart
General attitudes to governance / Susan M.C. Gibbons and Andrew Smart
Attitudes to particular laws and governing bodies / Susan M.C. Gibbons and Andrew Smart
Preferences for governance / Susan M.C. Gibbons and Andrew Smart
Enacting governance : the case of access / Catherine Heeney and Andrew Smart
Reflections on practice and governance / Jane Kaye
Ethics and the governance of biobanks / Catherine Heeney and Michael Parker.
Summary
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.--Back cover.
Bibliography, etc. Note
Includes bibliographical references and index.
Available Note
Also issued in print.
Location
www
Available in Other Form
Original
Linked Resources
Alternate Title
Bloomsbury Collections
Language
English
Reproduction
Electronic reproduction. London : Bloomsbury Publishing, 2014. Available via World Wide Web. Access limited by licensing agreement.
ISBN
9781472565846 online
9781841139050 paperback
9781847318848 electronic book
9781847318831 PDF
9781841139050 paperback
9781847318848 electronic book
9781847318831 PDF
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