Governing biobanks : understanding the interplay between law and practice / by Jane Kaye ... [and others].

Format:

Book

Contributor:

Kaye, Jane, 1962- editor.

Language:

English

Subjects (All):

Biobanks--Law and legislation--Great Britain.

Biobanks.

Biobanks--Law and legislation.

Biobanks--Management.

Physical Description:

1 online resource (380 p.)

Edition:

1st ed.

Place of Publication:

Oxford [England] ; Portland, Oregon : Hart Publishing, 2012.

Language Note:

English

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."--Bloomsbury Publishing.

Contents:

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.

Notes:

Description based upon print version of record.

Includes bibliographical references and index.

ISBN:

9786613773982

9781472565846

1472565843

9781281063298

1281063290

9781847318831

1847318835

OCLC:

809768484