Principles and practice in biobank governance / edited by Jane Kaye, Mark Stranger.

Farnham, Surrey : Ashgate Publishing Ltd., c2009.

72344

Bioethics.

Biobanks -- Management.

Tissue banks -- Management.

Tissues -- Collection and preservation -- Government policy -- Collection and preservation -- Government policy.

Biological specimens -- Collection and preservation -- Government policy -- Collection and preservation -- Government policy.

Procurement of organs, tissues, etc. -- International cooperation.

PART 1 BENEFIT SHARING

1 What benefit sharing arrangements do people want from biobanks? A survey of public opinion in Australia

2 Reconsidering Altruism, Introducing reciprocity and empowerment in the governance of biobanks

3 From benefit sharing to power sharing: Partnership governance in population genomics research

PART 2 CONSENT

4 Co-determination of donors in biobanks

5 Developing an appropriate consent model for biobanks: In defence of "broad' consent

6 Consent by research ethics committee: The new law on biomedical research in Spain

7 Addressing the ethical objections to pediatric biobanks

8 Deciding whether to participate in a biobank: The concerns of healthy volunteers

PART 3 PRIVACY AND ACCESS

9 Privacy interests in biobanking: A preliminary view on a European perspective

10 Feeding back significant findings to participants and relatives

11 Ensuring participant privacy in networked biobanks

12 hSERN: A tool to help researchers with the legal requirements of cross-border exchange of biological material

13 Biobanking networks - what are the governance challenges?

PART 4 GOVERNING BODIES

14 Potential conflicts in governance mechanisms used in population biobanks

15 UK biobank ethics and governance council: an exercise in added value

16 The end of individual control over health information: promoting fair information practices and the governance of biobank research.

Includes bibliographical references and index.

9780754678250

xxii, 292 p. : ill. ; 24 cm