Rapid technological advances, the establishment of large-scale biobanks, and the exchange of data across international boundaries raise a variety of questions for regulators struggling with the problem of how to govern such stores of information and the processes connected with them. Engaging with the pressing issues of privacy, consent, access to data, and benefit sharing, Principles and Practice in Biobank Governance draws together the latest empirical research from the UK, Europe, America, Australia and Asia to focus on these challenges. Current models of governance are critiqued, principles and policies are debated, and new models and theoretical frameworks are presented through this intellectually stimulating, informative volume. This truly international volume offers new insights from a range of disciplinary perspectives and will be essential reading for policy makers and scholars across a range of social sciences, including sociology, bioethics, law and social policy.
|Publisher:||Taylor & Francis|
|Product dimensions:||6.00(w) x 9.30(h) x 1.10(d)|
Table of Contents
Contents: Governing biobanks: an introduction, Mark Stranger and Jane Kaye; Part 1 Benefit Sharing: What benefit sharing arrangements do people want from biobanks? A survey of public opinion in Australia, Dianne Nicol and Christine Critchley; Reconsidering altruism, introducing reciprocity and empowerment in the governance of biobanks, Nadja Kanellopoulou; From benefit sharing to power sharing: partnership governance in population genomics research, David E. Winickoff. Part 2 Consent: Co-determination of donors in biobanks, Lukas Gundermann and Ulrich Stockter; Developing an appropriate consent model for biobanks: in defence of 'broad' consent, Margaret Otlowski; Consent by research ethics committees: the new law on biomedical research in Spain, Antonio Casado da Rocha and Ismael Etxeberria Agiriano; Addressing the ethical objections to pediatric biobanks, Kristien Hens and Kris Dierickx; Deciding whether to participate in a biobank: the concerns of healthy volunteers, R. Jean Cadigan and Arlene M. Davis. Part 3 Privacy and Access: Privacy interests in biobanking: a preliminary view on a European perspective, David Townend, Mark J. Taylor, Jessica Wright and Dita Wickins-Drazilova; Feeding back significant findings to participants and relatives, Loane Skene; Ensuring participant privacy in networked biobanks, Atieh Zarabzadeh, R. William G. Watson, Geoff Bradley and Jane Grimson; hSERN: a tool to help researchers with the legal requirements of cross-border exchange of biological material, Emmanuelle Rial-Sebbag, Aurélie Mahalatchimy, Dennis Chartier and Anne Cambon-Thomsen; Biobanking networkswhat are the governance challenges?, Jane Kaye. Part 4 Governing Bodies: Potential conflicts in governance mechanisms used in population biobanks, Karine Bédard, Susan Wallace, Stephanie Lazor and Bartha Maria Knoppers; UK Biobank Ethics and Governance Council: an exercise in added value, Martin Richards, Adrienne Hunt and Graeme Laurie; The end of individual control over health information: promoting fair information practices and the governance of biobank research, Trudo Lemmens and Lisa Austin; From public inquiry to policy: biobanks, population genetics and the public interest, David Weisbrot; Index.