Opis: Principles and Practice in Biobank Governance

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. 'From empirical data to conceptual analysis, and from assessment of public opinion to recommendations for policy, Kaye and Stranger have managed to pack a lot into this edited volume that will please researchers, policy makers and lay readers alike. It is a much needed collection that lives up to its offer to provide principles and practice for biobank governance.' Eric M. Meslin, Indiana University Center for Bioethics, USA 'The governance of biobanks is a major ethical issue of our time. This volume combines the latest empirical findings with an international blend of scientific, ethical, legal and sociological expertise, resulting in a comprehensive critique of current practice and focused suggestions for future development. Helpfully jargon-free, it should be a major resource for biobank planners, funders, administrators, users - and participants.' Alastair Campbell, National University of Singapore, SingaporeContents: 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, Aurelie Mahalatchimy, Dennis Chartier and Anne Cambon-Thomsen; Biobanking networks - what are the governance challenges?, Jane Kaye. Part 4 Governing Bodies: Potential conflicts in governance mechanisms used in population biobanks, Karine Bedard, 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.

Szczegóły: Principles and Practice in Biobank Governance

Tytuł: Principles and Practice in Biobank Governance
Producent: Ashgate Publishing Company
ISBN: 9780754678250
Rok produkcji: 2009
Ilość stron: 192
Oprawa: Twarda

Recenzje: Principles and Practice in Biobank Governance