Principles and practice in biobank governance

Includes bibliographical references and index.

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 -- 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 -- Privacy interests in biobanking : a preliminary view on a European perspective -- David Townend ... [et al.] -- Feeding back significant findings to participants and relatives / Loane Skene -- Ensuring participant privacy in networked biobanks / Atieh Zarabzadeh ... [et al.] -- hSERN : a tool to help researchers with the legal requirements of cross-border exchange of biological material / Emmanuelle Rial-Sebbag ... [et al.] -- Biobanking networks : what are the governance challenges? / Jane Kaye -- Potential conflicts in governance mechanisms used in population biobanks / Karine Bédard ... [et al.] -- 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.