Principles and Practice in Biobank Governance Book

Governing biobanks : an introduction Mark Stranger Stranger, Mark Jane Kaye Kaye, Jane 1

1 What benefit sharing arrangements do people want from biobanks? : a survey of public opinion in Australia Dianne Nicol Nicol, Dianne Christine Critchley Critchley, Christine 17

2 Reconsidering altruism, introducing reciprocity and empowerment in the governance of biobanks Nadja Kanellopoulou Kanellopoulou, Nadja 33

3 From benefit sharing to power sharing : partnership governance in population genomics research David E. Winickoff Winickoff, David E. 53

4 Co-determination of donors in biobanks Lukas Gundermann Gundermann, Lukas Ulrich Stockter Stockter, Ulrich 69

5 Developing an appropriate consent model for biobanks : in defence of 'broad' consent Margaret Otlowski Otlowski, Margaret 79

6 Consent by research ethics committees : the new law on biomedical research in Spain Antonio Casado da Rocha Rocha, Antonio Casado da Ismael Etxeberria Agiriano Agiriano, Ismael Etxeberria 93

7 Addressing the ethical objections to pediatric biobanks Kristien Hens Hens, Kristien Kris Dierickx Dierickx, Kris 105

8 Deciding whether to participate in a biobank : the concerns of healthy volunteers R. Jean Cadigan Cadigan, R. Jean Arlene M. Davis Davis, Arlene M. 117

9 Privacy interests in biobanking : a preliminary view on a European perspective David Townend Townend, David Mark J. Taylor Taylor, Mark J. Jessica Wright Wright, Jessica Dita Wickins-Drazilova Wickins-Drazilova, Dita 137

10 Feeding back significant findings to participants and relatives Loane Skene Skene, Loane 161

11 Ensuring participant privacy in networked biobanks Atieh Zarabzadeh Zarabzadeh, AtiehR. William G. Watson Watson, R. William G. Geoff Bradley Bradley, Geoff Jane Grimson Grimson, Jane 177

12 hSERN : a tool to help researchers with the legal requirements of cross-border exchange of biological material Emmanuelle Rial-Sebbag Rial-Sebbag, Emmanuelle Aurelie Mahalatchimy Mahalatchimy, Aurelie Dennis Chartier Chartier, Dennis Anne Cambon-Thomsen Cambon-Thomsen, Anne 191

13 Biobanking networks - what are the governance challenges? Jane Kaye Kaye, Jane 201

14 Potential conflicts in governance mechanisms used in population biobanks Karine Bedard Bedard, Karine Susan Wallace Wallace, Susan Stephanie Lazor Lazor, Stephanie Bartha Maria Knoppers Knoppers, Bartha Maria 217

15 UK biobank ethics and governance council : an exercise in added value Martin Richards Richards, Martin Adrienne Hunt Hunt, Adrienne Graeme Laurie Laurie, Graeme 229

16 The end of individual control over health information : promoting fair information practices and the governance of biobank research Trudo Lemmens Lemmens, Trudo Lisa Austin Austin, Lisa 243

17 From public inquiry to policy : biobanks, population genetics and the public interest David Weisbrot Weisbrot, David 267

Index 287