Principles and Practice in Biobank Governance
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Principles and Practice in Biobank Governance
Stranger, Mark; Kaye, Jane
Taylor & Francis Ltd
11/2009
316
Dura
Inglês
9780754678250
15 a 20 dias
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. This title focuses on these challenges.
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, AurA(c)lie Mahalatchimy, Dennis Chartier and Anne Cambon-Thomsen; Biobanking networks a " what are the governance challenges?, Jane Kaye. Part 4 Governing Bodies: Potential conflicts in governance mechanisms used in population biobanks, Karine BA(c)dard, 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.
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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. This title focuses on these challenges.
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, AurA(c)lie Mahalatchimy, Dennis Chartier and Anne Cambon-Thomsen; Biobanking networks a " what are the governance challenges?, Jane Kaye. Part 4 Governing Bodies: Potential conflicts in governance mechanisms used in population biobanks, Karine BA(c)dard, 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.
Este título pertence ao(s) assunto(s) indicados(s). Para ver outros títulos clique no assunto desejado.
