Ethical Issues in Governing Biobanks : Global Perspectives.
Title:
Ethical Issues in Governing Biobanks : Global Perspectives.
Author:
Biller-Andorno, Nikola.
ISBN:
9780754689287
Personal Author:
Physical Description:
1 online resource (268 pages)
Contents:
Cover -- Contents -- Notes on the Contributors -- Acknowledgements -- 1 Introduction: Biobanks, Genomics, and Research-A Nightmare for Public Policy Makers? -- PART I: RESEARCH BIOBANKS: CURRENT STATUS AND DEBATES -- 2 Biobanks in the Literature -- 3 Guidelines on Biobanks: Emerging Consensus and Unresolved Controversies -- PART II: CONSENSUS AND CONTROVERSIES AMONG INTERNATIONAL EXPERTS CONCERNING ISSUES RAISED BY GENETIC DATABASES -- 4 Ethical Issues Regarding Research Biobanks: Aims, Methods, and Main Results of a Qualitative Study Among International and US Experts -- 5 Consent and Use of Samples -- 6 Consent to Research Involving Human Biological Samples Obtained During Medical Care -- 7 Collective Consent -- 8 Withdrawal of Consent and Destruction of Samples -- 9 Anonymization and Coding -- 10 Informing Participants about Research Results -- 11 Ownership of Samples and Data and Territorial Restrictions Concerning Data and Samples beyond National Boundaries -- 12 Public Domain Sharing, Patents, and Fees Resulting from Research Involving Genetic Databases -- 13 Benefit-sharing and Remuneration -- 14 Transfer of Samples and Sharing of Results: Requirements Imposed on Researchers -- PART III: SHAPING THE FUTURE LEGAL AND ETHICAL DEVELOPMENT OF GENETIC DATABASES -- 15 Towards an International Framework: Results of a Meeting of an International Group of Scholars and Scientists Involved in Legal and Practical Issues of Biobanks -- 16 Biobanks and Genomic Research: What Shape the Future? -- Index -- A -- B -- C -- D -- E -- F -- G -- H -- I -- J -- K -- L -- M -- N -- O -- P -- Q -- R -- S -- T -- U -- W.
Abstract:
Population genomics research drawing on genetic databases has expanded rapidly, with some of this information being combined in 'biobanks'. Managing this information in an appropriate way is a highly complex ethical issue in the health policy arena. This book combines theoretical and empirical research to analyze the areas of conflict and consensus in the regulatory and ethical frameworks that have been developed to govern biobanks. Ethicists from the Department of Ethics, Trade, Human Rights and Health Law (ETH) of the World Health Organization, the Institute of Biomedical Ethics of Geneva University and the Institute of Biomedical Ethics of the University of Zurich, with the support of the Geneva International Academic Network (GIAN), examine the conditions under which genetic databases can be established, kept, and made use of in an ethically acceptable way. In addition to a comprehensive review of the scientific literature and a comparative analysis of existing normative frameworks, they present the results of in-depth interviews with experts around the world concerning the most unresolved and controversial issues. The results of that study, combined with their normative analysis, leads to recommendations for a better international framework.
Local Note:
Electronic reproduction. Ann Arbor, Michigan : ProQuest Ebook Central, 2017. Available via World Wide Web. Access may be limited to ProQuest Ebook Central affiliated libraries.
Genre:
Electronic Access:
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