Full Description
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.
Contents
Chapter 1 Introduction: Biobanks, Genomics, and Research—A Nightmare for Public Policy Makers?, Alex Mauron; Part I Research Biobanks: Current Status and Debates; Chapter 2 Biobanks in the Literature, Bartha Maria Knoppers, Ma'n H. Abdul-Rahman; Chapter 3 Guidelines on Biobanks: Emerging Consensus and Unresolved Controversies, Effy Vayena, Agomoni Ganguli-Mitra, Nikola Biller-Andorno; Part II Consensus and Controversies among International Experts Concerning Issues Raised by Genetic Databases; Chapter 4 Ethical Issues Regarding Research Biobanks: Aims, Methods, and Main Results of a Qualitative Study Among International and US Experts, Nikola Biller-Andorno, Andrea Boggio, Bernice Elger, Agomoni Ganguli-Mitra, Alex Capron, Alex Mauron; Chapter 5 Consent and Use of Samples, Bernice Elger; Chapter 6 Consent to Research Involving Human Biological Samples Obtained During Medical Care, Bernice Elger; Chapter 7 Collective Consent, Agomoni Ganguli-Mitra; Chapter 8 Withdrawal of Consent and Destruction of Samples, Bernice Elger; Chapter 9 Anonymization and Coding, Bernice Elger; Chapter 10 Informing Participants about Research Results, Andrea Boggio; Chapter 11 Ownership of Samples and Data and Territorial Restrictions Concerning Data and Samples beyond National Boundaries, Andrea Boggio; Chapter 12 Public Domain Sharing, Patents, and Fees Resulting from Research Involving Genetic Databases, Andrea Boggio; Chapter 13 Benefit-sharing and Remuneration, Agomoni Ganguli-Mitra; Chapter 14 Transfer of Samples and Sharing of Results: Requirements Imposed on Researchers, Andrea Boggio; Part III Shaping the Future Legal and Ethical Development of Genetic Databases; Chapter 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, Alex Mauron; Chapter 16 Biobanks and Genomic Research: What Shape the Future?, Alex Capron;
