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Ethical Issues in Governing Biobanks: Global Perspectives, by Bernice Elger, Nikola Biller-Andorno, Alexandre Mauron and Alexander M. Capron

Population genomics research drawing on genetic databases has been expanding rapidly, with some of this information being combined into “biobanks,” which are collections of genetic information. Managing this information in an appropriate manner is a highly complex ethical undertaking in the health policy arena. This book, thus, combines theoretical and empirical research to examine 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), examined the conditions under which genetic databases should be established, stored, and used 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 problematic and controversial issues. The results of that study, combined with their normative analysis, leads to recommendations for a better international framework. The book will be a valuable resource for researchers and practitioners working in the development, maintenance and regulation of biobanks, and for ethicists and regulators developing guidance for ethical management of this important new scientific resource.