Population genomics research drawing on genetic databases has expanded rapidly in recent years. In some cases, this information has been combined with details on individuals' health, lifestyle or genealogy. Protecting the data available from such databases has consequently emerged as a highly complex ethical issue in the health policy arena. This book combines theoretical and empirical research to discuss the development of an international regulatory framework to provide practical guidance.In this volume, the Geneva International Academic Network (GIAN), the Department of Ethics, Trade, Human Rights and Health Law (ETH) of the World Health Organization, and the Institute of Biomedical Ethics of Geneva University have joined together to study the conditions under which genetic databses can be established, kept, and made use of in an ethically acceptable way. The work includes a comprehensive review of the scientific literature along with a comparative analysis of existing normative frameworks. Unresovled and controversial issues are taken up in empirical studies and the results combined with analysis to produce draft recommendations towards an international framework.The book will be a valuable resource for researchers and practitioners working in the development, maintenance and regulation of biobanks.
Introduction: biobanks, genomics, and research - a nightmare for public policy makers?, Alex Mauron; Biobanks in the literature, Bartha Maria Knoppers and Ma'n H. Abdul-Rahman; Guidelines on biobanks: emerging consensus and unresolved controversies, Effy Vayena, Agomoni Ganguli-Mitra and Nikola Biller-Andorno; 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 and Alex Mauron; The results of the interviews: consensus and unresolved controversies among international and US experts concerning research involving genetic databases, Bernice Elger, Agomoni Ganguli-Mitra and Andrea Boggio; 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; Biobanks and genomic research - what shape the future?, Alex Capron; Index.