Ethical Issues in Governing Biobanks: Global Perspectives

Alex Capron is co-editor of a new book, B. Elger, N. Biller-Andorno, A. Mauron & A. Capron, eds, Ethical Issues in Governing Biobanks: Global Perspectives, published in December 2008 by Ashgate. The book grew out of a project that originated while Professor Capron was the Director of Ethics, Trade, Human Rights and Health Law for the World Health Organization in Geneva (2002-06). Population genomics research drawing on genetic databases (sometimes called "biobanks") has expanded rapidly around the world in the past decade. Managing this information in an appropriate way presents highly complex ethical problems in the health policy arena. Capron and his colleagues from the universities of Geneva and Zurich 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 nearly 90 experts around the world concerning the most unresolved and controversial issues, built around their responses to four "scenarios" on practices concerning biobanks. The results of that study, combined with their normative analysis, leads to recommendations for a better international framework.

Book Cover

Table of Contents

  1. Introduction: biobanks, genomics, and research - a nightmare for public policy makers?, Alex Mauron

Part I Research Biobanks: Current Status and Debates

  1. Biobanks in the literature, Bartha Maria Knoppers and Ma'n H. Abdul-Rahman
  2. Guidelines on biobanks: emerging consensus and unresolved controversies, Effy Vayena, Agomoni Ganguli-Mitra and Nikola Biller-Andorno

Part II Consensus and Controversies Among International Experts Concerning Issues Raised by Genetic Databases

  1. 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
  2. Consent and use of samples, Bernice Elger
  3. Consent to research involving human biological samples obtained during medical care, Bernice Elger
  4. Collective consent, Agomoni Ganguli-Mitra
  5. Withdrawal of consent and destruction of samples, Bernice Elger
  6. Anonymization and coding, Bernice Elger
  7. Informing participants about research results, Andrea Boggio
  8. Ownership of samples and data and territorial restrictions concerning data and samples beyond national boundaries, Andrea Boggio
  9. Public domain sharing, patents, and fees resulting from research involving genetic databases, Andrea Boggio
  10. Benefit-sharing and remuneration, Agomoni Ganguli-Mitra
  11. 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

  1. 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
  2. Biobanks and genomic research: what shape the future?, Alex Capron