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Ethical Norms and the International Governance of Genetic Databases and Biobanks: Findings from an International Study

Alexander M. Capron, USC Law School
Alexandre Mauron, Inst. for Biomedical Studies, Univ. of Geneva
Bernice S. Elger, Center for Legal Medicine, Univ. of Geneva
Andrea Boggio, Bryant University
Agomoni Ganguli-Mitra, Inst. for Biomedical Ethics, Univ. of Zurich
Nikola Biller-Andorno, Inst. for Biomedical Ethics, Univ. of Zurich

Article comments

This paper is forthcoming in 19 Kennedy Institute of Ethics Journal 101 (June 2009).

The full text of this version of the article is not currently available online.

Abstract

This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers’ use of samples obtained from biobanks; (3) what constitutes “collective consent” to genetic research, and when it is needed; and (4) benefit sharing and remuneration of research participants. The paper then summarizes key lessons to be drawn from the findings and concludes by reflecting on the importance of such empirical research to inform future governance norms and practices.

Subject Area

Health Law and Policy, International Law

Recommended Citation

Alexander M. Capron, Alexandre Mauron, Bernice S. Elger, Andrea Boggio, Agomoni Ganguli-Mitra, and Nikola Biller-Andorno, "Ethical Norms and the International Governance of Genetic Databases and Biobanks: Findings from an International Study" (June 2009). University of Southern California. University of Southern California Legal Studies Working Paper Series. Working Paper 46.
http://law.bepress.com/usclwps/lss/art46

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