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

• Published in: Kennedy Institute of Ethics journal Vol. 19; no. 2; pp. 101 - 124
• Main Authors: Capron, Alexander Morgan, Mauron, Alexandre, Elger, Bernice Simone, Boggio, Andrea, Ganguli-Mitra, Agomoni, Biller-Andorno, Nikola
• Format: Journal Article
• Language: English
• Published: United States Johns Hopkins University Press 01.06.2009
• Subjects: Agreements; Biobanks; Bioethics; Comparative analysis; Consent; Cultural organizations; Databases, Genetic - ethics; Databases, Genetic - standards; Databases, Genetic - trends; Ethical Analysis; Ethics; Genetic Privacy - ethics; Genetic Privacy - standards; Genetic Privacy - trends; Genetic research; Genetic Research - ethics; Genetics; Human rights; Human subjects; Humans; Informed Consent; International Cooperation; International law; International organizations; Interviews; Minority & ethnic groups; NGOs; Nongovernmental organizations; Ownership; Regulation; Research methodology; Studies; Tissue Banks - ethics; Tissue Banks - standards; Tissue Banks - trends
• ISSN: 1054-6863; 1086-3249; 1086-3249
• DOI: 10.1353/ken.0.0278

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.