Ethical norms and the international governance of genetic databases and biobanks: findings from an international study.
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.
Capron
Alexander Morgan
AM
Pacific Center for Health Policy and Ethics, University of Southern California, Los Angeles, CA, USA.
Mauron
Alexandre
A
Elger
Bernice Simone
BS
Boggio
Andrea
A
Ganguli-Mitra
Agomoni
A
Biller-Andorno
Nikola
N
D030541:Databases, Genetic / Q000941:ethics* / Q000592:standards / Q000639:trends; D026689:Ethical Analysis; D030661:Genetic Privacy / Q000941:ethics* / Q000592:standards / Q000639:trends; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D007258:Informed Consent; D007391:International Cooperation; D010067:Ownership; D014015:Tissue Banks / Q000941:ethics* / Q000592:standards / Q000639:trends