Publication: Ethical norms and the international governance of genetic databases and biobanks: findings from an international study
Ethical norms and the international governance of genetic databases and biobanks: findings from an international study
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Capron, A. M., Mauron, A., Elger, B. S., Boggio, A., Ganguli-Mitra, A., & Biller-Andorno, N. (2009). Ethical norms and the international governance of genetic databases and biobanks: findings from an international study. Kennedy Institute of Ethics Journal, 19(2), 101–124. https://doi.org/10.1353/ken.0.0278
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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 find
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Capron, A. M., Mauron, A., Elger, B. S., Boggio, A., Ganguli-Mitra, A., & Biller-Andorno, N. (2009). Ethical norms and the international governance of genetic databases and biobanks: findings from an international study. Kennedy Institute of Ethics Journal, 19(2), 101–124. https://doi.org/10.1353/ken.0.0278
