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Title

Ethical norms and the international governance of genetic databases and biobanks: findings from an international study

Authors
Capron, Alexander Morgan
Boggio, Andrea
Ganguli-Mitra, Agomoni
Biller-Andorno, Nikola
Published in Kennedy Institute of Ethics Journal. 2009, vol. 19, no. 2, p. 101-24
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.
Keywords Databases, Genetic/ethics/standards/trendsEthical AnalysisGenetic Privacy/ethics/standards/trendsGenetic Research/ethicsHumansInformed ConsentInternational CooperationOwnershipTissue Banks/ethics/standards/trends
Identifiers
PMID: 19623818
Full text
Structures
Research groups Enjeux bioéthiques de la recherche sur l'embryon et de la génétique humaine (133)
Le Secret médical (676)
Bioéthique générale (781)
Ethique biomédicale (783)
Citation
(ISO format)
CAPRON, Alexander Morgan et al. Ethical norms and the international governance of genetic databases and biobanks: findings from an international study. In: Kennedy Institute of Ethics Journal, 2009, vol. 19, n° 2, p. 101-24. https://archive-ouverte.unige.ch/unige:5458

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Deposited on : 2010-03-17

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