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Disclosure of individual genetic data to research participants: the debate reconsidered

Bredenoord, A. L. and Kroes, H.Y. and Cuppen, E. and Parker, M. and Delden van, J.J.M. (2010) Disclosure of individual genetic data to research participants: the debate reconsidered. Trends in Genetics, 27, 41-7. ISSN 0168-9525.

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Official URL: http://dx.doi.org/10.1016/j.tig.2010.11.004

Abstract

Despite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more urgent. In this debate two positions can be broadly discerned: a restrictive disclosure policy ('no feedback except life-saving data') and an intermediate policy of qualified disclosure ('feedback if the results meet certain conditions'). We explain both positions and present the principal underlying arguments. We suggest that the debate should no longer address whether genetic research results should be returned, but instead how best to make an appropriate selection and how to strike a balance between the possible benefits of disclosure and the harms of unduly hindering biomedical research.

Item Type:Article
Institutes:Hubrecht Instituut
ID Code:9533
Deposited On:11 Feb 2011 01:00
Last Modified:07 Sep 2011 17:01

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