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

A.L. Bredenoord; H.Y. Kroes; E. Cuppen; M. Parker; J.J.M. van Delden

doi:10.1016/j.tig.2010.11.004

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

A.L. Bredenoord, H.Y. Kroes, E. Cuppen, M. Parker, J.J.M. van Delden

Hubrecht Institute

Research output: Contribution to journal/periodical › Article › Scientific › peer-review

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.

Original language	English
Pages (from-to)	41-47
Journal	Trends in Genetics
Volume	27
Issue number	2
DOIs	https://doi.org/10.1016/j.tig.2010.11.004
Publication status	Published - 2010

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title = "Disclosure of individual genetic data to research participants: the debate reconsidered",

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.",

author = "A.L. Bredenoord and H.Y. Kroes and E. Cuppen and M. Parker and {van Delden}, J.J.M.",

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AU - Cuppen, E.

AU - Parker, M.

AU - van Delden, J.J.M.

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

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