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

TY - JOUR

T1 - Disclosure of individual genetic data to research participants: the debate reconsidered

AU - Bredenoord, A.L.

AU - Kroes, H.Y.

AU - Cuppen, E.

AU - Parker, M.

AU - van Delden, J.J.M.

N1 - Reporting year: 2010

PY - 2010

Y1 - 2010

N2 - 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.

AB - 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.

U2 - 10.1016/j.tig.2010.11.004

DO - 10.1016/j.tig.2010.11.004

M3 - Article

SN - 0168-9525

VL - 27

SP - 41

EP - 47

JO - Trends in Genetics

JF - Trends in Genetics

IS - 2

ER -