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 publication

DOI

10.1016/j.tig.2010.11.004

Type

Journal article

Journal

Trends Genet

Publication Date

02/2011

Volume

27

Pages

41 - 47

Keywords

Biomedical Research, Databases, Genetic, Disclosure, Genetic Research, Humans