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.
authors.affiliation: University Medical Center Utrecht, Julius Center for Health Sciences and Primary Care, Department of Medical Ethics, Stratenum 6.131, PO Box 85500, 3508 GA Utrecht, The Netherlands. A.L.Bredenoord@umcutrecht.nl
authors.forename: Annelien L
authors.initials: AL
authors.lastname: Bredenoord
authors.forename: Hester Y
authors.initials: HY
authors.lastname: Kroes
authors.forename: Edwin
authors.initials: E
authors.lastname: Cuppen
authors.forename: Michael
authors.initials: M
authors.lastname: Parker
authors.forename: Johannes J M
authors.initials: JJ
authors.lastname: van Delden
mesh_terms: D035843:Biomedical Research; D030541:Databases, Genetic; D030881:Disclosure; D036281:Genetic Research; D006801:Humans