Monday, October 10, 2011

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

In this article from Trends in Genetics, authors address the ongoing debate of whether or not researchers are morally and ethically bound to release data to participants of genetic studies. The question of disclosure becomes more difficult in genetic studies because the participants are not entering the study with the expectation that they will hear results, which differs from a personally-requested whole-genome sequence or specific gene sequencing from 23andme, for example. Debate currently stands in two fields, restrictive disclosure policy ('no, unless') and qualitative disclosure policy ('yes, if'). Key among this debate is the argument of beneficence, which says that researchers are morally obligated to reveal genetic results to participants if the results will prove valuable to the patient, i.e. life-saving. Authors note that it is interesting how the two extremes of "no disclosure whatsoever" and "full disclosure" are not included in this debate.

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