Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

Wolf SM1, Branum R2, Koenig BA3, Petersen GM4, Berry SA5, Beskow LM6, Daly MB7, Fernandez CV8, Green RC9, LeRoy BS10, Lindor NM11, O'Rourke PP12,Breitkopf CR13, Rothstein MA14, Van Ness B15, Wilfond BS16.

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Abstract

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.