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

Susan M Wolf, Rebecca Branum, Barbara A Koenig, Gloria M Petersen, Susan A Berry, Laura M Beskow, Mary B Daly, Conrad V Fernandez, Robert C Green, Bonnie S LeRoy, Noralane M Lindor, P Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A Rothstein, Brian Van Ness, Benjamin S Wilfond, Susan M Wolf, Rebecca Branum, Barbara A Koenig, Gloria M Petersen, Susan A Berry, Laura M Beskow, Mary B Daly, Conrad V Fernandez, Robert C Green, Bonnie S LeRoy, Noralane M Lindor, P Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A Rothstein, Brian Van Ness, Benjamin S Wilfond

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.

© 2015 American Society of Law, Medicine & Ethics, Inc.

Figures

Figure 1
Figure 1
Recommended pathway for considering the sharing of a living adult participant's results with relatives.
Figure 2
Figure 2
Recommended pathway for considering the sharing of a deceased adult participant's results with relatives.
Figure 3
Figure 3
Recommended pathway for considering the sharing of a living child participant's results with relatives.
Figure 4
Figure 4
Recommended pathway for considering the sharing of a deceased child participant's results with relatives.

Source: PubMed

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