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

Research output: Contribution to journalArticlepeer-review

62 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)440-463
Number of pages24
JournalJournal of Law, Medicine and Ethics
Volume43
Issue number3
DOIs
StatePublished - Sep 1 2015

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

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