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

J Law Med Ethics. Fall 2015;43(3):440-63. doi: 10.1111/jlme.12288.

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Child
  • Disclosure / ethics*
  • Disclosure / legislation & jurisprudence*
  • Family*
  • Genomics / ethics*
  • Genomics / legislation & jurisprudence*
  • Humans
  • Informed Consent
  • Research Subjects / legislation & jurisprudence*