Open AccessReturning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations
Author(s) -
Wolf Susan M.,
Branum Rebecca,
Koenig Barbara A.,
Petersen Gloria M.,
Berry Susan A.,
Beskow Laura M.,
Daly Mary B.,
Fernandez Conrad V.,
Green Robert C.,
LeRoy Bonnie S.,
Lindor Noralane M.,
O'Rourke P. Pearl,
Breitkopf Carmen Radecki,
Rothstein Mark A.,
Van Ness Brian,
Wilfond Benjamin S.
Publication year - 2015
Publication title -
the journal of law, medicine & ethics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.515
H-Index - 57
eISSN - 1748-720X
pISSN - 1073-1105
DOI - 10.1111/jlme.12288
Subject(s) - participant observation , psychology , social psychology , sociology , social science
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.