Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank

Carmen Radecki Breitkopf, Gloria M Petersen, Susan M. Wolf, Kari G. Chaffee, Marguerite E. Robinson, Deborah R. Gordon, Noralane Morey Lindor, Barbara A. Koenig

Research output: Contribution to journalArticle

15 Citations (Scopus)

Abstract

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

Original languageEnglish (US)
Pages (from-to)464-475
Number of pages12
JournalJournal of Law, Medicine and Ethics
Volume43
Issue number3
DOIs
StatePublished - Sep 1 2015

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Genetic Research
Pancreatic Neoplasms
Research
Registries
Neoplasms
Surveys and Questionnaires

ASJC Scopus subject areas

  • Health Policy
  • Issues, ethics and legal aspects

Cite this

Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death : Empirical Results from a Cancer Biobank. / Radecki Breitkopf, Carmen; Petersen, Gloria M; Wolf, Susan M.; Chaffee, Kari G.; Robinson, Marguerite E.; Gordon, Deborah R.; Lindor, Noralane Morey; Koenig, Barbara A.

In: Journal of Law, Medicine and Ethics, Vol. 43, No. 3, 01.09.2015, p. 464-475.

Research output: Contribution to journalArticle

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