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

J Law Med Ethics. Fall 2015;43(3):464-75. doi: 10.1111/jlme.12289.

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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude
  • Biological Specimen Banks*
  • Confidentiality / ethics
  • Confidentiality / legislation & jurisprudence
  • Disclosure* / ethics
  • Disclosure* / legislation & jurisprudence
  • Family*
  • Female
  • Genetic Research* / ethics
  • Genetic Research* / legislation & jurisprudence
  • Genomics* / ethics
  • Genomics* / legislation & jurisprudence
  • Humans
  • Male
  • Middle Aged
  • Pancreatic Neoplasms / genetics*
  • Patient Preference* / legislation & jurisprudence
  • Patient Preference* / psychology
  • Surveys and Questionnaires
  • Young Adult