Public expectations for return of results from large-cohort genetic research

Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy, Kathy Hudson

Research output: Contribution to journalArticle

Abstract

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received.

Original languageEnglish (US)
Pages (from-to)36-43
Number of pages8
JournalAmerican Journal of Bioethics
Volume8
Issue number11
DOIs
StatePublished - Nov 1 2008

    Fingerprint

Keywords

  • Biobank
  • Cohort study
  • Engagement
  • Focus groups
  • Genetics
  • Public opinion
  • Results

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health Policy

Cite this