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

Am J Bioeth. 2008 Nov;8(11):36-43. doi: 10.1080/15265160802513093.


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.

Publication types

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

MeSH terms

  • Adult
  • Alzheimer Disease / ethnology
  • Alzheimer Disease / etiology*
  • Alzheimer Disease / genetics
  • Asthma / etiology*
  • Asthma / genetics
  • Choice Behavior*
  • Cohort Studies*
  • Databases, Genetic
  • Environmental Exposure / adverse effects
  • Focus Groups
  • Genetic Research* / ethics
  • Genetic Variation
  • Government Agencies
  • Humans
  • National Institutes of Health (U.S.)
  • Patient Participation
  • Public Opinion*
  • Qualitative Research
  • Research Subjects*
  • Truth Disclosure* / ethics
  • United States