title: Public expectations for return of results from large-cohort genetic research.
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.
authors.affiliation: Genetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC 20036, USA. jmurph46@jhu.edu
authors.forename: Juli
authors.initials: J
authors.lastname: Murphy
authors.forename: Joan
authors.initials: J
authors.lastname: Scott
authors.forename: David
authors.initials: D
authors.lastname: Kaufman
authors.forename: Gail
authors.initials: G
authors.lastname: Geller
authors.forename: Lisa
authors.initials: L
authors.lastname: LeRoy
authors.forename: Kathy
authors.initials: K
authors.lastname: Hudson
mesh_terms: D000328:Adult; D000544:Alzheimer Disease / Q000208:ethnology / Q000209:etiology* / Q000235:genetics; D001249:Asthma / Q000209:etiology* / Q000235:genetics; D002755:Choice Behavior; D015331:Cohort Studies; D030541:Databases, Genetic; D004781:Environmental Exposure / Q000009:adverse effects; D017144:Focus Groups; D036281:Genetic Research / Q000941:ethics; D014644:Genetic Variation; D006077:Government Agencies; D006801:Humans; D009316:National Institutes of Health (U.S.); D010358:Patient Participation; D011639:Public Opinion; D036301:Qualitative Research; D035842:Research Subjects; D014342:Truth Disclosure / Q000941:ethics; D014481:United States