title: Public perspectives on informed consent for biobanking.
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 health. We assessed the public's attitudes toward the proposed biobank, including preferences for providing informed consent. Sixteen focus groups were conducted, and themes arising from the focus groups were tested in a large, representative survey (n=4659) of the general population. Our research demonstrates that when considering participating in a genomic biobank, individuals want ongoing choices and control over access to their samples and information.
authors.affiliation: Genetics and Public Policy Center, Johns Hopkins University, 1717 Massachusetts Ave, NW, Suite 530, 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; D001290:Attitude; D018070:Biological Specimen Banks / Q000941:ethics*; D005260:Female; D017144:Focus Groups; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D016015:Logistic Models; D008297:Male; D011639:Public Opinion; D014481:United States