title: Genetic information: Special or not? Responses from focus groups with members of a health maintenance organization.
abstract: Genetic information is used increasingly in health care. Some experts have argued that genetic information is qualitatively different from other medical information and, therefore, raises unique social issues. This view, called "genetic exceptionalism," has importantly influenced recent policy efforts. Others have argued that genetic information is like other medical information and that treating it differently may actually result in unintended disparities. Little is known about how the general public views genetic information. To identify opinions about implications of genetic and other medical information among the general population, we conducted a series of focus groups in Seattle, WA. Participants were women and men between ages 18 and 74, living within 30 miles of Seattle and members of the Group Health Cooperative. A structured discussion guide was used to ensure coverage of all predetermined topics. Sessions lasted approximately 2 hr; were audio taped and transcribed. The transcripts formed the basis of the current analysis. Key findings included the theme that genetic information was much like other medical information and that all sensitive medical information should be well protected. Personal choice (i.e., the right to choose whether to know health risk information and to control who else knows) was reported to be of crucial importance. Participants had an understanding of the tensions involved in protecting privacy versus sharing medical information to help another person. These data may guide future research and policy concerning the use and protection of medical information, including genetic information.
authors.affiliation: Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, Washington, USA. bdiergaa@fhcrc.org
authors.forename: Brenda
authors.initials: B
authors.lastname: Diergaarde
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: Bowen
authors.forename: Evette J
authors.initials: EJ
authors.lastname: Ludman
authors.forename: Julie O
authors.initials: JO
authors.lastname: Culver
authors.forename: Nancy
authors.initials: N
authors.lastname: Press
authors.forename: Wylie
authors.initials: W
authors.lastname: Burke
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003219:Confidentiality / Q000941:ethics*; D005260:Female; D017144:Focus Groups; D030661:Genetic Privacy / Q000941:ethics*; D006279:Health Maintenance Organizations / Q000592:standards*; D006801:Humans; D008297:Male; D008490:Medical Informatics / Q000941:ethics / Q000639:trends; D008875:Middle Aged