Genetic information: Special or not? Responses from focus groups with members of a health maintenance organization

Brenda Diergaarde, Deborah J. Bowen, Evette J. Ludman, Julie O. Culver, Nancy Press, Wylie Burke

    Research output: Contribution to journalArticle

    14 Citations (Scopus)

    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.

    Original languageEnglish (US)
    Pages (from-to)564-569
    Number of pages6
    JournalAmerican Journal of Medical Genetics, Part A
    Volume143
    Issue number6
    DOIs
    StatePublished - Mar 15 2007

    Fingerprint

    Health Maintenance Organizations
    Focus Groups
    Computer Security
    Information Dissemination
    Privacy
    Health
    Medical Genetics
    Delivery of Health Care
    Population

    Keywords

    • Genetic information
    • Policy
    • Privacy
    • Qualitative research

    ASJC Scopus subject areas

    • Genetics(clinical)

    Cite this

    Genetic information : Special or not? Responses from focus groups with members of a health maintenance organization. / Diergaarde, Brenda; Bowen, Deborah J.; Ludman, Evette J.; Culver, Julie O.; Press, Nancy; Burke, Wylie.

    In: American Journal of Medical Genetics, Part A, Vol. 143, No. 6, 15.03.2007, p. 564-569.

    Research output: Contribution to journalArticle

    Diergaarde, Brenda ; Bowen, Deborah J. ; Ludman, Evette J. ; Culver, Julie O. ; Press, Nancy ; Burke, Wylie. / Genetic information : Special or not? Responses from focus groups with members of a health maintenance organization. In: American Journal of Medical Genetics, Part A. 2007 ; Vol. 143, No. 6. pp. 564-569.
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