Toward a model informed consent process for BRCA1 testing: A qualitative assessment of women's attitudes

Barbara A. Bernhardt, Gail Geller, Misha Strauss, Kathy J. Helzlsouer, Michael Stefanek, Patti M. Wilcox, Neil A. Holtzman

Research output: Contribution to journalArticle

38 Scopus citations

Abstract

As an initial part of a project to develop a model informed consent process for BRCA1 testing, we conducted a series of focus groups. At the groups, women initially expressed great interest in testing, but their interest diminished after learning more. If offered testing, women would most want to learn about test accuracy, practical details of testing, and management options if the result was positive. Perceived benefits of testing included gaining information leading to risk reduction, relief of uncertainty, more responsible parenting, and assisting in research. Perceived risks included the discomfort and cost of the testing process itself, and anxiety after a positive result. The risk of possible insurance discrimination was rarely mentioned spontaneously. Many women would want their providers to make recommendations, rather than be nondirective about testing. We observed that women vary greatly in their informational and counseling needs, and suggest that the informed consent process should be individualized, taking into account a woman's perception and her preferences for how testing decisions should be made.

Original languageEnglish (US)
Pages (from-to)207-222
Number of pages16
JournalJournal of Genetic Counseling
Volume6
Issue number2
DOIs
StatePublished - Jan 1 1997

Keywords

  • Breast cancer
  • Genetic testing
  • Informed consent
  • Patient decision-making

ASJC Scopus subject areas

  • Genetics(clinical)

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    Bernhardt, B. A., Geller, G., Strauss, M., Helzlsouer, K. J., Stefanek, M., Wilcox, P. M., & Holtzman, N. A. (1997). Toward a model informed consent process for BRCA1 testing: A qualitative assessment of women's attitudes. Journal of Genetic Counseling, 6(2), 207-222. https://doi.org/10.1023/A:1025668320403