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Toward a Model Informed Consent Process for BRCA1 Testing: A Qualitative Assessment of Women's Attitudes
Author(s) -
Bernhardt Barbara A.,
Geller Gail,
Strauss Misha,
Helzlsouer Kathy J.,
Stefanek Michael,
Wilcox Patti M.,
Holtzman Neil A.
Publication year - 1997
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1023/a:1025668320403
Subject(s) - informed consent , process (computing) , test (biology) , anxiety , focus group , genetic testing , perception , psychology , qualitative research , genetic counseling , risk assessment , medicine , social psychology , clinical psychology , applied psychology , medical education , alternative medicine , psychiatry , computer science , social science , genetics , pathology , paleontology , computer security , marketing , neuroscience , business , sociology , biology , operating system
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.