TY - JOUR
T1 - Toward a model informed consent process for BRCA1 testing
T2 - A qualitative assessment of women's attitudes
AU - Bernhardt, Barbara A.
AU - Geller, Gail
AU - Strauss, Misha
AU - Helzlsouer, Kathy J.
AU - Stefanek, Michael
AU - Wilcox, Patti M.
AU - Holtzman, Neil A.
N1 - Funding Information:
We are indebted to all the women who participated in these focus groups and helped us understand their decision-making process regarding breast cancer susceptibility testing. We are also grateful to Sharon Ennis and Ellen Tambor for assistance in organizing the focus groups. This work was supported by grant R01 HG00026 from the National Center for Human Genome Research and R01 NR04062-01 from the National Institute for Nursing Research, NIH.
PY - 1997
Y1 - 1997
N2 - 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.
AB - 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.
KW - Breast cancer
KW - Genetic testing
KW - Informed consent
KW - Patient decision-making
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U2 - 10.1023/A:1025668320403
DO - 10.1023/A:1025668320403
M3 - Article
C2 - 11656642
AN - SCOPUS:0031151757
SN - 1059-7700
VL - 6
SP - 207
EP - 222
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
IS - 2
ER -