PURPOSE To understand genetic testing use and decision making among patients with high genetic risk. MATERIALS AND METHODS A survey of breast cancer survivors was administered online by a hereditary cancer nonprofit organization, Facing Our Risk of Cancer Empowered, from October 2017 to March 2018. RESULTS Of 1,322 respondents, 46% had breast cancer at age < 45 years, 61% had a first-degree relative with cancer, and 84% underwent genetic testing, of whom 56% had a risk-associated pathogenic variant. Most (86%; 95% Cl, 84% to 88%) tested respondents were very satisfied with their testing decision, versus 34% (95% Cl, 27% to 41%) of untested respondents. Factors that encouraged testing included relatives' cancer risk (75%; 95% Cl, 73% to 78%), clinicians' recommendations (68%; 95% Cl, 66% to 71%), and potential treatment implications (67%; 95% Cl, 64% to 69%). Factors that discouraged testing included insurance concerns (14%; 95% Cl, 12% to 16%), cost (14%; 95% Cl, 12% to 16%), and discrimination (9%; 95% Cl, 7% to 11%). Thirty-nine percent (95% Cl, 36% to 41%) recalled hearing from a clinician that genetic discrimination is illegal. Respondents often recalled clinicians informing them about inheritance patterns (65%; 95% Cl, 62% to 67%), surgical implications (65%; 95% Cl, 63% to 68%), and other cancer risks (66%; 95% Cl, 63% to 68%) but less often that results could have potential implications for clinical trial eligibility (38%; 95% Cl, 36% to 42%) or targeted therapies (14%; 95% Cl, 12% to 16%). Patients who had genetic counseling were twice as likely to recall clinicians informing them about all queried topics. Results did not vary by diagnosis year.
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