Knowledge, Attitudes, Willingness to Pay, and Patient Preferences About Genetic Testing and Subsequent Risk Management for Cancer Prevention

• Published in: Journal of cancer education Vol. 37; no. 2; pp. 362 - 369
• Main Authors: Guo, Fangjian, Hirth, Jacqueline M., Fuchs, Erika L., Cofie, Leslie E., Brown, Veronica, Kuo, Yong-Fang, Fernandez, Maria E., Berenson, Abbey B.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.04.2022; Springer Nature B.V
• Subjects: At Risk Persons; Biomedical and Life Sciences; Biomedicine; Breast cancer; Breast Neoplasms - diagnosis; Breast Neoplasms - genetics; Breast Neoplasms - prevention & control; Cancer; Cancer Research; Disease prevention; Female; Females; Genetic counseling; Genetic Testing; Genetics; Health Knowledge, Attitudes, Practice; Hispanic people; Humans; Mastectomy; Patient Preference; Pharmacology/Toxicology; Preferences; Risk Management; Willingness to pay; Breast cancer; Genetic testing; Risk management; Hispanic; Cancer risk
• ISSN: 0885-8195; 1543-0154; 1543-0154
• DOI: 10.1007/s13187-020-01823-0

Knowledge, attitudes, and patient preferences about genetic testing and subsequent risk management for cancer prevention among average risk populations are understudied, especially among Hispanics. This study was to assess these items by conducting an in-person survey in this understudied population. We conducted in-person surveys using a self-administered, structured questionnaire among young women in 2017. Survey questions were adapted from other validated surveys. This study had 677 participants in the final analyses. Data were collected in 2017 and analyzed in 2018 and 2019. Participants had little knowledge about genes or breast cancer risk, but most felt that genetic testing for cancer prevention is “a good idea” (87.0%), “a reassuring idea” (84.0%), and that “everyone should get the test” (87.7%). Most (64.0%) of these women would pay up to $25 for the test, 29.3% would pay $25–$500, and < 10% would pay more than $500 for the test. When asked about a hypothetical scenario of high breast cancer risk, 34.2% Hispanics and 24.5% non-Hispanics would choose chemoprevention. Women would be less likely to choose risk reduction procedures, such as mastectomy (19.6% among Hispanics and 15.1% among non-Hispanics) and salpingo-oophorectomy (11.8% among Hispanics and 10.7% among non-Hispanics). In this low-income, mostly Hispanic population, knowledge about genetic testing and cancer risk is poor, but most have positive opinions about genetic testing for cancer prevention. However, their strong preference for chemoprevention and lesser preference for prophylactic surgeries in a hypothetical scenario underscore the importance of genetic counseling and education.