Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2

The perceived benefits and risks of genetic testing may vary between groups of individuals with different cultural, demographic, and family history fe atures. This multicentre study examined the factors that influenced the dec ision to undergo genetic testing for BRCA1 and BRCA2 in Canadian Jewish wom en with breast cancer. A self-administered questionnaire was developed and distributed to 134 individuals enrolled in a research-based testing program for Ashkenazi women. The questionnaire assessed demographic, social, and f amily history parameters, and the influence of medical, family, social, psy chological, and cultural/ religious factors on decision making about geneti c testing. Seventy-six percent of women completed the questionnaire. Forty- one percent of study participants had no family history of breast or ovaria n cancer. The most important factors influencing the decision to undergo te sting were a desire to contribute to research, potential benefit to other f amily members, curiosity, and the potential for relief if not found to be a carrier (endorsed by 87, 78, 70, and 60% of participants, respectively). T he main perceived risks of undergoing genetic testing related to insurance discrimination, confidentiality, accuracy and interpretability of results, potential impact on marriage prospects for family members, and focus on the Jewish community (endorsed by 28, 24, 30, 17, and 14% of participants, res pectively). This study provides novel information on the motivating factors for BRCA1 and BRCA2 mutation testing in Canadian women of Ashkenazi Jewish descent. The focus on altruistic factors and those related to perceived ps ychological benefits of testing is notable.