BACKGROUND: The prevalence of BRCA1/2 mutations among Ashkenazi Jews is 1 in 40. Compared to family history-based BRCA testing, population-based testing has been shown to detect more mutation carriers in this population. Orthodox Jews (OJ) are the largest and fastest-growing Jewish population in NY and represent a spectrum of observance including Modern Orthodox, Yeshivish, and Chassidic. This understudied population has unique social, cultural, and religious factors that may influence BRCA genetic testing. We examined factors influencing BRCA genetic testing decision-making and uptake among OJ women.
METHODS: Using a mixed-methods approach, we conducted a cross-sectional online survey and 4 focus groups among OJ women in 5 communities in the NY/NJ area. The online survey included items on demographics, breast cancer risk factors, and validated measures of genetic testing intention/knowledge, breast cancer worry/risk perception, stigma, and religious/cultural factors affecting medical decision-making. Descriptive statistics and bivariate and multivariable logistic regression models were conducted. We conducted 4 focus groups with purposive sampling of women who responded to the survey. The qualitative analysis of the semi-structured focus group discussions further explored factors affecting BRCA genetic testing uptake.
RESULTS: Among 321 evaluable survey participants, median age was 47 years (range, 25-82); 55.8% were Modern Orthodox, 30.5% Yeshivish, and 2.8% Chassidic; 84% were married; 6.2% and 0.6% had a history of breast and ovarian cancer, respectively. Although 57.6% had a masters or doctoral degree, only 37.7% had adequate genetic testing knowledge. Nearly 20% of the surveyed women had undergone BRCA genetic testing. After adjusting for known confounders, women who met family history criteria for BRCA genetic testing were nearly 10 times more likely to undergo genetic testing. Modern Orthodox compared to non-Modern Orthodox women and married compared to unmarried women were more likely to undergo genetic testing (odds ratio [OR]=2.31, 95% confidence interval [CI]=1.03-5.17; OR=3.49, 95% CI=1.03-11.80, respectively). Compared to Modern Orthodox women, non-Modern Orthodox women were more likely to consult with a rabbi or religious figure when considering genetic testing and other medical decisions. The focus group participants (N=31) confirmed the importance of rabbinic consultation in medical decision-making. Although stigma was not associated with genetic testing uptake in our survey data, it emerged as a prominent factor in decision-making among focus group participants due to its potential impact on marriageability and family.
CONCLUSIONS: We found that non-Modern Orthodox and unmarried women are less likely to seek BRCA genetic testing. Among non-Modern Orthodox women, rabbinic consultation was an important factor in genetic testing decision-making. By understanding the religious and cultural issues regarding genetic testing in the OJ community and by engaging faith-based leaders, we can develop culturally sensitive interventions designed to enhance knowledge and informed choice about BRCA genetic testing, which may facilitate the implementation of population-based genetic screening among Ashkenazi Jews.
