Suchergebnisse

Introduction: Although the prevalence of a pathogenic variant in the BRCA1 and BRCA2 genes is about 1:400 (0.25%) in the general population, the prevalence is as high as 1:40 (2.5%) among the Ashkenazi Jewish population. Despite cost-effective preventive measures for mutation carriers, Orthodox Jews constitute a cultural and religious group that requires different approaches to BRCA1 and BRCA2 genetic testing relative to other groups. This study analyzed a dialog of key stakeholders and community members to explore factors that influence decision-making about BRCA1 and BRCA2 genetic testing in the New York Orthodox Jewish community. Methods: Qualitative research methods, based on Grounded Theory and Narrative Research, were utilized to analyze the narrative data collected from 49 key stakeholders and community members. A content analysis was conducted to identify themes; inter-rater reliability was 71%. Results: Facilitators of genetic testing were a desire for preventive interventions and education, while barriers to genetic testing included negative emotions, feared impact on family/romantic relationships, cost, and stigma. Views differed on the role of religious leaders and healthcare professionals in medical decision-making. Education, health, and community were discussed as influential factors, and concerns were expressed about disclosure, implementation, and information needs. Conclusion: This study elicited the opinions of Orthodox Jewish women (decision-makers) and key stakeholders (influencers) who play critical roles in the medical decision-making process. The findings have broad implications for engaging community stakeholders within faith-based or culturally distinct groups to ensure better utilization of healthcare services for cancer screening and prevention designed to improve population health.

<b><i>Background/Aims:</i></b> Ashkenazi Jews have a 1:40 prevalence of <i>BRCA1/2</i> mutations. Orthodox Jews are an understudied population with unique cultural and religious factors that may influence <i>BRCA1/2</i> genetic testing uptake. <b><i>Methods:</i></b> Using a mixed-methods approach, we conducted a cross-sectional survey and focus groups among Orthodox Jewish women in New York/New Jersey to explore factors affecting decision-making about<i> BRCA1/2</i> genetic testing. <b><i>Results:</i></b> Among 321 evaluable survey participants, the median age was 47 years (range, 25–82); 56% were Modern Orthodox and 44% Yeshivish/Chassidish/other; 84% were married; 7% had a personal history of breast or ovarian cancer. Nearly 20% of the women had undergone <i>BRCA1/2</i>genetic testing. Predictors of genetic testing uptake included being Modern Orthodox (odds ratio [OR] = 2.31), married (OR = 3.49), and having a personal or family history of breast or ovarian cancer (OR = 9.74). Focus group participants (<i>n</i> = 31) confirmed the importance of rabbinic consultation in medical decision-making and revealed that stigma was a prominent factor in decisions about <i>BRCA1/2</i> testing due to its potential impact on marriageability. <b><i>Conclusion:</i></b> In order to increase the uptake of <i>BRCA1/2</i> genetic testing among the Orthodox Jewish population, it is crucial to understand religious and cultural factors, such as stigma and effect on marriageability, and engage religious leaders in raising awareness within the community.