Background. While the prevalence of a pathogenic variant in the BRCA1 and BRCA2 genes occurs in 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 presents challenges to BRCA1 and BRCA2 genetic testing. This study analyzed a dialogue 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 in Grounded Theory and Narrative Research, were utilized to analyze the narratives of key stakeholders and community members in an analysis of qualitative data collected from 49 stakeholders. A content analysis was conducted to identify themes; inter-rater reliability was 71%.
Results. Facilitators to genetic testing were prevention and education, while barriers to genetic testing included negative emotions, impact on family/romantic relationships, cost, and stigma. The role of religious figures and healthcare professionals in medical decision-making were viewed as controversial. Education, health, and community were discussed as influential factors. There were issues around disclosure, implementation, and information needs.
Conclusion. This study revealed the voices of the Orthodox Jewish women (decision-makers) and key stakeholders (influencers) who play a critical role 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.
| Identifer | oai:union.ndltd.org:columbia.edu/oai:academiccommons.columbia.edu:10.7916/9gt3-xz39 |
| Date | January 2023 |
| Creators | Yi, Hae Seung |
| Source Sets | Columbia University |
| Language | English |
| Detected Language | English |
| Type | Theses |
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