Understanding Factors Associated with Uptake of BRCA1/2 Genetic Testing among Orthodox Jewish Women in the USA Using a Mixed-Methods Approach

Meghna S Trivedi; Hilary Colbeth; Haeseung Yi; Alejandro Vanegas; Rebecca Starck; Wendy K Chung; Paul S Appelbaum; Rita Kukafka; Isaac Schechter; Katherine D Crew

doi:10.1159/000499852

Understanding Factors Associated with Uptake of BRCA1/2 Genetic Testing among Orthodox Jewish Women in the USA Using a Mixed-Methods Approach

Public Health Genomics. 2018;21(5-6):186-196. doi: 10.1159/000499852. Epub 2019 Jun 4.

Authors

Meghna S Trivedi^{1

2}, Hilary Colbeth³, Haeseung Yi⁴, Alejandro Vanegas⁵, Rebecca Starck⁶, Wendy K Chung^{7

8

9}, Paul S Appelbaum¹⁰, Rita Kukafka^{5

11}, Isaac Schechter^{6

12}, Katherine D Crew^{7

8

3}

Affiliations

¹ Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, USA, mst2134@cumc.columbia.edu.
² Herbert Irving Comprehensive Cancer Center, Columbia University Medical Center, New York, New York, USA, mst2134@cumc.columbia.edu.
³ Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA.
⁴ Department of Health and Behavior Studies, Teachers College, Columbia University, New York, New York, USA.
⁵ Department of Biomedical Informatics, College of Physicians and Surgeons, Columbia University, New York, New York, USA.
⁶ Institute for Applied Research and Community Collaboration (ARCC), Spring Valley, New York, USA.
⁷ Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, USA.
⁸ Herbert Irving Comprehensive Cancer Center, Columbia University Medical Center, New York, New York, USA.
⁹ Department of Pediatrics, College of Physicians and Surgeons, Columbia University, New York, New York, USA.
¹⁰ Department of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, New York, USA.
¹¹ Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, New York, USA.
¹² Achieve Behavioral Health, Monsey, New York, USA.

Abstract

Background/aims: Ashkenazi Jews have a 1:40 prevalence of BRCA1/2 mutations. Orthodox Jews are an understudied population with unique cultural and religious factors that may influence BRCA1/2 genetic testing uptake.

Methods: 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 BRCA1/2 genetic testing.

Results: 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 BRCA1/2genetic 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 (n = 31) confirmed the importance of rabbinic consultation in medical decision-making and revealed that stigma was a prominent factor in decisions about BRCA1/2 testing due to its potential impact on marriageability.

Conclusion: In order to increase the uptake of BRCA1/2 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.

Keywords: BRCA1; BRCA2; Genetic testing; Orthodox Jewish women.

Abstract

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