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

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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 ( IF 1.7 ) Pub Date : 2018-01-01 , DOI: 10.1159/000499852
Meghna S Trivedi _{1,

2} , Hilary Colbeth ₃ , Haeseung Yi ₄ , Alejandro Vanegas ₅ , Rebecca Starck ₆ , Wendy K Chung _{7,

8,

9} , Paul S Appelbaum ₁₀ , Rita Kukafka _{5,

11} , Isaac Schechter _{6,

12} , Katherine D Crew _{3,

7,

8}

Affiliation

Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, USA,
Herbert Irving Comprehensive Cancer Center, Columbia University Medical Center, New York, New York, USA,
Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, New York, USA.
Department of Health and Behavior Studies, Teachers College, Columbia University, New York, New York, USA.
Department of Biomedical Informatics, College of Physicians and Surgeons, Columbia University, New York, New York, USA.
Institute for Applied Research and Community Collaboration (ARCC), Spring Valley, New York, USA.
Department of Medicine, College of Physicians and Surgeons, Columbia University, New York, New York, USA.
Herbert Irving Comprehensive Cancer Center, Columbia University Medical Center, New York, New York, USA.
Department of Pediatrics, College of Physicians and Surgeons, Columbia University, New York, New York, USA.
Department of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, New York, USA.
Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, New York, USA.
Achieve Behavioral Health, Monsey, New York, USA.

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.

中文翻译：

了解与接受BRCA1/2基因检测相关的因素在美国使用混合方法的正统犹太妇女中

背景/目标：德系犹太人的 BRCA1/2 突变患病率为 1:40。正统犹太人是一个未被充分研究的人群，其独特的文化和宗教因素可能会影响 BRCA1/2 基因检测的采用。方法：我们使用混合方法，对纽约/新泽西的正统犹太妇女进行了横断面调查和焦点小组调查，以探讨影响 BRCA1/2 基因检测决策的因素。结果：在 321 名可评估的调查参与者中，中位年龄为 47 岁（范围，25-82 岁）；56% 是现代东正教，44% 是 Yeshivish/Chassidish/other；84% 已婚；7% 有乳腺癌或卵巢癌的个人病史。近 20% 的女性接受了 BRCA1/2 基因检测。基因检测应用的预测因素包括现代正统派（比值比 [OR] = 2.31）、已婚（OR = 3.49）、并且有乳腺癌或卵巢癌的个人或家族病史（OR = 9.74）。焦点小组参与者 (n = 31) 确认了拉比咨询在医疗决策中的重要性，并表明耻辱是 BRCA1/2 检测决策中的一个重要因素，因为它对适婚性有潜在影响。结论：为了提高东正教犹太人对 BRCA1/2 基因检测的接受度，了解宗教和文化因素（例如耻辱感和对可婚性的影响）以及让宗教领袖参与提高社区意识至关重要。焦点小组参与者 (n = 31) 确认了拉比咨询在医疗决策中的重要性，并表明耻辱是 BRCA1/2 检测决策中的一个重要因素，因为它对适婚性有潜在影响。结论：为了增加正统犹太人口中 BRCA1/2 基因检测的应用，了解宗教和文化因素（例如耻辱感和对可婚性的影响）至关重要，并让宗教领袖参与提高社区内的认识。焦点小组参与者 (n = 31) 确认了拉比咨询在医疗决策中的重要性，并表明耻辱是 BRCA1/2 检测决策中的一个重要因素，因为它对适婚性有潜在影响。结论：为了增加正统犹太人口中 BRCA1/2 基因检测的应用，了解宗教和文化因素（例如耻辱感和对可婚性的影响）至关重要，并让宗教领袖参与提高社区内的认识。

更新日期：2018-01-01

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