Trivedi Meghna S, Colbeth Hilary, Yi Haeseung, Vanegas Alejandro, Starck Rebecca, Chung Wendy K, Appelbaum Paul S, Kukafka Rita, Schechter Isaac, Crew Katherine D
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,
Public Health Genomics. 2018;21(5-6):186-196. doi: 10.1159/000499852. Epub 2019 Jun 4.
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.
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.
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.
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.
背景/目的：阿什肯纳兹犹太人中BRCA1/2基因突变的患病率为1:40。东正教犹太人是一个研究不足的群体，其独特的文化和宗教因素可能会影响BRCA1/2基因检测的接受度。
我们采用混合方法，对纽约/新泽西的东正教犹太女性进行了横断面调查和焦点小组访谈，以探讨影响BRCA1/2基因检测决策的因素。
在321名可评估的调查参与者中，年龄中位数为47岁（范围25 - 82岁）；56%为现代正统派，44%为极端正统派/哈西德派/其他；84%已婚；7%有个人乳腺癌或卵巢癌病史。近20%的女性接受过BRCA1/2基因检测。基因检测接受度的预测因素包括为现代正统派（优势比[OR]=2.31）、已婚（OR = 3.49）以及有个人或家族乳腺癌或卵巢癌病史（OR = 9.74）。焦点小组参与者（n = 31）证实了拉比咨询在医疗决策中的重要性，并表明由于其对适婚性的潜在影响，耻辱感是BRCA1/2检测决策中的一个突出因素。
为了提高东正教犹太人群体中BRCA1/2基因检测的接受度，了解宗教和文化因素（如耻辱感和对适婚性的影响）并让宗教领袖参与提高社区内的认识至关重要。
