To test for the BRCA (breast cancer) susceptibility gene or not? That vexing question is one faced by many women, including Orthodox Jewish ones. But women—even those who have been advised by their doctors to go for the testing—too often feel ill-equipped to make an informed decision about whether testing is right for them.
Now, a second-round survey launched on March 15 in Riverdale and Edison/Highland Park will gauge Orthodox Jewish women’s knowledge, attitudes and decision-making preferences about BRCA genetic testing, and use the findings to fashion decision-support tools and messaging which Jewish women can utilize to make informed decisions about what’s best for them.
To advance understanding on this issue, the online survey will invite participation from Orthodox Jewish women ages 25 and over in the New York and New Jersey areas. The study is being conducted in stages, with Riverdale and Highland Park/Edison being the first locations.
The survey is part of an ongoing, multifaceted research project begun in 2014 and being conducted by the Institute for Applied Research and Community Collaboration (ARCC) in partnership with Columbia University Medical Center (CUMC). The study comes on the heels of a similar, smaller study which ARCC and Columbia fielded in winter 2015. That study found that even among Orthodox women with college and graduate-level educations, less than half had adequate genetic testing knowledge or breast cancer risk perceptions.
The survey will be distributed via community listservs.
“We want to alert the community to this study, so that when they receive an email about it through their shul listserv or other channels, they’ll understand what it’s all about and take the time to participate. The more women who participate in the survey, the more reliable and meaningful the study’s findings become. We really want to capture responses from a wide range of the Orthodox community, and are doing our best to have a fully representative group. To that end, we hope to also make the survey available in a paper format in the future in order to distribute the survey to women who may not utilize listservs or the internet,” says Dr. Yitzchak Schechter, director and founder of ARCC.
“Women carrying a BRCA1 or BRCA2 gene mutation have elevated lifetime risks of getting breast and ovarian cancer of 35-84% and 10-50% respectively. While women in the general population have a 1 in 400 chance of carrying the BRCA gene, Ashkenazi Jewish women have a 1 in 40 chance, so understandably, this is an issue of critical interest to the Jewish community,” says Dr. Katherine Crew, director of the Clinical Breast Cancer Prevention Program at CUMC.
“Breast cancer takes a substantial toll on the Jewish community at large, and the Orthodox Jewish community is not immune to that,” notes Schechter. “But we have found in our earlier studies that Orthodox women struggle with some unique challenges and cultural considerations when it comes to risk prevention.”
Those “unique challenges” include socio-religious factors such as the role of halachic considerations and rabbinic counsel in shaping women’s testing decisions, as well as concerns about stigma as it may affect women’s shidduch prospects. The study includes questions that explore how these considerations determine Orthodox women’s testing choices, if at all.
“This study,” adds Schechter, “seeks to learn more about what those considerations are, and then to use the insight gained to develop educational materials and programs so that Orthodox women can better understand their own personal risk profile, and then make educated decisions about how to respond.”
Among other tools, the findings will be used to help develop an informative interactive digital tool for women called RealRisks, as well as a risk navigation tool for primary care providers, both tailored to the cultural needs of Orthodox Jewish women.