Washington Heights—Should a frum woman get tested to learn if she carries the BRCA gene mutation—which could indicate that she is at increased risk for breast and ovarian cancer? Many women in our community—especially those having a history of breast or ovarian cancer in their family—struggle with this question. Many others are only vaguely aware of the screening test, and uncertain or ignorant as to whether getting screened has any personal relevance to them.
Not many women in our community are aware that while the average person carries a 1 in 400 chance of having a BRCA mutation, Jewish individuals of Ashkenazi descent carry a 1 in 40 chance. And for those carrying the BRCA 1 or 2 gene mutation, lifetime risk levels for breast and ovarian cancer are as high as 40–60 percent.
How can women make informed choices about whether and when to get screened? Should there be any community norms or standard approaches to these issues—in the same vein as there now are, for example, in relation to premarital testing for genetic incompatibility?
To explore these critical and compelling community issues, the Institute for Applied Research and Community Collaboration (ARCC), in partnership with researchers from Columbia University Medical Center’s Department of Medicine and Biomedical Informatics (CUMC), held two, two-hour focus groups this past Sunday, April 26, at K’hal Adath Jeshurun in Washington Heights—one with married women and one with single women.
The groups, led by Dr. Rivka Starck, explored the women’s personal stories and experiences relating to breast cancer genetic screening, as well as the personal, communal, and sociocultural factors that might weigh in their decisions for or against getting screened. The women also reported on their levels of understanding about breast cancer and its risk rates, and, after hearing an informative presentation on breast cancer risk and prevention from Dr. Katherine Crew, Assistant Professor of Medicine at Columbia, suggested ways of educating our community about this critical topic.
The focus groups come on the heels of an earlier research study conducted by ARCC and CUMC—an online survey about breast cancer prevention and risk perception completed by 520 Orthodox Jewish women this past winter. Both studies are part of a larger project funded by CUMC’s Irving Institute for Clinical and Translational Research, a pilot study on Community-Based Participatory Research in partnership with ARCC.
Dr. Crew of CUMC said that “although this is a highly educated group of Orthodox Jewish women, there were significant knowledge gaps about BRCA genetic testing.” The rich data that emerged from the survey and the groups will, collectively, “inform policies to help make BRCA genetic testing more acceptable and accessible to women, since options are now available for screening and prevention of breast and ovarian cancer.”
“By bringing the rigor of clinical research to the community we can help improve knowledge and decision making for the women and daughters of our community,” adds Dr. Yitzchak Schechter, ARCC’s founder and Executive Director. He continues, “What is exciting is that we are using this research partnership to express the deepest Torah values of ‘v’nishmartem me’od l’nafshosechem.’ We intend to share our findings with rabbanim, community leadership, and the community at large, so that important decisions, policies, and their communal implications can be considered, discussed, and debated in the most informed way. For ARCC, this is a means of serving as a bridge between community, clinicians, research, and a future of better health.”
ARCC, together with CUMC, plans to use the findings from the community research as a platform for further discussion at a stakeholder’s meeting to be held in June. There, community leaders, medical and breast cancer experts, and other relevant constituencies will have an opportunity to brainstorm about the study findings’ implications for community interventions and education. By collaborating with the community in investigating behaviors, knowledge, and attitudes in regard to this topic, the investigators look forward to being able to suggest approaches that might speak to the health needs and concerns of women in our community. Ultimately, G-d willing, this will facilitate earlier detection of women’s cancers, and a reduced mortality rate in our communities.
For further information on this and other ARCC projects, visit www.arccinstitute.org, call 845-445-7631, or email [email protected]
The Institute for Applied Research and Community Collaboration (ARCC) was founded to help address some of the most pressing health and social issues facing our frum communities today. Through collaboration with leadership, ARCC works to improve community well-being by providing reliable, research-based knowledge and insight to guide policy and decision making.