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Whether you think about it a lot, a little, or not at all, genetics affects your community’s health. As a community health educator with the Norton & Elaine Sarnoff Center for Jewish Genetics, I share critical information about Jewish genetic health with at-risk communities. The Sarnoff Center provides education and services in support of the genetic health of the Jewish community and focuses on genetic disorders that are more common among Jews than in the general population, including Tay-Sachs disease, Canavan disease, Gaucher disease, and others – as well as hereditary cancers, including those related to BRCA gene mutations.
As a Jewish community leader, you, too, have an important role to play to increase awareness about these diseases. Genetics may seem complicated, but even simple messages can go a long way toward informing our community. Here are five of the most important things to know:
One in four people of Jewish ancestry carries a recessive Jewish genetic disorder, which means they are at risk of passing a genetic disease to their children. Carriers are generally healthy, and likely have no way of knowing the potential risk to their family. When it comes to hereditary cancer, Jewish people are 10 times more likely to carry a BRCA mutation than people in the general population, and BRCA mutations can dramatically increase lifetime risk of cancer in both men and women.
With every passing year, the scientific and medical communities learn more about how to manage genetic information and reduce related risks. There are national and local programs that offer subsidized carrier screening to help couples learn their risks of passing disorders on to their children. Testing for hereditary cancer mutations has never been more accessible. Genetic counseling is a first important step, and although the process can be expensive, individuals of Ashkenazi Jewish ancestry often qualify for insurance coverage when they have a family history that indicates they could be at risk for hereditary cancer.
Couples that find out they are both carriers for the same condition have a variety of options to start a healthy family together. Individuals who have a BRCA mutation can manage their risk through enhanced screening, medication, and/or risk-reducing surgery. Learning about one’s genetic risk can be intimidating, but at the same time it is empowering. The more information we have, the more we can do to protect our health and that of our families.
There are important ways you can help protect and preserve the health of our community. You can put Jewish genetics on the educational agenda at both a community and individual level. When speaking with newly engaged or newly married congregants, take the opportunity to inform them about carrier screening – a critical aspect of family planning for Jewish and interfaith couples. When you talk to congregants facing a cancer diagnosis in the family, ask if they have spoken with their care team about genetic counseling. Include resources on your congregation’s websites and bulletin boards to direct families to more information.
You may feel that you don’t know enough to share information about Jewish genetic health. There is no need for congregational leaders to be experts – they can support their communities just by sharing resources. A variety of wonderful organizations exist to support families in learning about Jewish genetic health risks, offer subsidized screening, manage hereditary cancer diagnoses and BRCA mutations, and support individuals living with Jewish genetic disorders.
Many people feel that discussing Jewish genetic health can be “scary.” There may be challenges to discussing genetic health in the Jewish community, but there are also opportunities for starting those conversations. You have the ability to reframe these conversations and show your communities that this information can be empowering and, indeed, lifesaving.
Want to learn more? Register for the Sarnoff Center’s upcoming webinar, Everything You Need to Know About Jewish Genetics (But Are Afraid to Ask), scheduled for Wednesday, July 25th from 12-1 p.m. CDT. Contact Becca Bakal at RebeccaBakal@juf.org or 312-357-4717 with questions. The Norton & Elaine Sarnoff Center for Jewish Genetics is a supporting foundation of the Jewish United Fund of Metropolitan Chicago.