Revolutionizing Genetic Screening and Education

As Jewish American Heritage Month comes to an end, the Center for Jewish Genetics is also wrapping up a yearlong Impact Award from Genetic Alliance. The Center is one of seven Impact Awardees funded to expand upon their existing outreach and education programs and demonstrate a significant increase in access to genetic services. The Center for Jewish Genetics is a nonprofit organization based in the Chicago metropolitan area that focuses on educating healthcare professionals, clergy, and people of Jewish descent about the importance of genetic screening.

Over the past year, the Center has expanded and revolutionized their education and screening program in an effort to make genetic services available to a wider range of people. While previous genetic tests used a blood sample, a switch to gene-sequencing has allowed the Center to offer genetic screening using an individual's saliva to test for a wide range of genetic mutations. Participants can complete this test in their own home without the anxiety or inconvenience that is associated with a blood draw. The Center also subsidizes the testing process, making it more affordable and accessible to people with a wider range of income levels. Read more on coverage and reimbursement of genetic testing.

Besides increasing convenience and reducing discomfort, the switch to gene-sequencing has clinical benefits as well. This newer testing methodology provides more accurate information regarding an individual's carrier status.

Because participants are now able to provide samples from home, the Center used the Impact Award to enhance its pre-screening education programs. In the past, the Center held in-person events to provide education and collect samples. This year, the Center switched first to online webinars, and then to a self-directed online course, which gives individuals the opportunity to learn about Jewish genetic diseases and the screening process at any time day or night from the comfort of their home. The course uses interactive prompts and tests to ensure the user understands the presented information, and Center staff can be contacted at any time with questions about the material. When an individual completes the course, the Center's genetic counselor coordinates with the individual and/or couple regarding the next steps in the testing process. The course includes animated videos that can also be used as standalone educational resources, aligning with the efforts of the Center to provide information to the general public about genetic services.

Certain ethnic groups like Ashkenazi Jews have a higher risk of certain genetic diseases and may benefit from genetics education and screening. There are at least 19 genetic conditions known to disproportionately affect individuals of Jewish heritage, and approximately 1 in 4 Ashkenazi Jews is a carrier for one of these conditions. However, the panel offered by the Center includes screening for more than 80 genetic disorders in total. The number of identified conditions and recommendations for testing change frequently, highlighting the importance of repeat testing for individuals planning children several years apart. Genetic testing provides vital information to individuals and couples which they can use when making decisions about family planning. The subsidization, expansion, and transformation of the Center's genetic screening program allow more people to gain these insights into their own health and the health of their future children.

For more information about the Center for Jewish Genetics and their revolutionary program, visit https://www.jewishgenetics.org/register.