Jewish Genetic Disease Consortium

There is a common misconception that Tay-Sachs, a genetic disease that is almost always fatal by the age of five, has been eradicated from the Jewish population. In fact, in 2009, 1 in 25 Jews of Ashkenazi descent continue to carry the gene that causes Tay- Sachs. In addition to Tay-Sachs, there are 10 other genetic disorders common to the Jewish population, many of which are appallingly painful, fatal or require a lifetime of care. Thanks to the Jewish Genetic Disease Consortium (JGDC), an association of 11 disease- specific advocacy groups, one simple blood test can determine if individuals are carriers of those genes. Even in an era where parents are hyper-informed about the health of their children, there is often a lack of information, or incorrect information, about Jewish genetic diseases. Therefore, JGDC is “helping to lead the charge toward a healthy community.” 

In a challenging economic environment, the Presidents of the 11 disease-specific groups have chosen to band together in order to increase efficiency, better serve the Jewish community, and build relationships with insurers to increase coverage for testing for these diseases. JGDC also runs campus and community screenings, educates rabbis on how to discuss screening with engaged couples, and administers a “Grand Rounds” program for health care professionals. This program pairs an expert on Jewish genetic diseases with the parent of a child with a genetic disease in order to educate medical professionals about the physical, psychological and cultural aspects of genetic screening and diseases. 

Many evaluators “love that these organizations are working together” because “they would otherwise never be able to coordinate testing.” While JGDC has already reached tens of thousands of at-risk Jews, they seek to test 100,000 people within  ve years and educate hundreds of thousands of parents, doctors and religious leaders in the process. Slingshot staff applauds the innovation taking place on a medical and organizational level and looks forward to experiencing the impact of this work on the generations to come.