Dor Yeshorim's work to save children from genetic diseases

Update: see Rav Moshe Feinstein - Medical tests and bitachon

Tablet Magazine     An office sits on a humble corner on Wythe Avenue in Williamsburg, a Brooklyn stronghold for hipsters and Hasidim alike. Above a locked and graffitied metal security gate is a weathered sign, its gold letters scratched and peeling. “Dor Yeshorim: Committee for Prevention of Jewish Genetic Diseases,” it reads. It’s unclear if anyone works there and whether or not the office is now just an idle space below closed-curtained apartment windows. The organization operates quietly, some would even say secretively: Phone numbers linked to Dor Yeshorim are automated, its website outdated and often unclickable, and its services little-known to those outside the Orthodox world.

The Brooklyn-based organization, which now offers Jewish genetic testing across the United States, Canada, Israel, and Europe, works to eliminate any chance that two carriers of the same genetic disease will even date, avoiding the heartache of having to abandon a progressing relationship, or worse, having a child with a fatal or debilitating genetic disorder. After conducting genetic screening, Dor Yeshorim assigns identification numbers that correspond to its clients’ genetic data. Before or soon after meeting, potential partners exchange ID numbers and dial an automated hotline to check genetic compatibility—a phone call that almost always determines if a relationship will move forward or end.

Described as both a matchmaking service and a preventative health organization, Dor Yeshorim provides an anonymous medium for clients to check compatibility. “You have reached Dor Yeshorim, the internationally recognized program for the prevention of Jewish genetic diseases,” answers the hotline’s automated male voice. “To submit a request for compatibility, press 1. To check compatibility, you will need to submit both the male and female’s nine-digit Dor Yeshorim identification number and both their dates and months of birth, not the year of birth,” the robotic voice instructs.

Since Dor Yeshorim’s founding in 1983, numerous Jewish genetic testing services have emerged worldwide. Secular Jews might choose to get screened through their physician’s office or at a hospital-based program. New York City’s Mount Sinai, NYU, Columbia, and Beth Israel hospitals all have medical genetics departments that offer testing. There are also community and nonprofit screening programs, as well as commercial labs. As genetic science advances, screening and access to genetic data have become easier and more affordable for the general population. But Dor Yeshorim differs, in one important way: Those tested never find out their results.

The only information provided is whether a pair is compatible—meaning that the two individuals are not carriers of a mutation for the same disease. If a boy and girl are incompatible, Dor Yeshorim indicates that continuing the relationship is “not advisable” and offers genetic counseling. Meanwhile, everyone’s test results remain locked in a confidential database. [...]