Before Marriage: How to Prevent Genetic Diseases?

The story of Dor Yeshorim, the organization conducting genetic testing for young adults of marriageable age, begins with the unfathomable personal tragedy of Rabbi Yosef Ekstein from New York, USA. The Ekstein's first child, born in 1965, developed normally until six months old, when he began to lose muscle tone, suffer seizures, and have swallowing difficulties, later becoming blind. The child was diagnosed with Tay-Sachs disease at age two and passed away at four. The Eksteins had eight more children, three of whom also suffered from Tay-Sachs and died before their fourth birthdays.

After burying his fourth child, Rabbi Ekstein found the strength, amid his grief, to think clearly about the calamities that befell him. "I thought there might be a purpose to what I experienced." He learned that scientists had developed methods to examine people's genomes to determine if they carried severe diseases like Tay-Sachs. Though it was too late to help him and his wife, Rabbi Ekstein conceived an idea to aid the entire Jewish community: to create a system that would test for recessive diseases in marriage candidates. Recessive diseases require both parents to be carriers of a defective gene for each child to have a 25% risk of developing the disease, like Tay-Sachs and other severe illnesses common in the Jewish community, such as dysautonomia and cystic fibrosis.

Following consultation with Torah scholars and according to their guidance, he founded Dor Yeshorim in 1983. The organization, initially operating only in the US, committed to a policy of maintaining the confidentiality of the tested individuals. Every person tested—usually young adults on the cusp of engagement—is given a number. When a family seriously considers a specific match, the compatibility of the numbers is checked. A response of 'the match is unsuitable' is given only if both candidates are carriers of the same disease, preventing unnecessary fears and stigmas from attaching to families with carriers.

There is no dispute about Dor Yeshorim's success: the number of Jewish children born with Tay-Sachs in the Jewish community in the US and Canada dropped from 40 cases a year to just 3. Among those tested by Dor Yeshorim, the number of births of children with Tay-Sachs is zero. This success led to Dor Yeshorim centers opening worldwide, including in Israel, where yeshivas and seminaries have long allowed Dor Yeshorim to conduct testing days for their students. To date, in no fewer than two thousand cases, Dor Yeshorim has provided critical information that led young couples to seek their matches elsewhere, saving them from unimaginable heartbreak.

Until recently, however, there was a misconception among the public regarding Dor Yeshorim. The widespread assumption was that its genetic tests are relevant only for Ashkenazi Jews. This assumption likely stems from the fact that the organization began testing for Tay-Sachs, a disease indeed almost exclusive to Jews of Ashkenazi descent. However, many diseases added later to the testing package also exist among Mizrahi Jews. For example, you will find almost no Ashkenazi children at a camp for children with cystic fibrosis—Ashkenazi couples are tested by Dor Yeshorim, making the disease rare among them. The affected children are mostly Mizrahi, whose parents did not know the importance of genetic testing. Naturally, interethnic marriages do not eliminate the need for testing: recently, a story was shared on a popular religious forum about a mixed couple—a Yemenite boy and an Ashkenazi girl—who were almost engaged when the bride's mother insisted on the Dor Yeshorim test. The result? Both were carriers of cystic fibrosis, and they had to part ways sadly.

(Carrier couples can indeed bring healthy children into the world through pre-implantation genetic diagnosis as part of in vitro fertilization, but this involves complicated, complex, and often costly fertility treatments. There is no reason to place young couples in such a complicated relationship if carrier status can be discovered before marriage)

Another reason Dor Yeshorim was perceived as an Ashkenazi-only issue is the longer existence of genetic research on Ashkenazi communities. Ashkenazi Jews have significant genetic homogeneity, whether they are from Romania, Poland, or Germany, making it easy to gather genetic information about them. In contrast, Mizrahi Jews have much greater genetic diversity, leading to many genetic mutations causing diseases among Mizrahim being discovered only recently. However, once these mutations were identified, Dor Yeshorim added relevant tests for Mizrahi Jews to its testing package.

The lack of awareness among Mizrahi Jews regarding the need for genetic testing from various diseases led Sephardic Chief Rabbi Yitzhak Yosef and other rabbis to issue a letter last week urging Mizrahi Jews to undergo Dor Yeshorim tests before marriage. "Recently," writes Rabbi Yosef, "many cases have reached the association of Mizrahi families who, unfortunately, also encountered severe genetic diseases, leading the association to invest considerable effort to bring recommended tests to the Mizrahi community as advised by the Health Ministry, thus preventing them immense sorrow and suffering".

Rabbi Ekstein, of course, welcomes the Chief Rabbi's support and hopes it will encourage young Jews from all backgrounds to be tested by Dor Yeshorim before announcing their engagement. "One cannot imagine the great value of this, nor the awful damage that can result from avoiding tests." No, he does not think forgoing genetic testing is a demonstration of faith. "It's like crossing Fifth Avenue in New York with your eyes closed. It’s simply foolish." As someone who lost four children in a generation when genetic testing was not yet developed, Rabbi Ekstein certainly knows what he is talking about.