In 1983, the wife of ultra-orthodox Brooklyn rabbi Yosef Eckstein, gave birth to their fifth child. But the couple’s happiness was short-lived: The child was soon diagnosed with Tay–Sachs disease, a genetic disorder that affects the nervous system. Over time, the child would experience developmental delays, become paralyzed, and die before the age of five.
Since Tay–Sachs is passed on through genes and Hasidic Jews don’t allow abortion, they felt there was nothing they could have done. Eckstein learned about efforts in the larger Jewish community to reduce the prevalence of Tay–Sachs disease by doing genetic tests for couples before they had a child, but it hadn’t caught on in the Hasidic community, mostly due to mistrust of the outside world and the stigma a diagnosis could bring to a family. So Eckstein developed a genetic screening program that would prevent two Tay–Sachs carriers from having children, thereby reducing the prevalence of the disease, while keeping the results as discrete as possible. He called it Dor Yeshorim, the righteous generation.
So Eckstein devised a way to screen for the recessive gene while still keeping the results anonymous. High schoolers who were not yet engaged would have a blood sample drawn for the DNA test. But they would never see their results—instead, the results went to Dor Yeshorim, while each person would receive an identification number. Later on, when a marriage was proposed, the families or the shadchan would call the Dor Yeshorim hotline with the two anonymous identification numbers for the potential couple.
The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion and analysis. Read full original post: Blessed by Science: How Genetic Medicine Changed a Strictly Religious Community