Blessed by Science: How Genetic Medicine Changed a Strictly Religious Community

In 1983, Yosef Eckstein an ultra-orthodox rabbi in Brooklyn, New York, had reason to be happy: His wife had just given 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. This was the Ecksteins’ fourth child born with the disease, which was typically only found in one of every 3,600 children born to Ashkenazi Jewish families.

The couple was heartbroken, but since Tay–Sachs is passed on through genes and ultra-orthodox, or , 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.