Blessed by Science: How Genetic Medicine Changed a Strictly Religious Community – Facts So Romantic

A group of Hasidic Jews walking the streets of Anna i Adria via Wikipedia

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 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 couples before they had a child, but it hadn’t caught on in Hasidic community, mostly due to mistrust of the outside world and the stigma a diagnosis could bring to a family. (See Alexandra Ossola’s previous post on testing for Tay–Sachs among Ashkenazi…

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