By AMY DOCKSER MARCUS
Orthodox Jews Screen for Recessive Diseases Before Marrying, but Are Only Told So Much
NEW YORK—In Williamsburg, a bustling Brooklyn enclave across the East River from Manhattan, a sect of ultra-Orthodox Jews dresses in garb common to 18th- and 19th-century Europe and adheres to even more-ancient religious traditions. Yet they are wrestling with the most modern of questions: When it comes to genetic testing, how much does a person need to know?
The community has deployed a unique screening program that addresses a genetic issue arising from the fact that Jews in Central and Eastern Europe once lived and married within small, tightly bound communities. As a result, Jews who trace ancestry to this region have a higher risk of carrying gene mutations that could lead to bearing children with a number of devastating hereditary genetic conditions.
Many Jews who know their ancestry now get tested to see if they carry such mutations. But in many Orthodox communities, the kind of genetic screening typically used in the wider world is complicated by privacy needs, religious prohibitions, and clashes with some of their communal values.
So community members devised an approach to identify people carrying gene mutations for the same diseases who, if they were to marry one another, might bear children with lethal conditions (such offspring have a 1 in 4 chance of inheriting a so-called recessive condition.)
Rabbi Josef Ekstein, who had four children die of Tay-Sachs disease, a fatal neurodegenerative condition, founded a program called Dor Yeshorim to screen people and create a database with the test results while providing participants with anonymity. Young people—typically from age 17 to their early 20s—who get tested are assigned a personal identification number and birth date without the year. The program screens for nine conditions common among Ashkenazi Jews—those who can trace ancestry to Central and Eastern Europe—and the information is kept in a database by Dor Yeshorim, which means "upright generation" in Hebrew.
Before a couple is betrothed, or sometimes even meet, their families call Dor Yeshorim with the identification data and are told whether the prospective couple is "compatible" or—if both carry a gene mutation for the same disease—"not compatible." In the latter case, the relationship is typically abandoned.
The program is unusual not for what it tells people, but for what it doesn't.