Williamsburg, NY - 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.
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.
The program is unusual not for what it tells people, but for what it doesn’t.
Typically, a person who is sent for or requests genetic screening is told if he or she is a carrier for a wide variety of conditions.
Rabbi Ekstein, though, tells a recent visitor that he didn’t envision Dor Yeshorim that way. “We are a prevention program,” he says. The purpose isn’t to expand an individual’s personal medical knowledge, but to prevent the births of doomed children by alerting potential spouses to the risk.
How much to reveal to people remains a contentious issue in the gene-testing field. Some geneticists argue that scientists still have no grasp of most gene mutations’ relevance, and that sharing information whose meaning is uncertain is potentially harmful. In some cases, people might endlessly worry or alter their lives because of a mutation for which there is no effective treatment or that turns out to be benign; others may ignore medical advice because genes show they aren’t predisposed to a particular condition, even though screening can’t rule out the possibility a disease will develop.
Many believe people have a right to know everything, and withholding any information amounts to a kind of genomic paternalism.
Rabbi Ekstein recognizes that, in some respects, withholding all information other than people’s compatibility may seem old-fashioned in an age when technology can tell people about all kinds of genetic risks. He argues that too often, people don’t consider the “negative part of knowing” one is at risk. Everyone talks about the right to know, the rabbi says, but there should be equal attention paid to “the right not to know.”
Read full article at the Wall Street Journal