This is the third part of a series on dating and marriage in the religious Zionist community in Israel. See more topics below.
Dor Yesharim is an organization founded to prevent birth defects in the Orthodox community. I once heard Professor Ari Zivotovsky on the topic of genetic defects (any errors are my own). He explained that the religious Zionist or modern Orthodox community has the biggest problem with genetic testing. In the charedi community, shadchanim (professional matchmakers) are in control and don’t consider a match before getting genetic approval from Dor Yesharim. Secular Jewish couples, who find out after deciding to marry that they test positive for a genetic disease, usually prefer to undergo prenatal testing and a therapeutic abortion if necessary, rather than split up. But few Orthodox Jewish couples want to put themselves in a situation where they will have to decide whether to perform an elective abortion. And no one wants to break up a couple for that reason. See this post on therapeutic abortion in the community.
Leaders of the religious Zionist community have been strong advocates for testing by Dor Yesharim.
Dor Yesharim works like this: The organization approaches high school and yeshiva students, takes blood samples, and runs tests for a variety of genetic diseases. Some of the diseases, like Tay-Sachs, are fatal at a young age and some, like cystic fibrosis, are life-threatening but patients can live to adulthood or longer. All are much more common in Ashkenazi Jews, so those with a sephardi background may not require testing. Some health funds subsidize Dor Yesharim testing, because they provide the service for their patients at any rate.
Individuals do not receive the results of their tests. Instead, they get a personal number. When a suggestion is made, someone must call Dor Yesharim with both code numbers, and an answer is given within a few hours as to whether they are compatible or not. So unless the answer is no, the young couple don’t realize that one of them carries a particular gene. As far as I can tell from the literature, when candidates are told they are a match for one of the genes, they do not find out which disease they carry.
Why not just let individuals test themselves? After all, if they are old enough to get married surely they should be able to handle knowing their genetic status. It all comes down to a stigma. An unreasonable stigma, but that is the reality. Because if one group of people has to be careful about whom they date, and one that doesn’t need to worry, the first group could be at a disadvantage.
Not everyone agrees with the approach of Dor Yesharim. According to an article by Christine Rosen in The New Atlantis:
At first Dor Yeshorim tested only for Tay-Sachs disease, an always-fatal illness. But it soon added testing for a range of other conditions that are not always fatal, including conditions that are late-onset or that range in the severity of their expression—such as cystic fibrosis and Gaucher’s disease. Ten years ago, a spokesman for Dor Yeshorim told the New York Times that the organization would continue to add any and all genetic tests available to its menu of screening options. More recently, in a letter to a Jewish newspaper, Rabbi Ekstein noted that “the genetic panel has expanded beyond Tay-Sachs to include other genetic diseases that display similar inheritance patterns and are fatal or severely disabling.”
“This is what happens when you have people with no scientific orientation who want to do good,” says Rabbi Moshe Dovid Tendler, a professor of medical ethics at Yeshiva University. “The question arises, when do you stop? There are close to 90 genes you wouldn’t want to have. Will this lead to people showing each other computer print outs of their genetic conditions? We’ll never get married.”
Tendler is a trained microbiologist and teacher of Talmudic law. In recent years, he has come to public view for his outspoken defense of embryonic stem cell research and research cloning, and he is a great friend of medical progress. Tendler does not oppose genetic screening, but he has been an unrelenting critic of Dor Yeshorim’s approach, particularly its devotion to nondisclosure of each individual’s carrier status. “My grandparents were born in America. The American ethical and moral values are very important to me,” Tendler says. “The idea that Dor Yeshorim has genetic information and refuses to share it with the person who it belongs to is unfair, irrational, and almost anti-American. If you submit blood, you should be able to have the results.”
When couples in the religious Zionist community are introduced so casually and at such a young age, I am curious about when and how young people are testing for genetic diseases. Are they using Dor Yesharim or not? And who is making sure that no one falls through the cracks? Is testing a requirement before registering for marriage?
Please share your thoughts in the comments.
Earlier parts in the series:
Other posts you may enjoy: