The night Jeremy made me a raft and a river out of cardboard was when I first told him I loved him. By the time he proposed to me — after a scavenger hunt through New York City, on a boat in Central Park — we already knew we were going to get married. Like so many Modern Orthodox couples, we had started discussing the future fairly early in our relationship. In fact, having been unofficially engaged for two months, we had already looked at halls and chosen a band.
Most important, by the time we told the world of our engagement, Jeremy and I had also debated genetic testing and were going through an anxious eight weeks awaiting our results.
As Ashkenazi Jews at elevated risk for passing on a gamut of dreaded disease to our children, including Tay-Sachs carriers in Jeremy’s family, there was no question about getting screened. But from the perspective of the most traditional Orthodox communities, our relationship of four months had gone on much longer than it should have before learning about our genetic compatibility.
Because many Orthodox couples meet through matchmakers, the individuals can prevent genetic incompatibility — and a possibly heart-wrenching end to a relationship — simply by never dating anyone who carries the same recessive disorder.
That’s why an unusually secretive genetic screening organization, Dor Yeshorim, which works within the shidduch system of the Orthodox world, was established in the 1980s.
The idea of Dor Yeshorim — literally, “upright generations” — is to prevent genetic disorders within the Jewish community in a way that carriers don’t feel stigmatized.
Each client is tested and issued a personal identification number (PIN). When a couple wants to check their compatibility, they call with their respective PINs. Within two days, the organization, based in Brooklyn and with offices in Israel and England, will check if both individuals are carriers of the same recessive gene and report only whether the pair is genetically compatible — or not. It will not, however, reveal the genetic details of the results.
Thus, those who use Dor Yeshorim will not be told whether they are carriers of any of the 10 common Ashkenazic diseases that Dor Yeshorim tests for.
On the other hand, their marriage chances will not be thwarted by anyone learning that information. The individual will simply know who they should or should not marry.
Five years ago, when I was in 12th grade at Yeshiva of Greater Washington, an Orthodox school in Silver Spring, Md., my high school brought in Dor Yeshorim to test our senior class and, ostensibly, help us in the quest for the marriage we would all presumably be pursuing in the very near future. I sat in my school’s one-room library and got my blood drawn along with my classmates, then was assigned a PIN associated with my results.
My fiancé made it clear that he wanted no part of that system. Jeremy doesn’t think Dor Yeshorim works for our circle of Modern Orthodoxy, and I agree: Knowledge is too highly valued and genetic health too strongly stressed for our genetic makeup to be kept secret from us.
Others also have been critical of Dor Yeshorim, even from within other circles of Orthodoxy. Some believe it does not test for enough diseases — it currently tests for 10 diseases for which Jews are more likely to be carriers of recessive genes. Other genetic services test for 18 such diseases.
Rabbi Moshe Tendler, a leading Modern Orthodox rabbi at Yeshiva University, said in a recent interview with me: “I believe Dor Yeshorim has no function right now.” While he commended them on their “one contribution,” namely, making the ultra-Orthodox community aware of the need for genetic testing, Rabbi Tendler said their job is done. He pointed to their practice of anonymity, which he believes is “medically unethical.”
Chani Wiesman, a genetics counselor at New York’s Montefiore Medical Center and Yeshiva University’s Program for Jewish Genetic Health, agrees that people should be told their carrier status. “This is information about your health that will end up being useful,” she said. “The Dor Yeshorim model has a lot of benefits, and it appeals very well to a lot of communities, but our process is a little more involved.” Plus, she added, “Dor Yeshorim doesn’t test for everything. They are currently testing for only half of the conditions for which testing is available clinically.”
Despite many phone calls requesting comment, officials at Dor Yeshorim declined to respond.
Even though I’d already been tested by Dor Yeshorim and respected the reasoning for their methodology, I agreed with Jeremy that we should be screened through another organization. As students of Yeshiva University, this turned out to be quite simple.
Yeshiva holds annual subsidized genetic screenings for its students in association with Albert Einstein College of Medicine. As its pamphlet informed us, Yeshiva’s genetic screening program believes “individuals should take ownership of their genetic health status, and should be empowered early on with the information they will need for building healthy families.”
Knowing your results, explained Wiesman, helps people “feel more empowered than stigmatized.”
This screening just happened to be held around the time we were deciding to get engaged, and both of us were tested for the 18 diseases. We also received brief personal counseling and a 10-minute group session explaining recessive genes and the risks of inheriting them.
Having a stranger stab me with a needle was nothing compared to the anxious wait that followed. Whatever the results, there was no way Jeremy and I would break up. Neither of us could imagine not marrying the other. Jeremy wasn’t just the love of my life, or any number of romantic clichés; he was my life. Breaking up would be like burning all my worldly possessions and moving permanently to a cave: idiotic and counter-intuitive. It just wasn’t an option.
Not knowing whether my younger sister was a carrier simply added to the mystery.
She and her husband, who got married in January, used Dor Yeshorim. They were found to be compatible, something they checked for only after dating a few months, which was a relief. The system worked for them, as it does for many Orthodox couples. And over the years, it has helped to drastically reduce the number of cases of Tay-Sachs and other dire conditions among Jewish children.
Still, my sister’s experience did not reveal anything about our family’s genetic risks.
Jeremy and I discussed our options. It was possible we would marry despite knowing that our children would be at risk for any number of terrible diseases.
Statistically, if we were both carriers for the same disease, each of our children would have a one in four chance of having that disease.
We would face expensive, painful in vitro fertilization (IVF) procedures to assure any embryo I carried was disease-free. Or we might face the even more expensive and tortuous psychological reality of having a child suffer with a degenerative disease. Neither of those options sounded good, but they were the only options we had.
For us, there was no turning back. And it seems that many in our Modern Orthodox peer group find themselves in similar straits as they fall in love outside the strict boundaries of matchmaking and discover, late in the dating game, whether they are biologically compatible.
One day when Jeremy was out of contact, traveling in Peru, his parents called me. His envelope had arrived, and they didn’t want to open it without his permission.
A few hours later, Jeremy happened to call me to say hi, and quickly our anxiety was lifted: Jeremy wasn’t a carrier for anything. So, even if I proved to be a carrier, our children would be risk-free for those 18 diseases.
It would be two more weeks before I got my own good news — I was not a carrier, either.
On November 15, Jeremy and I will stand under the chuppah, looking forward to the prospect of parenthood some day, with at least 18 worries wiped from the list.
Simi Lampert has been blogging about her Modern Orthodox engagement at the Sisterhood. Contact her at email@example.com