*Avi was diagnosed with Crohn’s disease as a young child. While he has occasional symptom flare ups, he leads a full life that is not limited by his illness. Regardless of this fact, although the “shidduch crisis” normally works in favor of young men, Avi isn’t reaping the benefits of the excess available women.
As soon as young ladies, or more importantly their parents, hear of Avi’s condition, they immediately dismiss him as potential husband material. Avi has begun to wonder if he should be as forthcoming about the fact that he has Crohn’s disease in the future.
*Rena has Type 1 diabetes. Other than checking her blood sugar regularly, diabetes hasn’t slowed Rena down in any way. Although her doctor has assured her that she will live a full life and should have no problem having healthy pregnancies due to her condition, potential suitors and their families think otherwise.
She was advised by her rabbi to give matchmakers basic information about her condition, but this approach seems to have backfired. Often, Rena is set up with young men who have been through harrowing life threatening illnesses which have a good chance of recurrence. She has also been set up with men who have handicaps that greatly affect their daily lives. Rena realizes that she has been placed on the shadchanim’s “alternate list.”
This unspoken alternate list is for “tainted” individuals who have conditions that might be genetically passed down to children or who are imperfect in other obvious ways. Apparently Rena’s diabetes, which as a compliant patient has little effect on her day to day life, has rendered her damaged goods in the frum dating world.
*Malka has been having an internal battle. Her married 28 year old sister was diagnosed with early stage breast cancer and tested positive for the BRCA1 mutation gene. Word spread around the community about her sister’s diagnosis just as Malka was entering the shidduch scene. Now matchmakers are telling her that potential suitors are concerned that Malka might also have this terrible mutation – would she be willing to get tested?
It’s not that Malka hasn’t thought about getting tested for the sake of her own health, but at 21, if she tests positive, where will that leave her? No one will want to marry her with a positive result, and she will also be faced with the agonizing decision of when to have a mastectomy. Would she keep the diagnosis to herself and tempt fate by waiting to have a mastectomy until after marriage?
Even without testing and a definitive answer, she is already getting rejected based on the fear that she might harbor this defective gene. If she tests negative, then the fears will be put to rest. However, if she tests positive, her hopes of getting married will be all but ruined. Perhaps it’s better to remain in the dark if the results are positive – at least she can honestly tell anyone who asks that she doesn’t know?
I remember reading an article in the Wall Street Journal that described the Jewish organization, Dor Yeshorim. Dor Yeshorim screens unmarried Jews of European descent for recessive genetic conditions to prevent marriages between two recessive carriers. Before a couple even goes out on a date, they can call the organization with their identification numbers to check if they are compatible. If they aren’t, plans for the couple to date are abandoned.
The interesting thing about Dor Yeshorim, unlike many genetic testing services that have popped up in recent years, is their focus on privacy. In fact, the results are kept so private, that even the tested individual doesn’t know whether they have tested positive for any of the several conditions the organization screens for (such as Tay-Sachs disease, Familial dysautonomia, Cystic fibrosis, Canavan disease, Glycogen storage disease (type 1), Fanconi anemia (type C), Bloom syndrome, Niemann–Pick disease, Mucolipidosis type IV and Gaucher’s disease by request).
One of the quotes that stood out in the Wall Street Journal article was from Dor Yeshorim’s founder, Rabbi Josef Ekstein, who had four children die of Tay-Sachs disease:
“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.”
Those who use Dor Yeshorim aren’t told for which diseases they are carriers unless they insist. Among the concerns: If word were to get out in the tightknit Orthodox community, the stigma of carrying a faulty gene might make it hard to find a spouse not just for that person, but for his or her siblings as well. And screening is done only for recessive diseases, for which each parent must contribute a faulty gene in order for a child to be affected.“
At the time, I bristled at the idea that people couldn’t get access to their test results. However, seeing how the community uses medical information that hasn’t been kept private to prevent the marriage of those unfortunate enough to have a medical condition (or potential medical condition), I can understand the rationale behind Dor Yeshorim’s policy.
Think of how common it is for a young couple to be healthy upon marriage, yet with time and age, health issues crop up. What if our grandparents and parents had tests that would have warned their future spouses of the health afflictions that awaited them in future years? Would any of them have married? Would any of us have even been born? How many bayis neeman b’yisroel’s are being thwarted right now in the name of frum eugenics?
*Avi, Rena, and Malka are based on a compilation of individuals and their stories. Any similarities between the individuals described and an actual person is purely coincidental.
