August 7, 2017 Premarital genetic testing in insular communities
A reader asked: How do insular communities ensure that marriages in their communities are not incestuous?
In order to solve problems with marrying within a small gene pool, the Hasidic community does genetic testing. It is run by an organization called Dor Yeshorim.
I experienced this first hand.
This is how the organization explains the process:
Our goal is to make premarital genetic testing easily accessible to all. Dor Yeshorim conducts mass screening drives at high schools, yeshivos and colleges throughout the world. Our fee is significantly below actual cost, subsidized by generous donors who understand the vital importance of the Dor Yeshorim mission. Blood samples are drawn and each participant receives an identification number – that’s it! No names are used in the process to ensure complete confidentiality. In fact, confidentiality is the backbone of our success.
The samples are then sent to a laboratory where a panel of tests is run on the most high tech equipment available. Every step of the screening process is supervised by senior inspectors with multi-tiered and redundant controls. Results are entered into a highly sophisticated database under stringent quality checks. No expense is spared to ensure that the tests are precise and comprehensive.
When an individual is considering a partner in marriage, both parties exchange ID numbers and day and month of birth and call Dor Yeshorim’s easy-access, 24 hour automated hotline to request a compatibility check. Compatibility checks are fast, unlimited and free of charge and results are relayed via a call back to the numbers registered on file.
The test results are compared in-house by our highly experienced staff; if neither or only one is a carrier for a recessive disease, the match is safe and both parties are informed they can proceed. However, if they are both found to be carriers they are informed that the match is incompatible. Dor Yeshorim offers genetic counseling for those found incompatible.
The founding of Dor Yeshorim came after the community dealt with the devastating effects of Tay-Sachs, a condition that presents itself when both partners are carriers for it. In such a small community, this happened quite often. In fact, it happened to the founder of Dor Yeshorim, who dealt with the terrible losses of multiple children by creating mass pre-marital genetic testing. As the organization writes:
Just thirty years ago, genetic diseases plagued the Jewish community; bringing unbearable suffering and heartache to families across the spectrum. The scourge of Tay Sachs was particularly devastating.
Dor Yeshorim was born from one man’s indescribable grief and heartache as he helplessly watched four beautiful children die of Tay-Sachs. Determined to ensure that no parent would ever endure the agony of losing a child to this devastating genetic disease, Rabbi Josef Ekstein galvanized a grass roots organization to eradicate Tay-Sachs forever.
Here was my experience with Dor Yeshorim.
When I was in 11th grade, at 17, the administration in our Hasidic girls’ school organized a day for the organization Dor Yeshorim to come down to school. We all had to bring some money, a release and we all stood in line to give a blood sample. We knew it was done to avoid birth defects. We’d heard of families here and there that had several disabled children because the couple wasn’t “compatible”. We didn’t understand the mechanics (we hadn’t had any sex-ed or understanding of how a baby is genetically connected to its father) but no one wanted to have an incompatible marriage.
Then, when at eighteen and three months my parents found me a match, I had not even met my future husband or seen any pictures of him when my parents called in our two Dor Yeshorim numbers. I remember waiting in knots for the office to open so they could give us an answer. Yes would mean I’d get engaged that night, a no would mean the match was off. At 9:15 am they called to say that everything was okay. Less than twelve hours later, I was engaged.