Prevention Before the Cure: How Dor Yeshorim Is Eradicating Genetic Disease Among the Jewish Populat
When Rabbi Yosef Eckstein’s first child was born, everything seemed fine. Over time, however, it became apparent that something was wrong. Every day there was further deterioration in the child’s development. Rabbi Eckstein and his wife went from doctor to bewildered doctor until finally—after two whole years—they got the dreaded diagnosis: Tay-Sachs disease.
This diagnosis was catastrophic in multiple ways. Not only was it essentially a death sentence for their child, it was a death sentence for additional children as well. Tay-Sachs is just one of many genetic diseases found to be most prevalent in the Ashkenazi Jewish community. The fact that one of their children had it meant that both parents were carriers—and that meant that all of their children had a 25% chance of having the disease. The Ecksteins lost four children to Tay-Sachs.
As if that tragedy was not enough, the disease cast a mark of Cain on their family in the shidduch world. People were very hesitant to marry into a family of known carriers of Tay-Sachs. Even though there is no danger of having the disease if one of the parents is tested and found not to be a carrier, potential matches preferred not to get involved.
Rabbi Eckstein decided something needed to be done. The technology for genetic testing was available in those days, but there were a few main problems with it: one was the expense and lack of easy access to it within the Jewish community; the other was the stigma and the weight of the anxiety carried around by people who were found to be carriers. The carrier status only has medical significance if two carriers of the same disease marry each other, in which case their children have a 25% chance of having the disease. But someone found to be a carrier will need to divulge this information to all potential matches, and, like what happened to Rabbi Eckstein’s family members, their shidduch prospects may be significantly harmed.
Was there, Rabbi Eckstein wondered, a way to make genetic testing accessible to the Jewish community and to get couples tested for compatibility without burdening them with the knowledge that they are carriers?
After consulting the gedolim of the time, he found an answer—and founded Dor Yeshorim.
Dor Yeshorim is a nonprofit organization that offers premarital genetic screening tests to individuals or through mass screening drives at high schools, yeshivot and colleges throughout the world. They screen a staggering 20,000 individuals every year. Their groundbreaking system utilizes cutting-edge testing technology under strict rabbinic and medical supervision, and to avoid the stigma and emotional burden of being found to be a carrier, they developed a confidential system that does not reveal the results even to the person who was tested; instead, they assign ID numbers and simply inform potential matches whether they are genetically compatible or not.
At a Dor Yeshorim screening, individuals are asked to provide their date of birth, ancestry (Ashkenazi, Sephardi, Convert or Non-Jewish origin), maternal and paternal grandparents’ country of origin and a phone number to be kept on file. The price of testing is highly subsidized thanks to generous donors and, at least in Israel, participation of kupot cholim.
Once the paperwork has been filled out, an individual ID number is issued. It’s very important not to lose this number, as it will be the only way to verify your identity and if you lose it, you may need to be retested.
A small blood sample is then taken and sent to a laboratory, where a panel of tests is run using cutting-edge technology. Dor Yeshorim uses blood samples rather than saliva because they provide more reliable results. Every step of the screening process is supervised by senior inspectors, and there are rigorous, multi-tiered quality controls to ensure that the results are reliable. Then the results are entered into a highly sophisticated database under equally stringent quality checks.
When considering a partner in marriage, both parties can exchange Dor Yeshorim ID numbers and day and month of birth, and call Dor Yeshorim’s automated hotline to request a compatibility check. They will be prompted to enter this information as well as a phone number where they can be reached. A response regarding compatibility will only be given if the number provided matches the one registered on file. If you need to be called at another number, you’ll need to verify your information.
The information is then processed by Dor Yeshorim’s staff and the test results of the two numbers are compared. If neither or only one of them is a carrier for a recessive disease, the match is safe and the parties are informed that they can proceed. If they are both found to be carriers, they are informed that the match is not compatible, and genetic counseling is offered.
One of Dor Yeshorim’s trained representatives will call the number on file with the results within a few business hours. To ensure privacy and confidentiality, the individual must answer the phone in person to receive the results; they will never be released to a third party, including a relative or a shadchan. If you miss the call, you’ll be asked to call the hotline and reenter the information. When the Dor Yeshorim representative reaches you, you’ll be asked to verify the ID numbers and birth dates of both parties, so it’s important to keep them handy.
Which Diseases Should We Test For?
If you receive genetic counseling at one of the regular testing centers, you may be handed a very long list of recommended tests and find yourself at a loss when selecting which of them to do. Research has shown that genetic counseling and prenatal testing in Israel tends to be more “aggressive” and pro-medical abortion than in other countries, so a religious couple may not know how seriously to take their recommendations.
Dor Yeshorim developed a testing policy under the guidance and support of leading genetics experts alongside rabbinical authorities. The Dor Yeshorim policy is to test only for common, incurable recessive diseases which present serious health issues or risk of fatality, and for which the testing methods to determine carrier status are reliable and conclusive. Every disease is painstakingly researched, scrutinized and evaluated to determine whether it meets Dor Yeshorim’s criteria, and approved tests are added to the Dor Yeshorim panels in conjunction with the recommendations of the ACMG (American College of Medical Genetics), the Israeli Ministry of Health, and the Dor Yeshorim Medical Advisory Board.
Dor Yeshorim’s current standard Ashkenazi panel consists of 10 diseases. They offer an optional testing panel of seven additional Ashkenazi diseases, which are less common, but have symptoms as severe as those on the standard panel. The Sephardi panel, which was recently developed in response to growing incidence of genetic disease in the Sephardi population, includes 17 diseases.
Why Not Test for Everything?
In many cases, the manifestation of a genetic disease and the symptoms associated with it are not clear-cut, so a diagnosis may—in the best-case scenario—do nothing but cause undue worry, and in the worst-case scenario, prevent a happy marriage between compatible individuals and the birth of healthy Jewish children who will contribute positively to society. While there are thousands of possible genetic diseases, global scientific experts recommend testing for only a handful of them. Over-testing has its risks, too.
Additionally, Dor Yeshorim has found that disclosing ambiguous carrier status (in a case where the test is not conclusive) is more harmful than helpful to the community at large, given that the goal is to help create matches rather than break them. Inconclusive or ambiguous results pose moral, ethical and potential medical dilemmas to which there are no easy answers. For that reason, Dor Yeshorim invests many resources in discovering reliable testing methods for as many recessive genetic diseases as possible, and collaborate with other industry experts to unravel the mysteries of the human genome and its effect on health.
Eradicating Genetic Disease
The more individuals screened and the more awareness about genetic testing pervades our communities, the closer we will be to creating a community free of fatal and debilitating genetic disease. Dor Yeshorim hopes to provide the conditions that will make genetic testing easy, accessible, affordable and safe for young Jewish couples across the globe.
About the Organization
Dor Yeshorim is a nonprofit organization that provides premarital genetic screening to Jewish communities worldwide. For more information, visit www.doryeshorim.org.