Dor Yeshorim

History

In both the Ashkenazi and Sephardi Jewish communities, there is an increased rate of a number of genetic disorders such as Tay–Sachs disease, an autosomal recessive disorder that goes unnoticed in carriers, but is fatal within the first few years of life in almost all homozygotes. (The exception is the rare adult-onset Tay–Sachs, which is normally not fatal but is incapacitating.)

Orthodox Judaism generally opposes selective abortion. Although preimplantation genetic diagnosis (PGD) is often approved by Halakha, it is a difficult and costly process. By avoiding marriages between "carriers", the incidence of the disorders decreases without having to resort to such methods.

The name Dor Yeshorim, meaning "upright generation," comes from Psalms 112:2.

In a 2006 interview, Ekstein said that while four of his first five children died of Tay-Sachs disease, none of his children born subsequent to the founding of Dor Yeshorim suffered the condition. The same interview quotes a New York neurologist who credits the near-total disappearance of the condition from the ultra-orthodox community due to Dor Yeshorim's involvement.

In 2005, Dor Yeshorim created a new program for the collection and storing of Umbilical Cord Blood. Called Kehila Cord, the program operates in the USA and in Israel.

In 2016, Dor Yeshorim received media attention when a rap video of two schoolgirls beat-boxing about their marriage prospects was shared in the Orthodox Jewish community. The organisation claimed to be "very disturbed by the whole thing" and that "...it is below our dignity as an organization to promote such a thing". Subsequently Dor Yeshorim also issued an official statement distancing itself from the video.

Operations

Dor Yeshorim screens only for recessive traits that give rise to lethal or severely debilitating disorders, providing prophylactic, rather than diagnostic services. They do not screen for disorders arising from dominant gene mutations, as these cannot be prevented by informed mate selection.

Dor Yeshorim advocates anonymous testing. Individuals are tested during large sessions in Jewish schools and processed anonymously with only a PIN linking the sample with the candidate.

At present, testing is offered for the following disorders:

When two members of the system contemplate marriage, they contact the organization and enter both their PINs. When both carry a gene for the same disorder, the risk of affected offspring is 25%, and it is considered advisable to discontinue the plans. In the context of shidduchim, the "carriership check" is often run within the first three dates, to avoid disappointments and heartbreak.

Praise and criticism

The system has received praise and criticism from both within as well as outside the community.

There has been criticism leveled against the method used by Dor Yeshorim by 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.

He feels that the system is "affirming eugenics" which he sees as "the idea that Jews are the repository of bad genes".

Fred Rosner, a professor of medicine at Albert Einstein College of Medicine, said that "I think Dor Yeshorim performs a tremendous service...screening is a wonderful thing to do, and if you can avoid the birth of a potentially lethally affected child, that is a good thing."

Dor Yeshorim has been criticised for withholding patient results, for declining to publish its financial records and for not testing anyone who has already been tested elsewhere, by Geoffrey Alderman, who says that Dor Yeshorim fails some fundamental tests itself. Critics including the Association for the Prevention of Jewish Genetic Diseases, have described Dor Yeshorim in the UK as a "Wedding tax".

Dor Yeshorim was also criticised for allegedly seeking to convince the Jewish community it must, for “religious reasons,” use its service, by circulating a letter from Bezalel Rakow. Rakow was a signatory to a subsequent letter stating that "Every individual has the privilege to perform the test in a manner consistent with his desires.” Additionally, the Jewish Chronicle published a letter by a Tay Sachs carrier, who was hurt by a Dor Yeshorim organiser's insinuation, that there was stigma attached to being a Tay-Sachs carrier.