Dor Yeshorim (Hebrew: דור ישרים) also called Committee for Prevention of Jewish Genetic Diseases, is a nonprofit organization that offers genetic screening to members of the Jewish community worldwide. Its objective is to minimize, and eventually eliminate, the incidence of genetic disorders common to Jewish people, such as Tay–Sachs disease. Dor Yeshorim is based in Brooklyn, New York, but has offices in Israel and various other countries.
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.
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 US 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.
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:
- 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
- Gaucher's disease (only by request)
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.
The question arises, when do you stop? There are close to 90 [homozygous] 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.
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.
- Rosen, Christine. "Eugenics—Sacred and Profane". The New Atlantis Summer 2003;2:79-89. Online version.
- Leiman, Yehoshua. "Trailblazer in Genetics for the Jewish World and Beyond". Personal Glimpses, supplement to Hamodia, Pesach 5766 (April 2006), page 24-27.
- "Ultra-Orthodox girls rap about their marriage prospects and children". www.thejc.com. Retrieved 2016-05-22.
- "Talented Rapping Orthodox Girls Star in Illicit Viral Hit". The Forward. Retrieved 2016-05-22.
- "Orthodox girls rap on genetic testing in viral video". The Times of Israel. Retrieved 2016-05-22.
- "WATCH: Orthodox girls rap on genetic testing in viral video". The Times of Israel. Retrieved 2016-05-22.
- Chaim Brown (18 May 2016). "Official Statement Regarding Dor Yeshorim Viral Video from 5/18/16". Dor Yeshorim. Retrieved 14 June 2019.
- "Testing that fails some fundamental tests". Jewish Chronicle. Archived from the original on 4 March 2016. Retrieved 12 April 2012.
- "Screening group uses leaflet to rebut critics". Retrieved 12 April 2012.[permanent dead link]
- "Tay Sachs screening is turned into a 'wedding tax'". Archived from the original on 4 March 2016. Retrieved 12 April 2012.
- "Tay-Sachs test stigma letter". Archived from the original on 4 March 2016. Retrieved 12 April 2012.