Dor Yeshorim (Hebrew: דור ישרים - "upright generation", cf. Psalms 112:2), also called Committee for Prevention of Jewish Genetic Diseases, is an organization that offers genetic screening to members of the worldwide Jewish community. Its objective is to minimize, and eventually eliminate, the incidence of genetic disorders common to Jewish people, such as Tay–Sachs disease.
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.
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. Ideally, it should be checked prior to the first date, as there are no charges applied to any particular query. Some couples wait until the third through fifth date because of the perception that participants go on too many first dates to make a pre-first date query viable and asking for a check after a first date indicates that the requester is over enthusiastic about the match.
In a 2006 interview, Ekstein revealed 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, this program operates in the USA and in Israel.
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 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.
Dor Yeshorim, as per policy, does not disclose the individual’s carrier status.
Dr. Fred Rosner, M.D., FACP an assistant Dean and professor of medicine at Albert Einstein College of Medicine, and Professor of Medicine at Mount Sinai School of Medicine has only praise for Dor Yeshorim.
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 Professor 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", when in fact free screening is available under the UK's national health service.
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 Rabbi Bezalel Rakow of Gateshead, who wrote “To deviate from the established path is to risk awesome pitfalls,”. Rabbi Rakow was in fact 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.
- Leiman, Yehoshua. "Trailblazer in Genetics for the Jewish World and Beyond". Personal Glimpses, supplement to Hamodia, Pesach 5766 (April 2006), page 24-27.
- Rosen, Christine. "Eugenics—Sacred and Profane". The New Atlantis Summer 2003;2:79-89. Online version.
- "Testing that fails some fundamental tests". Jewish Chronicle. Retrieved 12 April 2012.
- "Screening group uses leaflet to rebut critics". Retrieved 12 April 2012.
- "Tay Sachs screening is turned into a ‘wedding tax’". Retrieved 12 April 2012.
- "Tay-Sachs test stigma letter". Retrieved 12 April 2012.