Dor Yeshorim

Dor Yeshorim (Hebrew: "upright generation", cf. Psalms 112:2) 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.

Dor Yeshorim is based in Brooklyn, New York, but has offices in Israel and various other countries. It announces testing sessions in community newspapers and Orthodox Jewish high schools as well as on its website.

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Background

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 homozygotes.

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

Policy

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.

Methods

  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; however, there is a strange hesitation to contact the organization until the couple are considering further dates.

History

Dor Yeshorim was started in the 1980s by Rabbi Joseph Ekstein, who lost four children to Tay-Sachs disease between 1965 and 1983^[1]. In a 2006 interview, Ekstein revealed^[2] 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 community to Dor Yeshorim's involvement^[2]. 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.

Criticism

The system has received criticism from both within as well as outside the community. The largely Eastern-European Orthodox community of Antwerp, for example, uses alternative methods of testing because of misgivings about the procedure.

Another criticism that is being leveled against the method used by Dor Yeshorim is its resemblance to eugenics^[3]. However, the program is not intended to affect allele frequency, but rather the occurrence of homozygosity.

Additionally they only test for recessive disorders that require two carriers, and thus are only concerned with eliminating the incidence of active cases of the disease. The testing has no impact on the incidence of heterozygous carriers, and they will not test for disorders that manifest with solely one carrier. (See Policy section above.)

References

1. ^ George, Alison. "The Rabbi's Dilemma". New Scientist 14 Feb 2004. Online version.
2. ^ ^{a b} Leiman, Yehoshua. "Trailblazer in Genetics for the Jewish World and Beyond". Personal Glimpses, supplement to Hamodia, Pesach 5766 (April 2006), page 24-27.
3. ^ Rosen, Christine. "Eugenics—Sacred and Profane". The New Atlantis Summer 2003;2:79-89. Online version.