World
Charedim play the numbers game in an effective worldwide screening system
November 24, 2016 12:01
By, Daniel Sugarman
2 min read
ByDaniel Sugarman, Daniel Sugarman
The Charedi community is not generally regarded as being at the forefront of technological innovation within the Jewish world.
So it may surprise some to learn that a Charedi genetics screening programme has been running for 30 years, with almost 400,000 people tested to date.
Dor Yeshorim, translating as "Upright Generation", was founded in 1983 in New York by Rabbi Josef Ekstein, who watched four of his own children die from Tay-Sachs.
It was not easy to convince communal and rabbinic figures of the importance of a genetic screening process. But three decades later, Dor Yeshorim is a household name within the strictly Orthodox community, not just in America, but also in the UK, Israel, Canada and many other territories.
Initially targeting Tay-Sachs, the programme has over the years expanded to cover many other genetic diseases disproportionately impacting on Jews, including Cystic Fibrosis, Familial Dysautonomia and Canavan Disease.
It's possible for someone never to know they are a carrier
Strictly Orthodox young men and women are tested before dating. Unlike other screening systems, however, those going through the testing process do not receive the results. Instead, they are provided with a number.
When a match is suggested, both parties contact Dor Yeshorim with their numbers and are told whether the match is compatible from a genetic standpoint. The organisation currently answers 25,000 compatibility questions annually.
It is possible for someone never to know they are a carrier of a genetic condition as their status would only be revealed if their potential match had also tested positive as a carrier for the same condition.
Explaining the secrecy behind the process, the organisaton explains: "Everyone wants the very best for their children's future. If Dor Yeshorim was to disclose testing results, those who are not carriers would certainly feel relief. But what about the boys and girls who turn out to be carrying a genetic disease? What does one do with that knowledge? Announce to the public 'I am a carrier?' Share the information with the shadchan [matchmaker] and jeopardise shidduchim before they even begin?
"Even the most highly educated individuals have difficulty using intellect to dominate the emotions of knowing that he or she, or a potential mate, carries a genetic disease. To avoid any stigmatisation, and based on the dictates of numerous Torah luminaries, Dor Yeshorim's infrastructure was therefore created with inherent confidentiality. This is no way negates the intelligence of the general public or their ability to comprehend and assess results."
It is a system that works extremely efficiently. Many genetic diseases are now almost unheard of within the Charedi community.
The programme relies heavily on donations although, like Jnetics, there is a charge for screenings. It has received some statutory support, with New York State and New York City putting in $1 million between 2005-2007 (the only years' figures available).
On its website, it says: "As a non-profit organisation, Dor Yeshorim depends on the generosity of worldwide donors to help subsidise the astronomical costs of ongoing research, screening and genetic guidance. Your donation today can ensure tomorrow's healthy generations."
