Non-Jewish Company Following the Lead of Dor Yesharim – But Without the All-Important Confidentiality


dor-yeshorimMark Henderson reports at TimesOnline: When the Dor Yeshorim organisation was set up in New York and Israel in 1983, Tay-Sachs disease was rife in the Jewish community. Rabbi Joseph Ekstein, its founder, lost four children to the condition. The mutated gene that causes the disorder, which usually kills children before the age of 8, is ten times more common among Ashkenazi Jews (of European descent) than in most other ethnic groups. Jewish marriage customs made it highly likely that two carriers would start a family together, with a one in four risk that every child would be affected.All that has changed. Of ten babies born with the condition in North America in 2003, none was Jewish, and only one child with Tay-Sachs was born in Israel that year. The reason was Dor Yeshorim’s genetic screening initiative. Jewish people are now routinely tested for Tay-Sachs status, and the community’s matchmakers do not pair carriers together. When two carriers do marry, they are offered embryo screening.

The new genetic test developed by Counsyl, a Californian start-up company, is now attempting to do for more than a hundred other genetic conditions what Dor Yeshorim did for Tay-Sachs. By informing prospective parents about the recessive mutations they carry, it should substantially reduce their risk of having children with an inherited disease.

“What we’re doing is simply a scaled-up version of the Jewish community’s successful effort to eradicate Tay-Sachs disease through universal screening,” said Balaji Srinivasan, Counsyl’s co-founder and chief technology officer.

There are more than 6,000 recessive Mendelian diseases, most of them fairly rare. The most common, cystic fibrosis, is carried by about one in 25 Europeans. “But while they are individually rare, they are collectively common,” Dr Srinivasan said. “They affect roughly one in 280 births.”

Screening for these disorders is already offered by the NHS to people with a family history, and to members of at-risk ethnic groups such as people of African descent for sickle-cell anaemia, as well as Ashkenazi Jews.

The Counsyl test, however, breaks new ground by offering a screen for 109 conditions to any adult of reproductive age, regardless of background risk. The goal is to highlight dangers that might be avoided through embryo screening, prenatal testing and abortion or by using donated sperm.

Many leading geneticists support the idea of universal screening. Steven Pinker, of Harvard University, who is an adviser to Counsyl, said: “Universal genetic testing can drastically reduce the incidence of genetic diseases, and may very well eliminate many of them.” When he and his wife took the Counsyl test, it informed them that they were both carriers for familial dysautonomia, a neurological condition with symptoms that include speech and movement problems.

Other geneticists are sceptical, however. Frances Flinter, a consultant clinical geneticist at Guy’s and St Thomas’ Hospital, said the risks for most people were too low to make screening worthwhile. “I find the tone quite concerning, this emphasis on elimination of preventable disease,” she said. “It has a eugenic flavour that makes me really uncomfortable.”

She is also concerned about the accuracy of the test, and the fact that it includes only a fraction of the known recessive disorders. “There’s a risk of false reassurance.If you have a family history of genetic disease, or you are in an ethnic group with an increased risk, I would advise going to your GP for referral if appropriate to a clinical genetics centre. I would not recommend it for the wider population.”

Her concerns are shared by Alastair Kent, director of the Genetic Interest Group, a charity for families affected by inherited disease. “The danger is that you create fear in a situation where it isn’t necessary. It’s another stick with which to beat pregnant women. Most of these conditions are incredibly rare,” he said.

The Bridge clinic in London, which will be the first in Britain to offer the test, will provide it only with genetic counselling. Charlotte Emmerson, who will advise patients at the clinic, said: “The results can have implications not only for reproductive choice but also for the rest of your family. If you are a carrier for cystic fibrosis, there is a good chance that your brother or sister is too. It is so important that patients are fully informed before they go ahead.”

Counsyl will start selling the test over the internet later this year.

Recessive genetic diseases

Cystic fibrosis The most common recessive genetic disease in Britain: about one in 25 people of European origin are carriers of the gene responsible, and thus potentially at risk of having affected children. Causes mucus to damage the organs, particularly the lungs and pancreas. Often kills in childhood or young adulthood. It affects about 8,500 people in Britain.

Spinal muscular atrophy Degenerative condition which damages the nerves of the spinal cord, leading to progressive neuro-muscular weakness and death. There are several forms of the disease, with onsets at different ages: the most serious lead to death in infancy, others to severe disability. About one in 50 carry the gene responsible.

Sickle cell anaemia Blood disorder, in which red blood cells become sickle-shaped and cannot carry oxygen efficiently. It is most common among people of African and Caribbean origin, up to one in 20 of whom carry the recessive gene responsible. Carrying a single copy of the gene confers some resistance to malaria, which may explain why the disease is common in certain populations.

Beta thalassaemia Blood disorder that causes severe anaemia, which requires regular blood transfusions throughout life. It can be fatal. It is very common among people of Mediterranean descent, especially those from Cyprus and Sardinia.

Diastrophic dysplasia A very rare form of dwarfism that causes very short stature and limbs, though skull size is often normal. While it can cause breathing problems in childhood, it is not normally associated with major health issues. It affects about 1 in 100,000 births.

{Times Online/Noam Newscenter}


  1. As a board member of Dor Yeshorim for many years, I can unequivocally state that this type of testing is totally against the successful ANONYMOUS AND CONFIDENTIAL Dor Yeshorim system. It is also against our Da’as Torah, as Rav Moshe Feinstein zt”l clearly issued his objections to creating unnecessary panic by giving test results. That is why and how Dor Yeshorim developed their system; by instituting a confidential number checking system that obviates that concern. And that is why Dor Yeshorim has been so successful, B’siyata D’shmaya. The confidential checking system developed by Dor Yeshorim is the only means for Torah Jews to utilize for pre-marital genetic screening.
    The unbelievable success of Dor Yeshorim, as proven by the hundreds of thousands of Torah Yiddin who have successfullly used it, should be proof enough to anyone in our camp as to the need to always follow Da’as Torah, and not one’s ignorant emotions.
    There are other non-truths in the above article; most blatant is the line that states “when carriers do marry, they are offered embryo screening”.
    Chas V’Shalom.
    The above article is a disservice to Klal Yisroel.

  2. Thank you for posting, Rabbi Golding! I was appalled when I read the line about embryo screening. Thank you for setting the record straight.

  3. To Rabbi Golding: There is no 100% Confidentiality in Dor Yeshorim. Once a prospective Shidduch get the word, No Match, both now know they are carriers, most likely of Tay Sachs. Other also find out. But it is not so terrible, they find Shidduchim with non-carriers and everything is fine, except that the children may be carriers; big deal! When the whole genetic disease scare hit the scene, sure people panicked. But due to the tremendous work of Dor Yeshorim, people are now confident that even if they may be carriers, the disease will not have a chance to materialize. Therefore, Reb Moshe’s erstwhile objections are B”H not much of an issue any longer.

  4. Rabi G, tizku l’mitzvos. Not to go off on a tangent but let’s start pushing using DY properly, i.e. early on in the process. I know of people who called in the results the day the kids got engaged. The idea is not to bring heartbreak, at any point in the process.

  5. dor yeshorim? i got my test at a real hospital lab with detailed results for all conditions and disease, including several not tested for and not disclosed by dor yeshorim

  6. rabbi golding is wrong and what he says is not true. how dare you tell people that your business is the only way acceptable by daas torah? HOW DARE YOU?

  7. Everybody’s right here 🙂

    For the frum community, the Dor Yesharim approach is probably the best way to go. The possibility of stigma hampering our already anxiety-laden shidduch process makes it necessary.

    For other groups, where this is not the usual way in which marriages come about, confidentiality of the DY style is not necessary. Of course, anyone who wants to know their carrier/non-carrier status can use other services, but for the actual shidduch questions, go with DY.

  8. We tested at a hospital lab and were delighted with the information given to us. We were tested for every disease possible and given full results. When we tested positive for something, we met with terrific geneticists. And it was paid for 100% by insurance.

    When questions came up later we were able to consult with the same geneticist, who remembered us.

    I’m a big fan of testing at hospital labs.

  9. “There are other non-truths in the above article; most blatant is the line that states “when carriers do marry, they are offered embryo screening”.
    Chas VÂ’Shalom.”

    This was in comment #1. What does that mean? Anybody in a marriage where both are carriers has the option of IVF with PGD diagnosis, which is a wonderful option, should you meet and marry your bashert, as I did, even though we were both carriers for something.

    We both tested positive for Gaucher’s Disease. It was good to know this, as our daughter was tested in utero for the disease. She has it. We were able to meet with specialists before she was born, and from birth, she has been treated by a pediatrician who is familiar with Gaucher’s and by top specialists.

  10. Millions upon millions of Jews participated in the Tay-Sachs screening campaign, and most of them did NOT work with Dor Yeshorim and did NOT keep their carrier status anonymous.

    The confidential was not “all important” as millions were screened with out. Now we can screen for even more diseases!! What these fellows are doing is a mitzvah for all Jews!

  11. I reserve the right to know the results of my tests. Chas v’shalom I should have a medical test and not be told the results!