Redwood City, CA – California Company Developing Universal Genetic Tests Based On The Dor Yeshorim Concept

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    Redwood City, CA – 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.

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    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.


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    9 Comments
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    Anonymous
    Anonymous
    14 years ago

    There Is A Thin Line Between A Lack Of Bitochon/Not Being A Tomim im hashem elokecho And hishtadlus. .

    ShatzMatz
    ShatzMatz
    14 years ago

    This program can hardly be compared to Dor Teshurim. Dor Yeshurim works with a strictly anonymous system and with the highest ethical standards. The Councyl system works by openly reporting the information, thereby branding certain individuals ‘genetically inferior’. This certainly smells of Eugenics. BTW, for $300 you can send a blood sample to Google and they will do a complete genetic profile, including advising you of any deseases you are likely to get.

    Anonymous
    Anonymous
    14 years ago

    “Counsyl will start selling the test over the internet later this year.”
    You can purchase online right now

    Anonymous
    Anonymous
    14 years ago

    Dor Yeshorim was not the only organization involved in the fight against Tay-Sachs. Lots of other Jewish organizations told people what mutations they carry. The Google test by 23andMe also tells you openly what mutations you carry.

    http://www.nytimes.com/2003/02/18/science/18DISE.html?pagewanted=1

    It became an international effort, fueled by passion and involving volunteers who went to synagogues, Jewish community centers, college Hillel houses, anywhere they might reach people of Ashkenazic ancestry and enroll them in the screening and counsel them about the risks of having babies with the disease. If two people who carried the gene married, they were advised about the option of aborting affected fetuses. Some matchmakers advised their clients to be screened for the gene, and made sure carriers did not marry.

    Thirty years later, Tay-Sachs is virtually gone, its incidence slashed more than 95 percent. The disease is now so rare that most doctors have never seen a case.

    Emboldened by that success and with new technical tools that make genetic screening cheap and simple, a group is aiming even higher. It wants to eliminate nine other genetic diseases…

    Anonymous
    Anonymous
    14 years ago

    http://www.nytimes.com/2003/02/18/science/18DISE.html?pagewanted=2

    She decided that the solution was to offer testing to the world’s Jews rather than wait for people to ask for it. “I can’t see any other way to get this fixed,” Dr. Gross said.

    The group worked with the Trust for Jewish Philanthropy, which convened experts on genetic disease research and testing and asked them for advice.

    “The opinion I had was, `Why not?’ ” said Dr. Charles R. Scriver, a geneticist at McGill University in Montreal. In previous decades, Dr. Scriver directed screening in Montreal to identify carriers of Tay-Sachs and beta-thalassemia, a genetic disease that causes severe anemia.

    High school students were told about the diseases and offered an opportunity to be tested and given information about the results. Although those who chose to be tested learned about their genes, no one else could see their results.

    Proffessor
    Proffessor
    14 years ago

    “The Counsyl test, however, breaks new ground by offering a screen for 109 conditions to any adult of reproductive age, regardless of background risk.” sounds like there are high chances that 2 people will match up with at least 1 of the diseases.

    Rabbi holtzberg
    Rabbi holtzberg
    14 years ago

    I heard that Rabbi and Mrs. Holtzberg, the kedoshim from Mumbai lost 2 out of their 3 children to tay sachs. Moshele was the only son born without the condition.

    Rabbi Yosef C. Golding
    Rabbi Yosef C. Golding
    14 years ago

    As a board member of Dor Yeshorim for many years, I can unequivocally stste 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.