Friday, January 2, 2015

Dor Yeshorim's work to save children from genetic diseases

Update: see Rav Moshe Feinstein - Medical tests and bitachon

Tablet Magazine     An office sits on a humble corner on Wythe Avenue in Williamsburg, a Brooklyn stronghold for hipsters and Hasidim alike. Above a locked and graffitied metal security gate is a weathered sign, its gold letters scratched and peeling. “Dor Yeshorim: Committee for Prevention of Jewish Genetic Diseases,” it reads. It’s unclear if anyone works there and whether or not the office is now just an idle space below closed-curtained apartment windows. The organization operates quietly, some would even say secretively: Phone numbers linked to Dor Yeshorim are automated, its website outdated and often unclickable, and its services little-known to those outside the Orthodox world.

The Brooklyn-based organization, which now offers Jewish genetic testing across the United States, Canada, Israel, and Europe, works to eliminate any chance that two carriers of the same genetic disease will even date, avoiding the heartache of having to abandon a progressing relationship, or worse, having a child with a fatal or debilitating genetic disorder. After conducting genetic screening, Dor Yeshorim assigns identification numbers that correspond to its clients’ genetic data. Before or soon after meeting, potential partners exchange ID numbers and dial an automated hotline to check genetic compatibility—a phone call that almost always determines if a relationship will move forward or end.

Described as both a matchmaking service and a preventative health organization, Dor Yeshorim provides an anonymous medium for clients to check compatibility. “You have reached Dor Yeshorim, the internationally recognized program for the prevention of Jewish genetic diseases,” answers the hotline’s automated male voice. “To submit a request for compatibility, press 1. To check compatibility, you will need to submit both the male and female’s nine-digit Dor Yeshorim identification number and both their dates and months of birth, not the year of birth,” the robotic voice instructs.

Since Dor Yeshorim’s founding in 1983, numerous Jewish genetic testing services have emerged worldwide. Secular Jews might choose to get screened through their physician’s office or at a hospital-based program. New York City’s Mount Sinai, NYU, Columbia, and Beth Israel hospitals all have medical genetics departments that offer testing. There are also community and nonprofit screening programs, as well as commercial labs. As genetic science advances, screening and access to genetic data have become easier and more affordable for the general population. But Dor Yeshorim differs, in one important way: Those tested never find out their results.

The only information provided is whether a pair is compatible—meaning that the two individuals are not carriers of a mutation for the same disease. If a boy and girl are incompatible, Dor Yeshorim indicates that continuing the relationship is “not advisable” and offers genetic counseling. Meanwhile, everyone’s test results remain locked in a confidential database. [...]


  1. R. Moshe Feinstein was against Dor Yesharim testing because it violated תמים תהיה עם ד' אלוקיך. His sons are still against it. Could someone give an explanation of this opinion?

  2. That's slander. He gave his blessings.

  3. Rav Moshe Feinstein wrote a teshuva which is published in Igros Moshe in favor of genetic testing

    EH IV 10 21

    שו"ת אגרות משה אבן העזר חלק ד סימן י

    אם יש לבדוק למחלת טיי סאכס קודם הנישואין.

    י"ח אדר השני תשל"ג. למע"כ חתני כבני הרב הגאון מוהר"ר משה דוד טענדלער שליט"א.

    הנה בדבר הילדים שנולדו שלפי הטבע חיים זמן קצר כשנתים ושלש ומתים הנקרא טיי - סאכס והם נולדים מאב ואם ששניהם יש להם סבה זו שאף שאין זה חסרון להם בעצמם אירע שנולדין מזה ילדים כאלו, ואם יש זה רק לאחד מהם לא אירע זה, ויש לידע זה מבדיקה בהדם של האיש והאשה, אשר אז כשידע הבחור או הבתולה שיש להם חסרון זה יראה ליקח לאשה בתולה כזו שאין בה חסרון זה, והבתולה שיש בה חסרון זה תראה להנשא לבחור שאין בו חסרון זה, ורוצים לידע דעתי העניה אם מן הראוי להבחור או להבתולה להשתדל לידע זה, ואם טוב לידע בזה אם לעשות בדיקה זו בקטנותם או רק כשיגיע זמנם להנשא, ואם לעשות זה באופן פרסום או בצנעא, עיינתי בזה וזהו הנראה לע"ד כי אף שהוא מיעוט קטן ילדים נולדים כאלו ושייך לומר על זה הקרא דתמים תהיה עם ה' אלקיך וכפרש"י בחומש שם שכתב התהלך עמו בתמימות ותצפה לו ולא תחקור אחר העתידות, מ"מ כיון שעתה נעשה זה באופן קל לבדוק יש לדון שאם אינו בודק את עצמו הוא כסגירת העינים לראות מה שאפשר לראות, ומכיון שאם ח"ו אירע דבר כזה הוא להורי הילד צער גדול מאד מן הראוי למי שצריך לישא אשה לבדוק את עצמו. ולכן טוב לפרסם הדבר ע"י עתונים ואופנים שידעו העולם שאיכא בדיקה כזו.

    אבל ברור ופשוט שצריך להעשות הדבר בצנעא שלא ידע בחור אחד מחברו ובתולה אחת מחברתה, וגם הרופא אשר יעשה אצלו הבדיקה לא יגלה לשום איש כי אף שהרופאים מעידין שאם יקח אשה שאין בה חסרון זה וכן כשהיא תקח איש שאין בו חסרון זה אינו כלום לא יאמינו הרבה בני אדם ולא יוכלו להשיג שידוך שלכן צריך הדבר להיות בצנעא, ולכן לא טוב הדבר לעשות בקבוץ רב כמו בישיבות ובתי ספר וכדומה.

    וגם כפי שידוע כחות הנפש שרוב בני אדם סובלין הרבה מהעצבים שלהם שנקראו נערוון שמצייר להאדם דבר קטן לגדול וחשש קטן לחשש גדול בפרט במדינה הזאת כידוע, שלכן ח"ו לעשות בדיקה זו לבחורים צעירים שעדיין אין חושבין בענין נישואין והרוב הוא שעד עשרים אין חושבין בזה ואין לדבר אליהם כלל בענין זה. וגם לבד זה מכיון שהדבר צריך להיות בצנעא שלא ידעו אחרים מזה, הוא דבר קשה מאד לפני בחורים צעירים להיות בעלי סוד וזה יזיק לעצמן ולאחרים. ובתולות שדרכן להנשא כשהן צעירות אין לעשות בדיקה זו לפחות מבת שמונה עשרה שנה, ואם יזדמן בבחור אחד או בתולה אחת ירצו להנשא קודם הרי הוא מיעוטא דמיעוטא שאין לחוש לזה וגם מכיון שהדבר נתפרסם הרי יותר נוטה שיודעין מזה.

    ובענין הקרן (פאנד) לזה שהוא מנכרים ומיהודים שאינם שומרי תורה שיש להם שיטה אחרת שעושין הפלה להעובר שנבדק והוא ולד כזה, שזה הוא דבר אסור שרופאים שומרי תורה לא יעשו דבר אסור כזה איני רואה צורך ותועלת לרופאים שומרי תורה שיהיו ג"כ שייכין לקרן, ואם יש צורך ותועלת לענין דברים המותרים ליכא בזה איסור, אך יזהרו שלא יראה שגם הרופאים שומרי תורה מסכימים להתיר הפלת עוברים, אבל כל מה שאפשר שהרופאים שומרי תורה לא יהיו שייכין להם הוא טוב ביותר.

    חותנך כאביך, אוהבך בלו"נ, משה פיינשטיין

  4. As the article notes, there is a medical ethics issue that people should be told their risks (perhaps not at age 20, when yeshiva students are really immature about these things) and appropriate counseling can be taken.)

    Also, many ethicists say this is not a reason to cancel a wedding.

    Really requires more public discussions.

  5. First of all, what R' Moshe said or didn't say is not so relevant. Last I checked, he died almost 30 years ago, and the organization does totally different tests now then it did then. As to the actual point, I heard from his son R' Reuven that he was against. How this squares with his teshuva, I do not know.
    The main issue with Dor Yesharim is that they choose to play God. They are currently the only option for this type of service in the frum community, and they have decided what to check for. In addition, they deny people they ability to make an informed decision as to what risks they would be willing to take. The prognosis and care for many illnesses has changed a lot, and will continue to change for the better. For them to refuse to divulge information, and to decide on their own that a match should be terminated, is a matter that should be subject to greater public debate.

  6. They are very secretive. Just try to find out:
    1. What they test for and how the tests where chosen.
    2. Why they don't test for many other problems.
    3. If their testing methods are up-to-date - quick and cost-effective.
    4. What statistical followup they do to evaluate their relevance.
    5. Who they share their anonymous data with for thorough analysis and study to better serve the community
    6. Who oversees their processes and results and test choices
    They have successfully created a secret society monopoly which can't be challenged nor competed with.
    Their effectiveness and true service can and must be increased many-fold via revealed and reviewed processes.

  7. Machon puah says even in cases where amenioscentisious (?sp?) Is done, there is a low risk of bad results. Thus, even rav moshe's last paragraph in this tshuva is not necessarily relevant. They recommend continuing with a pregnancy, despite a "bad" amneo test.

    Regarding db's comment, with today's manipulation of shidduchim, can we trust an anonymous organization? It seems they are run by chassidim. Who don't really care about such issues. And if the test costs $200, who is paying? I don't see any fundraising. With a minimum of 10,000 new boys and girls in shidduchim every year, were talking about 2 million per year. I presume more than 10,000 per year. Are there any mistakes, any breaches of confidentiality? Medical ethics reviews?

  8. No one is stopping anyone from doing any tests they might want to. Anyone who wishes to find out his or her risks can do so. However, if you want to avail yourself of the Dor Yesharim service, you need to follow their guidelines. I don't see why this is a problem.

  9. They have done the community a tremendous service. Anyone who knows a Tay-Sachs family understands this. Even those who don't know such a family (which are, thanks to DY, far less numerous than they once were), should understand it as well. If you think there should be another option, go right ahead and create one. If all you can do is throw out silly accusations like "they're playing God," you've offered nothing constructive.

  10. There are two answers to this comment.

    Most importantly, you can avoid the psychological damage that results from having a broken shidduch.

    1. Check Dor Yeshorim before ever meeting the prospective shidduch. In fact, this was the original intention of those who signed off on Dor Yesharim.

    2. While it is indeed a good and worthwhile idea for one to get tested before hand, the reality is that many of humans do have a tendency to run away from confronting difficult knowledge. If we aren't forced to know it, we prefer not to know it. Two thirds of those who enter the emergency room - for whatever reason - and have diabetes are unaware that they even have it.

    Therefore, if Dor Yesharim would tell people their results, many who currently test, wouldn't test! This way of secrecy prevents many more cases of genetic diseases.

  11. Exactly my point. Independent genetic testing is available for those who wish to pay for it.

  12. How about a dor yeshorim type arrangement / database for psychological issues (what RMF refers to as "machalat ner-vin".)

  13. I have spoken to both Reb Dovid shlita and Reb Reuven shlita. Reb Moshe's teshuva is allowing genetic testing. It in no way says you should do it. On the contrary, he said you should not do it but if you are scared you can do it. I know his grandchildren did not do it and only do it when the other side is demanding. Since it is, theoretically not assur. I find it interesting that the blog author quotes the teshuva when certain parts of the Feinstein family, including the recipient of the teshuva, Rabbi Tendler, shkita, have always said he does not understand the teshuvos of reb moshe. I think this proves it. Furthermore, reb moshe's sons have both told me that his signature on the dor yeshorim paper is not authentic and that he told his family not to genetically test. Even more, he would not allow the tests to be run in schools and only in cases of life and death. Dor yeshorim not tests for inconvenience diseases as well. You should also point out that an Ashkenazi genetic testing kit is usually covered by insurance and that Dor yeshorim is hundreds of dollars. With all that being said, dor yeshorim means well and wants to end genetic diseases. The founder of the organization feels he wants no one to suffer as he has. Bottom line, if you test it may not be assur but if you think G-d can't get you you are a kofer.

  14. @east sider - I think it would be appropriate for you to ask Reb Dovid and Reb Reuven to write a letter clarifying this teshuva and explaining Reb Moshe's true position. This teshuva is clearly misleading for most of us and in fact you should ask them to remove it from future editions of the Igros Moshe.

    It is reasonable to assume from your comments that Reb Moshe was also against seat belts, vaccinations, crossing only with a green light and the intersection - as well as getting job training or even a job.

    He obviously would also be against any form of preventative activities - such as warning children about the dangers of child abuse or taking drivers education to preven accidents. Courses to prepare for marriage as well as to understand financial responsibility should also be avoided.

    In fact I would assume from your assertions that Reb Moshe was also against medical treatment since the suffering from heat diease or cancer will happen anyway - though in a different form.

    In particular please have them include your point that escaping having a child with Tay Sachs doesn't stop the suffering associated with that and that all of those who have not had children with genetic diseases because of Dor Yeshorim - have in fact suffered the same anyway.

    In short your understanding of Divine Providence leads to some serious difficulties. If that in fact was Reb Moshe's view - it is important that that Reb Dovid and Reb Reuven establish that clearly - rather than simply accusing those of us who don't have such an understanding of being kofrim.

  15. Why would it be an issur? That pasuk speaks of consulting astrologers not medical drs or scientists.

  16. For Tay-Sachs, there is a very easy solution. Many local Jewish federations offer free Tay-Sachs screening tests. The solution for other issues is for them to be upfront with people as to what their test results are. Tell people what causes them to be incompatible, and they could then consult with a genetic counselor to receive advice as to what their course of action should be. Not too complicated, that is all.

  17. The reason why this is a problem is that many in the chassidish/chareidi community will not consider a shidduch with someone who has not done Dor Yesharim. This effectively creates a monopoly for their services. In an area where there is no competition, and no other real choice, it is crucial that the monopolistic business have credible oversight.

  18. What has it got to do with the Rabbis?
    I had a baby born with a genetic condition, which was fatal. I was then advised, in particular by Chabad, that I should not even have a scan to determine whether the same catastrophie would happen in my subsequent pregnancies. When I sat Shiva for my baby who was under a year old, all I was told by a United Synagogue Rabbi was that I could come out of my Shiva clothes and wear Shabbos clothes on Shabbos! I then plucked up enough courage to have another pregnancy and went against the Rabbis and had a genetic test. This baby unfortunately was affected by the same fatal condition, as in each and every pregnancy I had a 1 in 4 chance of the baby being affected by the same gene, as I and my husband were both carriers. The test could only be done at five months duration and having a termination was quite an ordeal. However, the ordeal for the baby and myself would have been far worse had the pregnancy gone to term. Fortunately doing it my way, I had two healthy children, who are now in their late twenties, which would not have been possible, if I had taken the Rabbis' advice. I welcome would comments on this!

  19. Tell people what causes them to be incompatible

    This is a service that they are not willing to offer. Each individual is entitled to seek other services. One can even set up an organization that provides such a service.

    However, the reality is that if people were to be told their results, many people who currently test would refrain from testing. Dor Yeshorim is not a social engineering organization. They are here to prevent individuals who are carriers of the same genetic diseases from marrying each other. They have determined - based upon their rabbinic advisers - that the most productive way of doing this is through not releasing anyone's personal information.

  20. Once people are declared incompatible by DY criteria, there's no reason they cannot do testing themselves to find out why if they are so inclined. At that point, they could consult with a genetic counselor for advice if they wish. It is indeed not complicated, as you say, so I'm not sure what the problem is.

  21. They won't consider a shidduch if there is a possibility of genetic incompatibility. If a person does his or her own testing, and can present the benign results, there's no reason not to do a shidduch.

  22. This effectively creates a monopoly for their services.

    It is only a monopoly as long as no one offers an alternative. However, you are suggesting alternative solutions - which effectively ends their monopoly. If people are not interested in other types of services, then Dor Yeshorim has no need to change what they do and alienate a significant portion of their customer base in order to satisfy some wannabe social engineers.

  23. The issue is that by the very step of taking the approach that they have taken, they have encouraged the adaptation of the mindset that there is something wrong with being a carrier, which is the very mindset that would scare of people from testing in a more transparent way. Dor Yesharim is now positioned as the only voice on this topic in the chareidi/chassidish community. I do think it is wrong of them not to use their platform to educate the public that a carrier of the genes for an illness is not one who has that illness. The problem is that if people were more educated about this, they would be more likely to use outside genetic testing other than the services of Dor Yesharim. It is to their financial advantage to perpetuate the system as they have set it up. In such a situation, I am calling for a more open discussion about the way they do things. Just saying "that is how they do things and tough luck" may be true, but if we want to figure out the best way that we as a community should address this issue going forward, it would be better if Dor Yesharim would be willing to be part of that conversation.

  24. You are not understanding my point. My point is that they have a self-selected list of diseases that they check for, and will not tell you which one it was that resulted in the "not compatible" label. Not all genetic illnesses are created equal. There are some which, some short years ago, had very negative prognoses, which now can be handled to a large degree with medication. The decision as to whether or not it is justified to break off a shidduch in such a case should be in the hands of the couple. As matters are currently structured, it is not.

  25. "It is only a monopoly as long as no one offers an alternative." Pardon me, but this seems to show a lack of understanding about what the issue is with monopolies. Obviously any monopoly would cease to be a monopoly if there was an alternative, but the reason why the government regulates monopolies so closely is because when there is one, the bar for entry for anyone new is often too high. Being that the masses now use Dor Yesharim, any competing organization would have a very hard time reaching the critical mass of clients needed in order to enable a shidduch matching service to be of any use. Therefore, everyone who wants any form of shidduch-related genetic testing is forced to use Dor Yesharim.
    You say it would alienate a significant portion of their client base. Why? If they presented two tracks, one where people request the giving of specific information, and one that follows the current system, why would any of their client base be alienated; they could just choose to carry on as they do now?

  26. A couple that has been ruled incompatible by DY can begin testing for any genetic illnesses they deem important to avoid, can't they? I don't see the problem. True, most people will not want to be bothered, but that's their decision.

    Alternatively, any person can avoid the DY system altogether and pay for his or her own genetic testing of whichever illnesses they deem important. The person can then present the benign results to a prospective partner.

  27. The purpose of DY is to provide pre-engagement testing to prevent unwanted infant deaths and the destructive influence it has on families. In fact they will not even test married couples. DY only tests diseases which need two carriers. Under the system there is no benefit in one knowing if he/she is a carrier since it is only relevant if both parties are carriers. Thus the stigma of being a carrier is never felt by clients unless both parties are a match. DY has increased the diseases they test for over the years. They also save specimens to allow for later/additional testing. BTW, they are much more sensitive than hipsaa rules require. If you call to ask about a test result they will not even permit you to leave your name.

    It is astounding to me that people can complain about an organization that has clearly helped the mall at nominal cost. As a community we really have issues.

  28. Consult machon puah. They are considered to be more considerate, will work with other rabbonim / posing, and i believe even provide counseling. Subject to logistics, location, etc.

  29. See new post

  30. I found out through a simple blood test that my children and
    then I myself are carriers of Tay Sachs. The gene came through my maternal line.
    I was able to pass this information on to my siblings and extended
    family and we are all of us so grateful for the information and to the Jewish
    institution and doctors who had the foresight and knowledge to do the genetic
    testing –which was done before the children were of marriageable age. You
    wouldn’t let your child cross a busy road without looking first! Having said that from what I have heard I
    would never let my child marry anyone in Austria either!

  31. I was wondering how does yeshorim became so mainstream if in 1980, a few years before Dy started there were approximately 6,000,000 Jews in the US and there were approximately 85 jewish cases of tay Sachs in the US and Canada that year. Less than 1/60,000. I understand it is a terrible disease but is this enough scientifically to require pre marital screening for all Jews?


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