This is the third part of a series on dating and marriage in the religious Zionist community in Israel. See more topics below.
Dor Yesharim Brochure
Dor Yesharim is an organization founded to prevent birth defects in the Orthodox community. I once heard Professor Ari Zivotovsky on the topic of genetic defects (any errors are my own). He explained that the religious Zionist or modern Orthodox community has the biggest problem with genetic testing. In the charedi community, shadchanim (professional matchmakers) are in control and don’t consider a match before getting genetic approval from Dor Yesharim. Secular Jewish couples, who find out after deciding to marry that they test positive for a genetic disease, usually prefer to undergo prenatal testing and a therapeutic abortion if necessary, rather than split up. But few Orthodox Jewish couples want to put themselves in a situation where they will have to decide whether to perform an elective abortion. And no one wants to break up a couple for that reason. See this post on therapeutic abortion in the community.
Leaders of the religious Zionist community have been strong advocates for testing by Dor Yesharim.
Dor Yesharim works like this: The organization approaches high school and yeshiva students, takes blood samples, and runs tests for a variety of genetic diseases. Some of the diseases, like Tay-Sachs, are fatal at a young age and some, like cystic fibrosis, are life-threatening but patients can live to adulthood or longer. All are much more common in Ashkenazi Jews, so those with a sephardi background may not require testing. Some health funds subsidize Dor Yesharim testing, because they provide the service for their patients at any rate.
Individuals do not receive the results of their tests. Instead, they get a personal number. When a suggestion is made, someone must call Dor Yesharim with both code numbers, and an answer is given within a few hours as to whether they are compatible or not. So unless the answer is no, the young couple don’t realize that one of them carries a particular gene. As far as I can tell from the literature, when candidates are told they are a match for one of the genes, they do not find out which disease they carry.
Why not just let individuals test themselves? After all, if they are old enough to get married surely they should be able to handle knowing their genetic status. It all comes down to a stigma. An unreasonable stigma, but that is the reality. Because if one group of people has to be careful about whom they date, and one that doesn’t need to worry, the first group could be at a disadvantage.
Not everyone agrees with the approach of Dor Yesharim. According to an article by Christine Rosen in The New Atlantis:
At first Dor Yeshorim tested only for Tay-Sachs disease, an always-fatal illness. But it soon added testing for a range of other conditions that are not always fatal, including conditions that are late-onset or that range in the severity of their expression—such as cystic fibrosis and Gaucher’s disease. Ten years ago, a spokesman for Dor Yeshorim told the New York Times that the organization would continue to add any and all genetic tests available to its menu of screening options. More recently, in a letter to a Jewish newspaper, Rabbi Ekstein noted that “the genetic panel has expanded beyond Tay-Sachs to include other genetic diseases that display similar inheritance patterns and are fatal or severely disabling.”
“This is what happens when you have people with no scientific orientation who want to do good,” says Rabbi Moshe Dovid Tendler, a professor of medical ethics at Yeshiva University. “The question arises, when do you stop? There are close to 90 genes you wouldn’t want to have. Will this lead to people showing each other computer print outs of their genetic conditions? We’ll never get married.”
Tendler is a trained microbiologist and teacher of Talmudic law. In recent years, he has come to public view for his outspoken defense of embryonic stem cell research and research cloning, and he is a great friend of medical progress. Tendler does not oppose genetic screening, but he has been an unrelenting critic of Dor Yeshorim’s approach, particularly its devotion to nondisclosure of each individual’s carrier status. “My grandparents were born in America. The American ethical and moral values are very important to me,” Tendler says. “The idea that Dor Yeshorim has genetic information and refuses to share it with the person who it belongs to is unfair, irrational, and almost anti-American. If you submit blood, you should be able to have the results.”
When couples in the religious Zionist community are introduced so casually and at such a young age, I am curious about when and how young people are testing for genetic diseases. Are they using Dor Yesharim or not? And who is making sure that no one falls through the cracks? Is testing a requirement before registering for marriage?
Please share your thoughts in the comments.
Earlier parts in the series:
VII: Paying the Shadchan, or Not
Other posts you may enjoy:
Navigating an Israeli Supermarket
The Day is Short and the Work Is Great: Efficient Winter Shabbat Preparation
I’m not in Israel, but we have the same issues here. I agree with Rabbi Tendler. Unfortunately, my daughter’s HS makes a big deal about Dor Yeshorim and encourages all the girls to participate. I imagine my feelings as a mother will be given short shrift, although whose money would pay for it, anyway?
Tesyaa, this is definitely an issue for all of us no matter where we live (if we are ashkenazi).
Yet another great post in this fascinating series!
My understanding is that many ulpanot and yeshivot tichoniyot have started to encourage their students to get tested at Dor Yesharim while they’re still in high school.
Thank you. Mrs. S., I think you’re right.
I’m not in the religious community so my take on this is going to be different, but I cannot fathom getting tested and not receiving the results. Knowing that someone out there knew for a fact whether my children would develop a horrific disease but wouldn’t tell me would eat me alive.
Robin, to be fair, the children only develop the disease if both parents have those recessive genes. Pretty much everyone has at least a few recessive genes for something or another, but most are exceedingly rare.
There’s also nothing to stop you from going and getting yourself tested at a regular lab and receiving the results. So no one is hiding anything from anyone, except by request.
By making it closed and socially acceptable, and by encouraging testing before dating starts, no one feels paranoid or obsessive about being tested, and no one is rejected for carrying a gene that won’t hurt their kids so long as they don’t marry another carrier.
It’s a pity people have to worry so much about social / dating stigma, but given that’s the reality, Dor Yesharim have done a great job.
Also, they really do test for only fatal and/or severly debilitating diseases.
Hi Sarah,
It’s voluntary, although the pressure is great to do it through DY in some circles. And because of the cost, doing it twice isn’t really feasible.
“Severely debilitating” is a subjective definition.
NO. If you want to go through a shadchan, then you need to have a DY number. HOWEVER, DY will not test you if you have already been tested elsewhere and know your status. So what do you do?
My husband and I got tested after we got engaged at the genetic testing station in J-m, near the shuk. It was more for information purposes. Thankfully, it worked out fine.
I agree with R. Tendler. I think it’s problematic to do mass testing and not reveal the results to those being tested.
Sarah – I have heard that Dor Yesharim tosses you out of their program if you get your own testing and learn the results.
Dor Yesharim is more suited for religious communities in which (1) there is a huge stigma associated with being even a carrier of a disease, and (2) interfamilial marriage is common. Neither of these applies in any community that I am part of, or would wish to be a part of.
Just to clarify, the link to your earlier post on abortion (which I very much appreciated) is not about “therapeutic” abortion, but selective abortion. There is quite a difference.
Dor Yesharim, while well-intentioned, has done more to maintain the stigma of recessive genetic carrier status than anyone else.
Outside of hareidi communities people should be offered testing in which they receive their results along with proper counseling. I also feel that while it can lead to painful situations down the road after a relationship has developed, trading genetic information prior to dating is going down a dark path toward the misuse of bio-information in our personal lives.
Thanks, MJ, I updated it. Glad you enjoyed the post and thanks for sharing your point of view.
I am part of the Modern Orthodox world, My brothers and I all were all tested through our medical insurance when we started dating and or it became an issue (my first husband was sephardi so not an issue). My insurance paid for it with the standard co-pay. I have a friend who was a Tay-saks carrier and she knew it and made sure not to date other carriers. My older kids are 1/2 sephardic and I am not a carrier so I probably won’t have them tested. Get tested and know the results!
NK, thank you for your comment.That is one approach that can work.
I have some insider info on Dor Yisharim – if a couple is deemed a bad match, the family can get the information on the genetic tests. They do not volunteer the info, but if the families insist they will give it to them.
on the other hand they have completely wiped out about 20 recessive genetic diseases in the haredi community and that is a wonderful accomplishment.
Despite what your source (Rabbi Tendler) says they do not test for Gaucher disease.
Ariela,
The brochure my son brought home does not mention Gaucher’s.
Do you mean they volunteer the info right away, or once a match is nixed?
Wiped out is too strong a word, as the diseases can appear in the next generation.
We deliberated whether DD would do the dor Yesharim test. We compared what out health fund gives to what they give and theis did not match at al.
In the end she decided to, as there are boys who check this out.
Even though as Sefardi (half), she did less tests.
the ones in the health fund depend on the place of origin of both husband and wife.
Rav borshtein of Machon Puah tells people to start with the Dor Yesharim and then do regular genetic testing after marriage.
If a genetic problem is found he suggests artificial insemination returning only embryos that were tested to be OK.
Not all the girls in my daughters class did this test
The idea of not giving the results seems to come from the haredi society.
Keren, you mean that DY does fewer tests? They do not test for dominant genes for disease. Is that what you mean?
Some of my kids did DY early (i.e. when it was not for a specific match) and one in principle didn’t.
For Tay-Sachs, it used to be (my experience is very old) that the husbands of pregnant women were tested. If they were carriers then the pregnant woman was tested.
One of my kids, who did do DY, was going with someone who had not yet done it. The other person did the test but they decided they didn’t want to wait the 3 weeks for the answer and got engaged anyway, saying if need be they would get genetic counselling. I think this points out the problem in our community. They would not want to ask DY first (even if they had both done the test already) before it got ‘serious’.
Risa, that is one of my questions that has not been answered yet. If children do test through DY, when are the numbers put through the computer? WHo makes sure that this happens, if the matchmakers are amateur and the parents aren’t that involved?
Tendler says. “The idea that Dor Yeshorim has genetic information and refuses to share it with the person who it belongs to is unfair, irrational, and almost anti-American. If you submit blood, you should be able to have the results.”
I agree. And anyone has the choice to submit their blood elsewhere and get the results themselves.
You’re right, Mark. The question is whether that is the best system for this society.
It sounds so simple to say that you want to know the results, but I know someone’s daughter that got her results and just because she found out she is a carrier of a disease, she really felt depressed. She felt like something was wrong with her, even though she didn’t “have” the disease. The question she kept asking was how she was going to bring it up with her date.
Should she say it on the first date? Probably not, because it would look to forward – and there may never be a “good” time to bring it up. She thought, maybe the odds are so low that she shouldn’t talk about it and take her chances. She said that if she finds the right guy, she doesn’t want to take a chance of losing him. Sounds to me like a possible tragedy waiting to happen.
That’s when I realized how great the Dor Yesharim program really was for me when I got married. Why would I even have to know if I am a carrier of a disease??? It is only a problem if I marry someone who is also a carrier of that same disease and my husband wasn’t. What would I have done with the information?? Again, why do I really NEED to know?
Dor Yesharim took care of it, and I got married knowing our kids would not have these terrible diseases.
This doesn’t take all your worries away when getting married, but it takes away a really big one. Thanks Dor Yesharm!
Mrs. N, thank you for sharing your experience. I also heard of a couple who had to break up over this issue, and he was traumatized by it.
We have Gaucher’s in my family. My uncle has it, and all of his siblings, including my father, are carriers. I was tested for the disease when I was 19 years old. I think it is important, especially if a parent is a carrier, for the children to be tested early. I wanted to know before I started a committed relationship with someone.
Hi BT, thanks for visiting and sharing your experience!
We haven’t started the dating process for our kids here in Israel so I can only tell you about our experiences in the MO community in the US. My husband did DY in high school and it was subsidized by the school. When we were almost sure we would get engaged I also did DY because it was cheaper since he did it already. Our insurances in the US weren’t going to cover them. I know many of my friends waited until they were almost engaged to do it. B”H it turned out OK for all of us. In hindsight I realize it wasn’t the smartest idea to test so close to engagement. Before dating makes it easier.
Keren: I simply cannot understand Rav borshtein’s idea of testing the emryos as a viable option for everyone. To do that you first need to do IVF and do a technique called PGD. The whole combo of IVF/PGD in the US would costs about $20-30K per trial, with no guarantees of a child and health insurances do not cover IVF. In Israel it would costs 20-30K shekel. Given that there is no infertility involved I don’t know if the kupot would cover it. And I’m talking just about the financial costs, not the emotional one.
When I was dating I was also very upset about not knowing and the ridiculous idea of sitgma attached to beign a carrier. Now I realized that most of my friends in that time were college graduates with science degrees and that’s why I thought the whole stigma idea is just ridiculous. Here in Israel I have many DT friends who went to mamlachti dati schools and passed all the bagruyot required by law. However, their ignorance when it comes to health/science matters is just so great that I wouldn’t trust them with the knowledge of beign a carrier either. (and the ignorance about halacha is also great, but that’s another topic).
Hannah, you are assumiong that just because you are DL and are smart/knowlegdeable then most people around you are the same. But the ignorance in the DL world is just the same as in the Charedi world.
Conclusion: I would like to see DY as the mainstream also in the dati leumi world also. If you are smart enough to seek the testing elsewhere, then you are smart enough to handle the results. But for the masses, DY is great.
Rachel, you have a good point and I am slowly coming around to that point of view.
My husband and i did itright before we wanted to be engaged. It was torturous and caused the first big fight of our not-yet engagment…the results take about 3 weeks to get and I was an absolute wreck waiting for them as i knew that our engagement might hinge on it…..as in..i would have probably said let’s get married anyways adn deal with it through genetic counseling…but my husband wasn’t so sure. Can you imagine how that wreaks havoc on the dating process…plus, when the other person says i won’t marry you at ALL costs…you start wondering if this is the right person for you. Determining compatability should not the LAST step in the checklist.
If one is goign to do it…much much much better to be tested in high school adn somehow determine compatabiliy before you get serious (i know the haredim do it BEFORE they go out….not sure when the modern orthodox should make the decision to do it!).
Leah, thank you for sharing. That is still the question we are left with–when is it done before dating at all and when right before the engagement? Or perhaps during pregnancy for some?
“This doesn’t take all your worries away when getting married, but it takes away a really big one. Thanks Dor Yesharm!”
Part of growing up is learning how to deal with difficult information, particularly about yourself and your body. The DY way is forced infantalization.
If you’re ready to get married and bring children in the world, you should be ready to confront difficult (and possibly upsetting) information. A million things can still go wrong with marriages and pregnancies. How are going to shield your daughter from those realities?
When the tests are done for dor yesharim, you give them the phone number you want to get results at. And the shadchann is NOT at that number. And you have to giver the numbers in. In our community (regular chareidi Israel), the parents call. And I never was even dependent on the other side, both sets of parents called and requested results. I urged all my kids to get tested before dating starts. That way, there is no agonizing 3 weeks, and one can even defer asking until a few dates have concluded successfully.(ie., not for every match, but before you get TOO involved.)
I think that the person who wrote that DY incurages “infantility ” is being rather infantile himself. Does he REALLY think that everyone in the national religios community is above prejudice about possible genetic conditions, that everyone realizes and is not concerned if only one person is a carrier? Judging from my work with parents of children with Down syndrome (including from the NR community), (which is NOT an inherited disease), there are still more than enough uneducated people around.
And even if someone here thinks that all of their chilren can “handle” any possible negative genetic information, I feel that DY should get HUGE credit for setting up a system that handles a difficult problem in a discreet way, and a way that WORKS. I personally know people whose marriage was shattered by the birth of a baby with CF, and a family who gave their baby with Tay-Sacs to foster care, as they couldn’t bear to watch a second child die.DY offers a way to prevent this. You may not agree, but please don’t bash it.
PS. When a shidduch is SUGGESTED I ask “did they test yet?” If not, I urge them to do so pront, in hopes to reduce waiting time.
While sephardim are at much l;ower risk, these diseases are making inroads to the sephardic community, and I would urge sephardim to get tested as well.
I find Rabbi Tendler’s attitude very interesting, considering that his father-in-law, Rav Moshe Feinstein was a strong backer of Dor Yesharim’s approach. (In fact, he actually stated that this was the only approach that believed was acceptable both because of the stigma and the belief that if young people were tested and told of positive results they would not handle it well at a sensitive time of life.) If their approach is unfair, irrational etc. then so was the FIL he claims to revere and defend.
Robin, you have just provided a perfect example of one of the reasons why Dor Yesharim takes the approach it does. The reality is that many people take the the tests and the results the wrong way, creating unnecessary problems and stresses.
For instance your statement that “Knowing that someone out there knew for a fact whether my children would develop a horrific disease but wouldn’t tell me would eat me alive” is based on a total misunderstanding of what the tests reveal. A carrier of any of these genes is NOT going to develop any disease. The only danger is if a PAIR of carriers gets married. And, even then, no one “knows for a fact” that the children, if any, will get a disease – with both parents as carriers, each pregnancy has a one in four chance of the child being born with the disease. This is a very, very different thing.
Abbi, while it’s true that “Part of growing up is learning how to deal with difficult information, particularly about yourself and your body.” It is also true that part of growing up is learning to know yourself well enough to know if you REALLY need that tidbit of information, and when to let sleeping dogs lie.
We didn’t do any genetic tests because my husband is Sephardi and I’m from the USSR. But if we were from the same genetic background, I think doing the Dor Yesharim thing is a good idea. Surely better than performing an abortion, which is horrible horrible HORRIBLE and, in my opinion, unacceptable no matter what, unless there’s a risk to the mother’s life. I’ve read your older post about abortions and I’m just appalled that some rabbis think a baby with Down’s syndrome should be disposed of. Have they ever MET anyone with Down’s syndrome? Who are they to decide whose life is worthwhile?
I am a BT who decided to get tested. I called Dor Yesharim, found out about their policy, couldn’t understand it, asked to speak with a manager who could explain it, they did, and I said thank you very much and went to the genetic testing clinic at a major hospital here in New York. More diseases tested for, more professional interface. DY seems to do a great service, and has the results to prove it, but I for one cannot fathom not receiving the results of such a test. Each to his own.
Rachel, maybe what I said was not clear, I said that Rav Borshtein said that it is known that DY do not test for everything, only for a number of the most common genes in Ashkenazi society
Therefore, once a couple is married, they do the tests recomended by genetic counselling in their health fund.
If a problem is found (i.e. both parents are carriers of something), then they suggested in vitro.
MIL: DY do less tests for people coming from Eidot Mizrah background.
i.e. their main set of tests is for ahskenazim.
In addition, as I said, we compared their set of tests to the basic minimum in our health fund package and they did not have the same list at all (maybe only 2 were in both sets).
For the person who asked, if the young couple who are meeting did DY, they are the ones who ask each other to check the mutual compatibility of the resuls. As someone said, if this is not done near the beginning, is becomes complex
Rickismom:
First of all,I’m a woman. Second of all, what is infantile about asking people who are ready to get married to take responsibility for their own genetic information?
I’m sorry, but I think either you’re upset and not thinking clearly or you don’t really know what the word infantile means. Babies and children close their eyes to pretend something isn’t there. Adults don’t (or shouldn’t).
I made no comments about the national religious community or the charedi community. I think anyone, no matter what their community, should know the results of their own genetic tests. It’s just called being a grown-up. I didn’t say they have to broadcast this information with their entire shul and neighborhood, so what does stigma have to do with anything? And if they’re so upset about the news, then a meeting or two with a genetic counselor to explain how genetics works should clear up much of the depression, since, in reality, as long as they don’t marry another carrier, they’re children will be fine.
Again, how would a prospective Kallah or chatan who has a hard time dealing with possibly negative news of genetic tests deal with other really bad news down the road? I believe children (especially those who are supposed to be old enough to get married and have children on their own, but it’s sounding to me like that’s not always the case with kids getting married today) only learn when they deal with reality. Hiding reality “to let sleeping dogs lie” doesn’t help them learn in the long run.
I haven’t read the rest of the comments but I wanted to respond to what you said about mine – to be fair, the issue doesn’t change regarding the rarity, not knowing itself is a HUGE thing to carry around. I KNOW – it happened to me. My husband IS a carrier of one of these terrible diseases, and a first degree relative of mine was as well – there was a very high chance that I was too and that therefore our potential children would be at very serious risk. Waiting for the results of that genetic testing was horrific and the relief when I found out that I was NOT a carrier was tremendous, I can’t imagine having that maybe hanging over my head for the rest of my life when it is so easily and simply avoidable.
@ Kayza Zajac – I understand EXACTLY what it means, having done the tests myself only after finding out that my husband was a carrier. As someone with 40 years of life experience and a masters degree from a top school, I’m quite capable of understanding the various ramifications – I don’t feel I need you, DY or anyone else to stand in my stead and determine what I am or am not capable of handling. Perhaps we’d all be better off if we give people credit for being responsible adults able to make their OWN decisions, instead of assuming that they are incapable or unwilling to rise to whatever occasion life has in store for them.
ditto to ABBI et al. i think DY’s way of operating is ridiculous. it is patronizing, regressive, condascending and unethical.
but at the least it did something. this is one area where the RW is light years ahead of MO (unless things have changed since i got married). not one of my friends did *any* type of genetic testing before marriage. i personally happened to be tested for tay sachs, but that was more by chance and had nothing to do with preparation for marriage. its not that we all decided not to do it. we simply didn’t know about it.
personally i think this is an issue that should be discussed by hatan/kallah teachers. i want my money back.
i wrote something about this a while back:
http://agmk.blogspot.com/2008/05/genetic-testing-for-jewish-couples.html
“personally i think this is an issue that should be discussed by hatan/kallah teachers”
and in any type of ????? ????? classes in high school as well.
that should read hilchot ishut classes
I had offerred my kids the opportunity to be tested by DY when they started dating, but so far, the two that have reached dating age were really insulted by the non-disclosure policy.
When my daughter got engaged, they had tests done before they announced anything, but at Maccabee labs, which cost more, but offer full disclosure.
What I don’t understand is why someone would put the DECISION for who they marry in some organization’s hands? What ever happened to love, commitment and weathering storms together? What ever happened to faith in the future?
So- question. What if someone carries a translocation 21 (resulting in Down syndrome in the infant)? Ds is not a terrible condition to me, or most people who have the joy of a child with Ds in their family, yet I BET that is on the list of “no” conditions for an organization like this.
When it was limited to Tay Sachs I might have approved, in theory. It was a well intentioned idea but like all good ideas it grows into a monster. We fall into the trap of thinking that our EGO and that WESTERN MEDICINE, with its LIMITED UNDERSTANDING of HEALTH can ultimately control less than desirable outcomes. That with good planning, we can CONTROL our lives, our futures, everything.
Where did G-d go in all this mess? And Emunah? And
CF, in my opinion is NOT a deal breaker! I want to see couples be able to make their own informed health decisions. In this scheme, couples lose the right to choose what conditions (IF they present themselves) which they would be content to live with.
Other conditions like Gluten intolerance are already known and identifiable via genetic testing.
There is a “Violence” gene that scientists are studying.
And recent studies have shown some genetic differences in some people with autism – I think it’s the MECCP2 gene or something similar.
And where does it end? This is Eugenics plain and simple, and doesn’t sit well with me at ALL.
And if genetic stability is of such a great concern I want to see public discussions by community leaders welcoming Ge’eirim as shidduchim.
Speaking as a Convert, of course, who after Beis Din dated three long years – at age 30. Finally found a wonderful BT 16 years my senior to marry- at an Orthodox singles Shabbaton in the U.S.
You would not believe the open bias and crass comments against converts in even “liberal” circles even though we bring a lot of interesting energy and light to Judaism- not to mention a WONDERFUL Heinz 57 blend of genetic diversity to the Tribe.
I am English, Irish, Dutch, French and Native American (Chickasaw, 1/16th) and my mother’s and father’s families were in America since Wayyy back.
Liora
I’ve blogged about my family’s own experience with Tay-Sachs testing:
http://jrkmommy-personalandpolitical.blogspot.com/2011/01/approach-to-genetic-disorders.html
I’m not in Israel. I can tell you that in Canada, there were mass screenings for Tay Sachs starting in the early 1970s. I know that it was offered to high school students in Montreal, that my parents found out about mass screenings in Toronto through a B’nai Brith lodge, and that my family doctor and OB both spoke to me about genetic testing (covered under government health care). As a result of these programs, there was a massive decrease in incidence of the actual diseases.
I grew up hearing about these diseases and the testing, knew my parents were carriers, and simply assumed that I was likely a carrier as well. It was a matter-of-fact discussion, with no stigma at all. I appreciate that DY offers a practical solution for those communities in which the risk of stigma may lead people to avoid testing, since I believe that the stakes are so high with lives at stake, but I truly believe that the preferred approach should be mass testing of students before they are old enough for shidduch or dating, along with decent education. It’s not that difficult to teach someone what a recessive gene is.
Thanks for your comment and for sharing that link!
Can someone explain the thinking behind testing when you are pregnant? Surely by then it is too late?
I guess this gives Geirim a whole new lovely status in the frum world! 😉
but, my kids should still have the testing, right? (my husband is ashkenaz).
In case anyone is interested, here is the list of conditions that Dor Yeshorim tests for: Tay-Sachs DiseaseCystic FibrosisCanavan Disease Familial Dysautonomia Fanconi Anemia Type C Bloom’s Syndrome Gaucher Disease Type IMucolipidosis Type IV Glycogen Storage Disorder Type INiemann-Pick Disease
You can get more information on their website.
Regarding DS, there is a small number of cases of DS caused by an inheritable gene. This is a subset of Down Syndrome called translocation. It is a tiny fraction of the total number of cases of DS in the world, and DY does not test for it.As a mother of a child with DS I have mixed feelings about genetic testing and its effect on society and upon our attitudes toward parenting and disability. I don\’t have any easy answers. I met a family who had multiple children with Tay Sachs and it\’s devastating. I also know a family with a genetic history of dysautonomia. I can see a value in preventing these diseases from occurring. But I am wary of this brave new world. DY testing also requires that young people only meet through the formal shadchan process, and I\’m not sure that\’s so good for our community either.
Liora, testing for Down syndrome is NOT included in DY, because it is not caused by a recessive gene, but by normal genes getting pulled the wrong way (usually in the formation of the egg.)
(PS of course I know what “infantile” means to the cpommenter who questioned that. I AM educated.)
As the mother of a child with Down syndrome, I can testify that all communities (whether Dati Leumi, chareidi, or chiloni) are prejudiced against people with disabilities, and MANY are misinformed. Even though DS is not a diease “inhedrited” from the parents, you occaisionally find people who will not marry into a family (including siblings) with such a child. (I always say “if they are such idiots, WE don’t want THEM!”). If such is true with Down syndrome, a non- inherited condition, imagine how much prejudice and bdis-information exists with inherited conditions! Dor Yesarim prevents this stigma which can hurt several family members, yet insures that these conditions will not occur. (And Liora, these conditions are MUCH harder to deal with then Down syndrome, Life with a special needs child is definately worthwhile, but is no picnic (at times). If everyone would be tested in ADVANCE, submitting the code numbers when the shidduch is getting serious (but BEFORE commitment), (and getting an answer within 24 hours), much heartbreak is saved.
LOVE? It is still there. But here the couple still has the option to think if they want to go ahead knowing what their genetic chances are. SEVERE disabilities (like Tay Sachs, CF) can be very stressfull on a marriage, to put it mildly.