A reader on a previous posting asked for a posting on Dor Yeshorim, the Committee for Prevention of Genetic Diseases. She is not happy with this Committee. She may not be happy with this posting either.
First, some information. Dor Yeshorim began in the 1980s. This was not, however, when the first information on genetic testing for Tay Sachs disease (and other "ethnic" genetic diseases) first came to light. Already in 1972 the Young Israel of Flatbush offered for the first time a testing day for Jews of Eastern European descent to come and find out if they were a carrier for Tay Sachs disease. My husband and I already knew a family that had two Tay Sachs children and what devastation that could bring. I was expecting a child and I was understandably nervous. I went and had the test done. The results were given to me directly and I took them to my doctor. He explained that any children I would have would not get Tay Sachs but that unless my husband were also tested and found to be negative, they could be carriers of the gene. I was thus only partially out of the woods as regards Tay Sachs; instead of worrying about myself and my children, I could worry about my children's future children.
There were rabbanim at the time who were against the Tay Sachs testing, particularly of already married people. Their worry was that couples who were both Tay Sachs carriers (necessary for the disease to manifest itself) would have in utero testing during a pregnancy and would resort to therapeutic abortions should the developing fetus be found to have Tay Sachs. There were also charges leveled that the whole testing program resembled a type of eugenics. Many rabbanim ossured having the test. And many people went and had the test anyway.
Dor Yeshorim's approach was different from the one in the 70s. They advocated testing people before they got married. In this way two carriers would not be considered a good match for marriage, given the 1 in 4 chance of having a child with Tay Sachs. They were not looking to get rid of the gene entirely (which would have gone into the area of eugenics), but only to see to it that two carriers were not matched up. They established a procedure for testing each year in the Jewish schools.
Because their intention is not to eradicate the gene, they do not tell the testees what their results are. When they receive the identifying pin numbers for two people they answer only suitable or not suitable. Not suitable means that both people carry the gene; suitable does not say whether both people are without the gene, or if one carries the gene, which person it is. Those who receive a "non suitable" will know that they carry the gene. Even if they marry to someone who is suitable, the gene will carry forward with their children.
In addition to Tay Sachs, the program now also tests for
Glycogen storage disease (type 1)
Fanconi anemia (type C)
Mucolipidosis (type IV)
Gaucher's disease (only by request)
These genetic diseases all require that both parents be carriers of the gene for the disease. Dor Yeshorim does not test for genetic diseases that require only one parent to be a carrier, whether mother or father.
The only way to eliminate the diseases mentioned entirely would be to say that all those who are carriers of the gene for that disease should not have children, so the gene could not be passed on. Now you really are getting into eugenics. I do not know what percentage of Klal actually carries the gene, but given that a large number of rabbanim are in favor of the testing, and given that the incidence of Tay Sachs has gone down considerably, I would imagine that a large percentage of the Ashkenaz Eastern European descent Jews carry the gene. Are we seriously suggesting that a huge swathe of Klal refrain from having children so as to eradicate a gene that, if carried by only one parent, does no actual harm to a child? And there is this: if only one person were to be overlooked in the testing procedure, the gene would be on its way again to pass among the members of Klal. Not to mention that mutation could bring it back. Now multiply this times the number of diseases that are actually being carried genetically.
Should parents know the results for their children or should the process be kept "secret" the way it is now. There are a number of points to be made in favor of keeping the process as we have it now. The first one has to do with human nature--if parents were the keepers of the information and a shidduch was redt for their child, what safeguards are there against the parents' lying about the results? There are plenty of people who believe that 1 in 4 are "safe" enough odds to take a chance on a shidduch that they want (you have only to look at people who wager on keno and roulette to see that people don't believe the odds even when they know them.) There are people who might simply make a mistake in reading the results they are given for the multiplicity of tests now being given. There are parents who might forego the tests for their children altogether and make up a result. There are parents who, finding out that a proposed shidduch is not a suitable one, might make that knowledge public. There are those parents whose understanding of what is being tested for and why may be very rudimentary and could result in comments being made about others that are full of innuendo. It is possible that parents, knowing that their child is not a carrier, would insist on a shidduch based on the other party's also not being a carrier, and there we are in eugenics again. There are certainly other possibilities I haven't presented.
It makes sense to me that testing our children while they are in high school is a good method. The problem is for those who are not now in one of the Jewish high schools. Frankly, parents should be insisting that any person that is presented for a shidduch who has not yet had the tests needs to go and get them. I do not see any stigma attached to the testing because the results are kept quiet until information is needed. Dor Yeshorim is a neutral third party without any interest in any individual shidduch.
Until such time as science gives us another better method of dealing with the heartbreak that can arise when two carriers of a genetic disease marry and have children, Dor Yeshorim gets my vote. Until a better method can be devised, Dor Yeshorim is just fine. I, for one, do not want to go back to the "dark ages" when having children was a crap shoot and burying a two-year-old was far too common.
If someone has a better way, let them come forth and present their method for public discussion.
I agree that for now Dor Yeshorim is the best mthod we have for preventing the genetic diseases you listed from appearing. Until gene replacement for individuals is a common reality then we really don't have much of a choice. I also agree that eugenics is not a halachic choice.
Still curious though why only Ashkenazi Jews of Eastern European lineage get some of these diseases. Was there some kind of mutation somewhere in Eastern Europe that spread? Did no Ashkenazim intermarry with Sefardim at any point? Doesn't seem likely when the Sefardim settled in parts of Europe after the expulsion from Spain.
Good point Allen. Why is this only a Ashkenaz problem. I know plenty of mixed marriages between sefardim and ashkenazim so you would think that the problem was not just for one group. Maybe it's different today then back when they first found the genetic link? Maybe less sefardim and ashkenazim inter married? Also have to agree with the posting that until we find a better way Dor Yeshorim is working.
My maternal grandfather's family was of Sephardic decent living in Eastern Europe, from the times of the inquisition. But aside from davening Sephard I would categorize the family as Eastern European.
In other words, the test results have to be kept secret to protect us from ourselves. I'm not sure that I can argue with that (although I personally used another testing service through my local Hillel that told me the results).
A good reason to stick with Dor Yeshorim is that it bypasses using your medical insurance to pay for the testing. Because the insurance company sees what kinds of tests you are taking when you put in for payment for a lab test it could be that they might turn you down for medical insurance based on the results. Lots of discussion out there on just this problem. Dor Yeshorim is looking to avoid the problem by not recommending shidduchim where both parties are a carrier. Insurance companies just see what they want to see. They play the odds too usually not in our favor.
i have a problem with dor yeshorim because i don't think people should be denied access to personal information about themselves, especially medical information. however, i think dor yeshorim is probably best suited for the the community it serves. furthermore, anyone who wants the information that dor yeshrim denies them is free to go to their doctor and get it.
my thoughts on jewish couples and genetic testing at
"A good reason to stick with Dor Yeshorim is that it bypasses using your medical insurance to pay for the testing. Because the insurance company sees what kinds of tests you are taking when you put in for payment for a lab test it could be that they might turn you down for medical insurance based on the results."
bypassing your insurance company is not a good reason for dor yeshorim to exist. you can simply tell your doctor not to bill the insurance company for the testing. (besides, i'm not sure if a doctor is actually required to release the results of a lab test to the insurance company unless those results are necessary to file a claim for future treatment stemming from the results of the original lab test. but i could be wrong here.)
as far as your concern about insurance companies knowing your genome, that is inevitable. in pharmacy for example, pharmacogenomics is an emerging field. eventually, when you go to the pharmacy, certain medications will be dosed to suit your particular genetic makeup. obviously this assumes that health care workers will know you genome.
Lion, I can't speak for all doctors but mine doesn't do the testing. You have to go to a lab to get the tests done. The lab bills the insurance company directly and the code they put in identifies the specific test being done. I think what the posting is alluding to is that the simple fact that you are being tested for something, never mind the results, can have an insurance company think twice about insuring you or maybe raising your rates. If you are getting tested for Tay Sachs there must be a reason--you don't take a test just for the hell of it. It raises a red flag with the insurers. They are looking for reasons to eliminate what they see as high risk people to save their bottom line. May not be legal but they find all kinds of ways to get around that.
Even if you take the tests somewhere else so you know what the results are you still have ot have the doctor or lab send the results into Dor Yeshorim and get a number because otherwise how will you be able to access the information for anyone else or they about you? The whole purpose for them is to prevent two people from getting married who have the carrier genes. That won't work if both sides don't check or have the information in one place.
I sometimes try to make shidduchim for people. I don't really want to know that kind of medical information about people I am setting up. Better to have a place like Dor Yeshorim.
Parents who believe they are entitled to know their children's medical histories may or may not be correct. According to HIPAA, such medical information is only available to parents of minors, which can be construed as 16-18 years of age depending on the situation. After that minimum age you can only get the information with written authorization from the patient. This is whether you tested at a doctor's office or if you tested at Dor Yeshorim. Since children are tested by Dor Yeshorim as seniors in high school or older for the boys, parents would not have access to information for most of those tested anyway. When Dor Yeshorim uses the pin numbers and does not disclose any actual information they are not violating HIPAA. Parents involved in shidduchim for their children with other people do not fall in the category of people considered by HIPAA as a need to know group for medical information, certainly medical information about someone not related to them.
Maybe what people need to see to make them more comfortable with the whole idea of being tested for something genetic is some real statistics on the Jewish genetic diseases. From when the testing began in an organized fashion with Dor Yeshorim, how many cases of Tay Sachs have there been as compared to before testing began? Maybe if they see the numbers that say the testing is doing good in preventing marriages that mean that less Tay Sachs kids are born they would be more in favor of the testing.
Dor Yesharim is probably the best solution the klal has going at this point. But a person can dream that someday we will move beyond stigmas and deception and understand the science behind it all.
I ended up learning my carrier status when I was pregnant with my first. My insurance covered the cost, although initially the doctor had me pay the costs thinking it might not be covered. I have to say I was a little mad to think I was paying for the same blood test twice. Perhaps Dor Yesharim could release the results with proof of marriage?
I had my insurance run the test many many years ago.
And for those who were worried, the The Genetic Information Nondiscrimination Act is now law, banning discrimination by health insurance and employers on the basis of information from genetic testing.
"Maybe what people need to see to make them more comfortable with the whole idea of being tested for something genetic is some real statistics on the Jewish genetic diseases . . ."
such a study might prove worthy, but it would have to have a very limited demographic inclusion criteria. most people don't use dor yeshorim, so you have to be careful and limit the study in order for proper extrapolation.
in any case, a lot of people believe want they want to and no amount of studies will prove to them otherwise.
what would probably be more effective than a statistical study would be genetic disease awareness week every year. shul rabbis would devote their drasha to it, schools would have special programs, etc. and in certain communities what would work better than all of the above is a daas torah statement that no/shidduch marriage is to be conducted without genetic testing.
according to dave above your fears are unwaramted. but even if you are still afraid, you can also pay the lab out of pocket and not have them file a claim with your insurance company. also, i'm surprised your doctor wouldn't do it. isn't it just a matter of drawing the blood and sending it ou, just like he would do for mundabe blood work that is not analyzed in-house?
HIPPA does not mean parents/others can't see medical information. it just means they have to be authorized to be able to do so. (the same way you authorize a doctor to send medical information to a school?)
Slow down your reading Lion, I said that parents can get the information if their child authorizes it once they are above minor age.
My doctors don't draw anything but for a regular blood test. Any special tests you have to go to a lab for, even if it is just plain a blood drawing to get the test. My insurance doesn't even pay for blood drawn in the doctor's office, only a lab and only the labs they have contracts with.
Glad to know there is a law to protect genetic information but would you really trust insurance companies to follow that law exactly?
"Slow down your reading"
"My doctors don't draw anything but for a regular blood test . . ."
i guess it depends on the insurance. and it also means that i don't have as much to complain about my own insurance as i thought. i even have my son's pediatrician do my own blood work when necessary
"Glad to know there is a law to protect genetic information but would you really trust insurance companies to follow that law exactly?"
well yes, if i were the one with the perfect genome and it meant lower rates for me.
right now it doesn't matter for me either way, as my health insurance is through my wife's employer and i don't think the insurance can bar anyone from participating (or can they?). of course all this can change.
the truth is right now the insurance companies have access to so much of our personal medical information that they could already play games if they really wanted to (or do they?). the genome will only make it easier for them. i don't know anything about how the law works, but i hope it does address the valid concerns you raise. the day is not far off when your health care providers will have your genome.
Lion: Dor Yeshorim does not deny people their own personal information. Any individual is welcome to have his or her genes tested privately at a lab. DY simply offers a very specific service to interested parties.
Jewtoo: I do not have any statistical information at my fingertips, though I'm sure it is out there somewhere. You might be able to get information about this from Chai Lifeline, because they provide services to many people with the conditions in question. For now, here is one fact, through the lens of my own interpretation: I have seen many more non-orthodox children with Jewish genetic diseases than Orthodox Jews. I think the birth rate in each category should be approximately the same, because while there are more non-religious Jews in all, the Orthodox tend to have more children per family. I believe that it is highly possible that the reason for this is because of Dor Yeshorim, because frum people have started avoiding potentially catastrophic marriages whereas unaffiliated Jews may not even be aware of these diseases at all until it strikes them personally.
Excellent point Basmelech. The frum Jews are vastly outnumbered by the non frum Jews here in the US. If only the frum Jews are testing for the genetic diseases then the genetic diseases will continue to strike people. And with the high rate of intermarriage the problem is going to be spreading to the general population too.
I think the point made about having a genetic awareness week is a good one but it won't happen because frum Jews are not going to want to advertise that Jews have diseases that aren't in the general population. Enough ammunition out there already for the antisemites.
Rae, I think you are right. Jews are really sensitive already about what people think of us and they'll give up something that could be worthwhile just so others won't have what to talk about us.
It should have been obvious but until I saw the comment I didn't even think that any statistics about Tay Sachs, unless they were limited only to the frum, would have no meaning if the non frum Jews don't get tested and still get the disease. Do the reform and conservative movements not talk about this at all? What wouold be their reason for not having a program to test? I mean it's not a frum disease it's a Jewish one.
"I have seen many more non-orthodox children with Jewish genetic diseases than Orthodox Jews."
in what capacity have you seen this?
"I believe that it is highly possible that the reason for this is because of Dor Yeshorim"
they claim to have wiped out tay sachs in brooklyn. there is a very moving interview with the founder in New Scientist: http://proquest.umi.com.cwplib.proxy.liu.edu/pqdweb?index=46&did=566569661&SrchMode=3&sid=1&Fmt=3&VInst=PROD&VType=PQD&RQT=309&VName=PQD&TS=1211836669&clientId=18091&aid=1
"if the non frum Jews don't get tested and still get the disease."
why would you think that non-frum jews don't get tested? dor yeshorim is not all that's out there. (although i don't know what the relative screening rates are between ortho and non-ortho)
"If only the frum Jews are testing for the genetic diseases . . ."
see my comment to steven
". . . then the genetic diseases will continue to strike people. And with the high rate of intermarriage the problem is going to be spreading to the general population too."
a) it already is in the general population. tay-sachs is called a "jewish disease," but it is not exclusively so. non-jews can carry it, and iirc it is also prevalent among certain french groups (cajuns and in quebec)
2) intermarriage would actually help minimize the expression of the disease rather than spread it. the reason we have this problem to begin is our historically high rate of endogamy (and often on an extremely restricted localized and intra-familial level). (note: this was NOT an endorsement in any way of intermarriage)
Re "intermarriage would actually help minimize the expression of the disease rather than spread it." Only until there were a sufficient number of carriers in a general geographic area. Ten sets of Jewish parents, one of whom is a carrier, would produce at least 30-50 children, and who would all be carriers. Ten intermarried couples with the Jewish partner as a carrier would produce the same 30-50 children who are also carriers. It doesn't take long or too many generations for the spread to take place. At that point the problem gets aggravated.
"frum Jews are not going to want to advertise that Jews have diseases that aren't in the general population.
a) some of these diseases are already widely identified in medical and lay literature as jewish diseases. (akin to how everyone knows that sickle cell anemia is a black disease.) moreover, jewish organizations are already very public about encouraging screening. if the anti-semites haven't picked up on it yet, they're not interested. (as a historical side-note, at the turn of the century, a main argument of
jewish apologists and philo-semites
on behalf of jewish immigrants was that they were free of certain diseases when compared to the general public.)
b) tay sacs is not really a jewish disease per se.
"Enough ammunition out there already for the antisemites."
Wow were you right Lion, and thank you for some information I didn't know before. According to the sources I looked at "At one time Tay-Sachs was known mostly to babies of eastern and central European Jewish origin. Currently, Tay-Sachs affects mainly the non-Jewish population. To date there are between 75-95 known mutations that are responsible for Tay-Sachs. There are known French Canadian, Cajun,Old Order Amish and Irish mutations, among others. These days most Tay-Sachs babies are born to couples not thought to be at risk."
"Most doctors assume that unless you have a Jewish background there is no need to be tested. These statistics speak for themselves:
1 in every 50 IRISH AMERICANS IS A CARRIER OF TAY-SACHS
1 in every 27 FRENCH-CANADIANS IS A CARRIER OF TAY-SACHS
1 in every 27 CAJUNS IS A CARRIER OF TAY-SACHS
1 in 250 OF THE GENERAL POPULATION IS A CARRIER!
The scary part is the number of HEXA gene mutations that can cause the disease. And that's just the ones we know about and have identified already.
Thank you for the heads up.
In response to your comment, my observations on this topic come from experience working with Jewish (including non-orthodox) children who have special needs.
Although there are activists who work to promote awareness of these diseases in the general public, I don't think it results in large-scale genetic testing like the frum community does. Mostly what they seem to accomplish is raising money for treatment research -- also an important cause, because these diseases will probably never be eliminated entirely (at least because of the mutation factor).
The Dysautonomia Foundation is the main advocate for FD. At least two of the kids on the front page are definitely Jewish, don't know about the others but it is a VERY predominantly Jewish condition.
See here, too.
Just dropping some links for people who want to know more!
This sure lends some credence to that idea that genetics is destiny. You can eat right, live a healthy lifestyle, exercise and still be at risk for lots and lots of things. Imagine how bad things could be if you don't live a healthy lifestyle. And if you don't educate yourself and take what precautions you can.
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