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I don't know anything about the cost but the purpose is to find out if the Jewish parents is a carrier for Tay-Sachs Disease. My OBGYN told me the same thing (my FI is Jewish). Can anyone who has done the testing chime in?
I am not Jewish, but I believe they are done because the Jewish popluation is at an increase risk for Tay-Sachs and cystic fibrosis. I would ask your doctor if you need to have them done since you only have one Jewish parent.
Most insurance companies don't pay for these unless there is a strong family history of the diseases. That is why they cost so much.
Edit:And it is just a simple blood test I believe.
My sister had that done before she had kids. I don't remember the cost. As to whether it's necessary, I think it's dependent on the ethnic background of you and your FI. I think it's Ashkenazi Jews who tend to carry the gene. I'm definitely planning on getting tested. My FI and I are both Jewish, and I want to avoid any possibility of conceiving a baby who has Tay-Sachs. If you both have the gene, then they can do pre-implantation genetic testing on the embryo to see if it has TS.
Here's a website with some more info: http://www.mazornet.com/genetics/tay-sachs.htm
I thought that the testing would be on the fetus after it has been conceived? I mean, I assume you could also test the potential parents but even if a parent is a carrier, it's only a 50% chance that the child could get it (at least for Tay-Sachs). I don't have experience with this since I'm not Jewish, but my boyfriend is (Sephardic, not Ashkenazi), all my knowledge comes from learning about genetics in college.
No they don't test the fetus! There would be no point in that. They test the Jewish parent or parents so that you know the risk/odds before you try to conceive.
Well, they can test embroys. If you and your FI both have the gene, they can test embryos and then if the embryo has Tay Sachs (has both recessive genes from the mom and the dad), you can choose to not have it implanted (obviously this means that you wouldn't be getting pregnant the old fashioned way, but would be doing it in a lab). I'm sure people have different views on that, but if my FI and I both have the TS gene, then I am for sure testing the embryos before they're implanted.
OK now I'm confused because that link Hilsy posted says that you only need testing if both parents are at risk for being carriers. I'm not jewish, french-canadian, or creole, so then why the ef did my OBGYN tell me that FI should be tested?
Hmm, @kittyachi: I'm not sure why he would NEED to be tested if there's no way you would have the gene, because then it would be impossible for your kids to have TS. Maybe she just wants him to get tested so he knows one way or the other whether he's a carrier?
You can test the parents for the risks of conceiving a baby with TS, or you can do fetal testing early in pregnancy to find out your risks of that particular fetus carrying TS. I really know nothing about genetic testing of the parents, but the fetal testing is offered to everyone in early pregnancy, typically covered by insurance companies, and is pretty cheap.
Jewish populations are at higher risk of Tay-Sachs, but not higher cysitc fibrosis (correction to above). That said, having the test done will give you piece of mind if he's not a carrier, but may just stress you out more if you find out that he is.
I'm not a doc, but a biology major. Here's my take:
Tay sachs is called an autosomal recessive disease, which means that both parents have to contribute a gene for it, so if both parents carry then the odds of having an affected child are 1 in 4. Because you (I'm assuming by the post) are not Jewish, the odds are incredibly low of you carrying a gene. If only one parent is a carrier then you cannot have an affected child, but have a 50% chance of having children that are carriers. So, since you almost undoubtedly are not a carrier, and the odds of your husband being a carrier are about 4% (http://www.genome.gov/10001220) I wouldn't worry about it.
If you were also Jewish it might be worth having tests done.
I hope this gives you some peace of mind.
Maybe my doc suggested it because if FI is a carrier, while the baby wouldn't have T-S, it could be a carrier? I don't know. Doesn't seem worth it to me in that case.
I think it's weird that insurance would cover the fetal testing once the baby is already conceived and potentially has the disease and not cover testing of potential parents for screening purposes. That is completely backwards IMO. I guess I just generally don't understand fetal or embryonic testing for it if you can do testing before conception, but that is a different issue I think.
My husband and I are both Ashkenazi. I got tested for Tay Sachs and Cystic Fibrosis, but not any of the other diseases for which Ashkenazi Jews are at increased risk. It was just a blood test and my insurance covered it.
Here's a list of the diseases you can be screened for:
Tay-Sachs disease, Canavan disease, familial dysautonomia, Niemann-Pick (type A) disease, Fanconi anemia (group C), Bloom syndrome, Gaucher disease (the non-neuronopathic type), mucolipidosis type IV, and glycogen storage disease type 1. These are all uncommon conditions that are predominantly found in persons of Ashkenazi ancestry. [Tay-Sachs disease is also found in persons of French-Canadian (Acadian) ancestry and, rarely, in mixed Jewish/non Jewish couples.] Although not strictly a disorder of European Jews, cystic fibrosis is often included in an Ashkenazi heritage screening panel, since it occurs with the same frequency in European Jews as in members of the non-Jewish Caucasian population (approximately 1/3,000).
my rabbi told us that i should be tested because my husband and i are both ashkenazi jews. my doctor said that insurance wouldn't cover it until i'm pregnant (which i think is very silly), but it wouldn't stop us from ttc anyway because just b/c you're a carrier doesn't mean your child will automatically have the disease.
I did it at the NYU medical center in nyc and my insurance covered it completely. Also tons of discounts for students if you research it.
my husband is the one who was tested in our case as he is Jewish. It was AFTER conception and the insurance covered all bu the copay! I recommend it, frankly. better safer than not, kwim? and yes just a blood screen.
Tay-Sachs is of concern if both parents are of Ashkenazi (Eeastern European, Jewish) lineage. For example, my BF is of Sephardi lineage and my father converted and is of Swedish lineage. As a result, there is no need for us to get tested.
Double check with your insurance company because mine covered it completely and I'm not pregnant yet! It's a simple blood test. It's true that if one of you DOES NOT have the gene then your kids can't have it, but they can still be carriers, so it's better to know if there is a risk or not. Tay Sachs is the big one, especially for Jews, but my doc tested for a whole slew of them that affect all populations.
soon these tests may be widely available at wallgreens! I dont know how deep they go into the genetic code but there was a cool article in the NYT about it recently! If i find it I will post it.
Just to chime in...I think I've heard that some Rabbis require the genetic testing. Have any of you run across this?
My insurance covered this completely too, and in fact my ob/gyn simply told me she was ordering it as a matter of course. The only weird thing was that cystic fibrosis testing is included only if you're already pregnant (which I'm not), but they called and asked if it was okay to run that test too. (Sure, why on earth wouldn't you, once you have the sample?!) Personally I'd much rather have all of this run beforehand to avoid having to make a difficult decision afterwards. For our insurance, they will only test FI if I'm a carrier, since these are all recessive.
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Years ago my OB-GYN mentioned that if I plan to become pregnant there was genetic testing I needed to do since I have one jewish parent. I didn't think much about it.
Today I read on fb that a former classmate who is pregnant had the testing done and it cost thousands of dollars.
What?!? Can anyone tell me more about this? Is is necessary? How much does it usually cost?