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Ooooh, I need ice for that burn…
Except that people get tested for things besides those targeted by Dor Yeshorim. And sometimes, they actually want to know the results. The problem is that in the frum world, the world that has this (imaginary) stigma in the first place, swears by Dor Yeshorim. If dating purely outside of the shidduch system, if the person you’re dating will ALWAYS be willing to be tested by another service, you’re right. But “your Dor Yeshorim number” has turned into such a basic part of shidduchim (at least the ones with which I’m familiar) that even if you want to find it out for yourself, you need to do Dor Yeshorim as well if only for shidduchim.
Personally, I’m not sure I would want to be genetically tested so that I’d know the results- it’s a slippery slope, and it’s something I’d have to think about. But if I did, if only for the purposes of shidduchim, I WOULD be tested twice- because baruch Hashem there are people who do worry about potential genetic diseases in their children but they don’t want to be tested twice. For them, Dor Yeshorim may be enough- and practically speaking, they’re probably right. If I were to be tested privately for anything from breast cancer to Tay Sachs to blue-eyedness, I’d have to do it again and do it myself.
Yes, people do test themselves for other things- someone very close to me has had several relatives who passed away of breast cancer so she got herself tested for the BRCA genes. Knowing that she has one of them is changing the way she thinks about her health. Even if Dor Yeshorim tested for BRCA1/2, they wouldn’t tell you which one you have, which is worthless.
Dor Yeshorim, in a practical sense, really doesn’t prevent anyone from being tested by another organization, especially as it’s done in many high schools. It just shoehorns pretty much anyone who wants to conduct shidduchim through the mainstream channels into being part of the system. What I don’t understand is why I couldn’t theoretically be tested by an outside lab, which could give me my results and for more genes than Dor Yeshorim tests, and then submit my results to the Dor Yeshorim lab to have them compared to the guy’s. The same confidentiality is preserved. But either way, whether or not you want to be retested by another organization, you essentially have to be tested by Dor Yeshorim. That’s the only way I’d call it a monopoly- not a great term, admittedly, but the only one I can think of. A niche market may be better.
Where am I going wrong, O mighty Popa?
However, people who are considering getting tested by someone besides dor yeshorim are not doing so with the intention to ever be retested by dor yeshorim
They’re certainly hoping not to have to, but what do they expect to happen if they test positive, other than Dor Yesharim?
and are highly unlikely to know of this policy
I assume that they tell everyone.
It is simply ridiculous to assume they are trying to target people whose intention was to be tested twice!!
I guess that depends what the purpose if the policy is.
Moreover, in your scenario the solution would have to be for the other person to be re-tested by an outside tester–which is a net loss of business to dor yeshorim
Not if it forces everyone to test through Dor Yesharim to begin with.
And this probably happens frequently, since people in the college world are generally tested by other organizations.
That us an interesting point. What happens when a Dor Yesharim tested individual wants to try a shidduch with an independent testee? IDK
I changed my mind, you can go to a fake seminary after all.
I already do.
Self-correction- about BRCA1/2, they wouldn’t tell you if you have it at all. What’s the point of that?
DY: By fake seminary, I think he meant Michlalah…
Also, part of the point of Dor Yeshorim is that it’s an internal system in that you give your number, the other person gives his/hers, and they already have the blood samples so that they can quickly compare and check the genes. That’s why both sides HAVE to be tested by Dor Yeshorim.
writersoul:
If I understand correctly, your concern is that you will want to be tested for breast cancer and figure you may as well also be tested for tay sachs once you’re having a blood test?
1. Does it really work like that, that you can tack on tay sachs to breast cancer for a few more dollars? Is there really any relevance between being tested for one and the other? Or is it more like “I might want to go to Key Food and figure I may as well get tested for tay sachs once I’m leaving the house”.
2. Why do you want to be tested for tay sachs? Do you think that being a carrier makes a difference in your life somehow? Just who are you making fun of for making a stigma now?
3. Look, they want to have a system where people don’t know their own and other’s status, so that a stigma cannot be started. It makes sense that to protect that system they need to make sure people cannot use them to figure it out, which would happen if people were tested by someone else and then by them. I don’t find that unreasonable, and I don’t know why you don’t think that is the most simple explanation.
DY: I have no idea what you are talking about. I’ve never seen anyone posting on facebook warning people not to be tested for tay sachs because then dor yeshorim won’t let them be tested again.
PBA: Have you heard about 23andme? It was a company that uses a body sample (I believe saliva and not blood, which would explain its popularity) and it tests ancestry and gives raw genetic data. It used to give health related information until the FDA shut that down very recently, because people would look up their illness related genes just stam, which they didn’t feel was necessary.
People didn’t need to know what genes they had, or whether they had genes for specific diseases. There were options to test for a whole gamut of disease-related genes, even potential Alzheimer’s-related genes, just because people are interested. One reason it was shut down was that people found they had genes for, Idunno, heart attacks, things they couldn’t really do anything about, and they were panicking to their doctors. All for nothing, because what should they do besides what they’d be doing anyway?
In this day an age, people simply like to know things. Perhaps now that 23andme, which I believe is the only non-doctor-related system that did health-related tests, has been closed down, there will be less of a frenzy now that people will probably be more likely to base it off of a doctor’s recommendation. However, you certainly still can get genetically tested like this, and the same resources that allow Dor Yeshorim to test for Tay Sachs can allow the scientist checking for BRCA1 to test for Tay Sachs as well.
So,
1) Yes, they can. I’m sure you know that genes are just ATCG and there isn’t an essential difference between the gene predicting Tay Sachs and the gene predicting breast cancer besides for order, methylation, which chromosome, etc. The same effort it takes you to test for mutations in the BRCA1 gene as for mutations in the HEXA gene (Tay Sachs). Very different from going to Key Foods.
2) I don’t particularly currently want to get tested for Tay Sachs. Many do. Before 23andme closed their health testing division, my dad wanted to get tested by 23andme. He has no particular reason, he just wants to know about his genetics. I think it’s a slippery slope, but it’s definitely a legitimate viewpoint. Whether you think it’s stupid or not, people DO think that way and people DO get tested on their own. That’s the issue at stake here- that people do do it on their own, not whether they should.
And for the record, if I did want to know, it would be out of (intellectual? or am I fooling myself) curiosity, not out of stigma. I don’t know where you got the idea that would be why. I don’t think it’s a stigma to have a recessive gene, as I’ve said a number of times.
3) Of course that’s the explanation, and that’s why I acknowledged that this isn’t a monopoly so much as a niche. Their model makes perfect sense insofar as it goes. I honestly don’t have a real tayna with them as an organization. I just don’t see why they care if I figure out my own genes. It’s not so much that they don’t give me my results (that’s not their job) but that they care if I find out another way.
Basically, I know that while Dor Yeshorim exists there will never be a perfect answer. All I’m trying to say is that there is a reason why people might conceivably want to be tested twice. If it was accepted in my personal circles to test at somewhere besides Dor Yeshorim, where they give results, I would do that instead without a second thought, but while this system is in place, I will do it twice if I so decide.
As far as stigma is concerned, I don’t even think that a stigma could start from knowing the results of Dor Yeshorim testing, because the likelihood of an Ashkenazi Jew NOT having a recessive gene for SOME Jewish genetic disease is incredibly remote. That’s the POINT of Ashkenazi Jewish genetic diseases- that they’re COMMON in Ashkenazi Jews because of inbreeding. In fact, the people with the most of them (or who are most likely to have them) are probably the ones with the best yichus (as they’d keep marrying into other families with comparable yichus, which are probably related to each other- as in chasidishe rebbes’ families), so the ones with the fewest mutations for genetic diseases would have the stigma, and they’ve already got one :). I accept if people don’t want (others to) know, but I still don’t think it makes sense.
And for the record, I’m sorry if I’m sounding so harsh, but I’m not intending to “make fun” of people who think there’s a stigma. I disagree (quite strongly) and I explain why but I’m not trying to make fun.
DY: By fake seminary, I think he meant Michlalah…
Yes, I know; that was an attempt at humor. Also, welcome to the idiots’ club, joining me, and Dash’s cynical side.
Popa, what’s Facebook? Anyhow, maybe one of the HS or sem girls here (or yeshiva bochurim, ch”v) can verify my assumption that Dor Yesharim doesn’t let you independently test. Do they make you sign something?
They care if you find out your own status is because then if you date yosef and you give in your DY numbers and are positive, then yosef will be able to know that he is positive for the same thing you are positive for. And DY does not want people to be able to use their program to figure that out.
I asked why you wanted to know if you have tay sachs gene to make a point. The only reason to want to know is if it matters in some way to you. Since it obviously does, it should not be surprising to you if there would be a stigma.
And genetic testing is not as simple as you think. It isn’t a matter of simply putting it in a machine and it spits out all the genes. Finding the tay sachs mutation involves looking specifically for that mutation.
As it is, if she finds out that she’s a mismatch with Yosef, she knows he’s a carrier. The only difference is that she doesn’t know which specific condition he’s a carrier for. Do you think that this distinction is so important?
FTR, I don’t think the policy is for nefarious reasons as Dash’s cynical side does, but I definitely agree with Dash and writersoul that the effect is a monopoly. That’s not necessarily a terrible thing either, because at the end of the day, we have a relatively economical and efficient way of avoiding mismatches.
If I find out my genetic predispositions, rest assured that I won’t be telling anybody. Besides, due to the way in which Dor Yeshorim works, I’ll have no idea of which gene mutation Yosef has. Neither will he- I certainly won’t be telling him which one I have so that he can compare. Neither of us will ever know based on our Dor Yeshorim results solely. I will know my personal, privately discovered results, which means that I may or may not infer from this his results (depending on how many genetic mutations I have- if I have more than one, how do I know which he has?). If this were Dor Yeshorim’s fear, that some random girl will know some what genetic mutation some random guy- who she won’t even be dating- has, then they’d make it a lot harder for you to find out your genetic profile after the fact. Perhaps that’s impossible and this is the best they can do- I don’t know. I’m not saying that I don’t get why they do it- I’m just saying that it’s annoying. Call it my personal bratty vent, if it makes you happy.
How on earth can you know the “only reason” why I’d want to know a particular piece of information? As someone very interested in genetics, medicine, genealogy, history, etc., personally, one of my biggest and most impossible desires is to create a genetic family tree. Just to be able to follow all the different patterns of genes, dominant, recessive, homozygous, heterozygous, X-linked, mitochondrial, codominant… I’ve done this on a smaller scale in biology and genetics classes, but this would be huge. It’s impossible without an INCREDIBLE amount of time (-travel) and effort, but it’s something that I’d absolutely love to do. If you can’t relate to that, then you can have NO idea what my “only reason” for wanting to do something is. Everyone has their own reasons and interests. What do you think it would do for me if I found out I had a Tay Sachs gene? For me, it would be the same thing as having a Dor Yeshorim test, just more personalized. I think that’s fascinating- if you disagree, that’s fine. If you thought I’d be completely flipping out, you’re wrong. I’m not sure what you think, exactly. I’m really confused about the point you’re trying to make. The stigma would seem to me (correct me if I’m wrong) that having an Ashkenazi Jewish genetic disease mutation, even if it’s recessive, would be seen as a “flaw”- at least, that’s the reason I’ve been given as far as the reason why Dor Yeshorim was created in the first place. My point is that it is not, as I’ve explained. Zehu. If it’s not a flaw, I fail to see the stigma.
That said, I’m not sure I would find out if it weren’t for the whole marriage part of it. If that weren’t a worry, I’d probably skip it, the same way I’m skipping finding out whether I have the gene for, say, albinism, as that’s a lot more common in other populations. I’d find out about these particular genes because they’re truly important for me to know- however, truthfully, I probably will go through Dor Yeshorim and not investigate further. It will depend on my mood at any given point, but right now I think I’ll skip.
While it’s obviously not mindless, once you know what you’re looking for (and for these mutations, they obviously do), genetic testing is really not necessarily that complex. Some, in fact, are downright simple (comparatively, at least), such as those for which you can use restriction endonucleases and gel electrophoresis, in which case you don’t have to sequence the DNA at all. (I did this myself in a lab for AP Bio.) While you do need to find the right restriction endonucleases, once you have, it’s practically a rote process. For those that need sequencing, once you know what gene you’re looking for, it’s a lot easier than it seems. What’s really difficult is figuring out in the first place what genetic mutation causes a particular result- that can take years or even decades. Once that’s known, however, finding it again is a lot simpler than that.
Upon reflection, I just want to clarify that when I say that I wouldn’t tell anyone about my genetic mutations, it’s not because I’d be ashamed of it at all (unless it’s something personally compromising- there is obviously such a thing as genetic discrimination in jobs and insurance, but a recessive Tay Sachs gene won’t affect that). It’s just that honestly, who else would care?
Oh, also, what DY said.
Man, you guys are going to make me fat with all the popcorn I’m going through…
No, you are misplacing what is the cause of the monopoly.
The monopoly is the result of them not telling you their results. Therefore, there can only be one organization because otherwise you could only know when you dated someone who happened to use the same organization.
And why in the world would you not think it significant the difference between knowing you are positive for 1 of 8 as opposed to knowing which one? how?
writersoul: there’s no way I can read all that. How about just say that the reason they don’t let you get tested if you are already tested is that they want to secure their system of people not knowing if they are carriers.
And then we can all go to sleep.
Yeah, and I totally don’t believe you that you think there is nothing bad about being a carrier–you’ve basically said 20 times that you do.
Popa, when I wrote that, I actually thought they test for about four things, but the fact that they actually test for ten things (I found a list online –
“For interested participants, a simple blood test screens potential carriers for 10 disorders:
Tay-Sachs Disease
Cystic Fibrosis
Canavan Disease
Familial Dysautonomia
Fanconi Anemia Type C
Gaucher Disease Type I
Mucolipidosis Type IV
Glycogen Storage Disorder Type I
Niemann-Pick Disease”
only slightly minimizes my point. IF (and I don’t know if I agree with the notion) being a carrier of a specific condition is a stigma, it would still be a stigma to be a carrier of an unknown dreadful condition.
Ok but they agree with me, and that’s why they have the policy. Not for your conspiracy theory or to weed out the aliens sho are working for the NSA or any other conspiracy theory.
What is your big beef with these people that you’d rather ascribe their actions to condpiracy theories than to the much more starightforward normal theories?
You sound like me when I’m talking about NASI
I don’t think it’s a conspiracy theory, I believe they mean well and have accomplished a lot. I am just pointing out that they have in effect created a monopoly with their policies. Also, I still fail to understand the “normal” theory.
Same as I’ve done with NASI, I have never told anyone who to marry (except for my wife), I’ve just insisted that mathematically, they’re correct.
Look, if you’re going to not read what I wrote- and you obviously don’t need to, this is a random online forum- then don’t abuse me for stuff I didn’t say. We disagree. Fine. You have with a lot of people.
I honestly don’t see the difference between knowing you’re the carrier for A genetic disease and knowing which one. I’d tell you to just call me an idiot, but you already have.
Being a carrier- except in the case of very few diseases, none of which (to the best of my knowledge) are Ashkenazi Jewish genetic diseases- DOES NOT MEAN ANYTHING unless you marry someone who is a carrier of the same gene. Then, there’s about a 25% chance that each child may have the genetic disease. THAT’S IT. Still important, but just for the kids, not the parents.
And I’ve said about 50 times that it doesn’t matter, not that it does. Please tell me where I indicated that it’s a big deal to have a recessive mutation- I should know so I can be clearer in general. To sum up- having a recessive mutation is (in most cases) technically harmless. I, personally, along with many others, might possibly like to know WHICH I have, just for curiosity’s sake.
Look, you don’t have to believe me. You’re a random guy on the internet, I’m a random shnook.
By the way, if any sciencey people happen to read my stuff (and I admit, it’s really, really long- I’m sorry for that, but even if I had the time to write a shorter version I don’t know that I could) and tell me where I’m wrong, please do. If I’m making mistakes, I like to know.
Basically, I’m repeating myself a lot.
Shavua tov.
A bit feisty today, are we? (good for you)
And for the record, being called an idiot by popa is nothing to be ashamed of. If I may say so myself, you’re in good company.
But you aren’t picking on a policy which has anything to do with the effective monopoly!! There is one policy–that they don’t give out results and don’t want their service used to figure out results. You’re making up that the reason for that is so that writersoul won’t add on tay sachs to her 23andMe test–when the obvious reason is to protect their system of not figuring out results.
I’m sorry, it is obvious.
writersoul: You aren’t an idiot for not understanding a difference between knowing which gene you carry or knowing it is one of 10–you are an idiot for thinking that because you don’t understand that, that therefore they have some nefarious cockamanie scheme. (And I didn’t call you an idiot, you did.)
If they allowed you to also independently test, one could choose to do so, and if negative on all ten, never need to use DY (I assume that there’s a way to show certified results to the other party). The fact that they don’t allow you to test with them if you’ve done so makes it not worthwhile, because you’d need DY as a fallback in case one or more tests is positive.
Okay, I picked a word out of my head. The word that seemed most applicable and apropos based on my impressions from reading your replies. Sorry.
So explain me the difference. Until then we will not be on the same page, and this is going/continuing to go in circles.
I NEVER SAID THEY HAVE A SCHEME. Nefarious, cockamamie, or otherwise. You are putting words in my mouth. Monopoly =/= scheme, and I even admitted that monopoly wasn’t the word and that niche market was better. They are doing a great thing in the Jewish community, promoting testing for people who would never have done so otherwise and nearly eliminating Tay Sachs in the Jewish community. I just have my personal taynos with it that are really not so relevant. That’s really all. Really. (Really really really really really. Semantic satiation is so cool.)
DY: I can live with a lot of steam in my head without it affecting me, but once it reaches the red line, kaboom. And that wasn’t even a kaboom, trust me.
Yes, I’m taking issue with the notion that they don’t allow retesting in order to keep their “niche”, when in fact that is also necessary to keep their system of not giving out results, and that explains it much simpler.
It’s DY’s fault.
I’m the one who made the diyyuk that PBA considers me and WS idiots.
DY is merely saying that although their intention is pretty obvious, as PBA is arguing, they have a side benefit of, in some instances, garnering the “business” for themselves.
DY, having said that, when you mix into an argument in order to bring up a parenthetical, tangential point, you deserve all misdirected critisism.
Okay, I see the mixup.
Dor Yeshorim has cornered a niche market. They perform a specific service very well and are the only ones to do so.
If a competing service opened up doing exactly the same thing, let’s call it Shprintzy’s COMPLETELY Non-Yentaish Genetic Testing Service, and thereafter Dor Yeshorim said that you could not be tested by their service if you were going to have Shprintzy doing so as well, then the whole monopoly shpiel would be true.
HOWEVER: the fact that the word monopoly was brought into this in the first place is unfortunate, because it’s obfuscated the point. The fact is that Dor Yeshorim hasn’t got any competitors, meaning that for better or for worse, this is all on their terms. That’s really it. I’m not saying it’s a pernicious monopoly, I’m honestly not. Their reason makes sense even if I disagree. Until Shprintzy opens up a new service, that’s the way it will continue to be. Dor Yeshorim has their logic for doing what they do, and that’s fine.
This isn’t even tangent^2 anymore- it’s tangent x 10^23.
It’s been real, though.
shkoyach writer, you can go a real seminary again
Too late, too late…
*facepalm*
1) It was Dash’s cynical side who first used the term monopoly.
2) Who cares if the term is inaccurate. The point isn’t that Shprintzy can’t compete, the point is that you can’t go to Quest or Lab Corp and test for these ten conditions.
Again, maybe this is for the better, and I think their intention is noble, but at least admit that it’s true.
Isn’t it tangent^10×23? (I just added another one but it gets rounded down.)
DY: You can theoretically go to Quest or LabCorp and test for these ten conditions if you have a doctor’s say-so. You can’t use these results, however, for Dor Yeshorim- you have to do it separately.
Dor Yeshorim, however, is entirely unique when compared to Quest and LabCorp. It does a completely different service. There is no monopoly when there is simply no competing service.
Okay, I apologize to Dash’s cynical side for calling it an obfuscator.
HaLeiVi: Sorry, dumb hemi-demi-semireference to Avogadro’s number, which I’m not sure why I know but I thought was cool. (I think it may have come up in chemistry somehow…)
WS, I was under the impression that you can’t take the Dor Yesharim test unless you haven’t taken, and promise not to take, your own lab test.
Bump
I wrote my number on the check and lost the card. I retook the test a year or so later then found my original number. all’s well that ends well.
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