Downs Syndrome and the Plain Ppl - Mothering Forums

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#1 of 34 Old 12-27-2008, 09:13 AM - Thread Starter
 
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The other day, I was talking to an NP who told me that he thought the Amish/Menno populations have a much higher incidence of Downs Syndrome than the English. I have never heard/seen this notion, tho of course I'm aware that the Plain ppl do have a higher incidence of certain genetic issues springing from marriage with close relatives over the generations (recessive trait stuff). And I suppose that considering Plain families are more likely that English to have large families, you would see more incidence of DS just because you see more babies generally. But not necessarily a higher % of DS as the general pop. in a given # of total pregnancies.

Anyone know about this? I will be seeking info at the websites of the 2 clinics I know of that are specially devoted to the genetic disorders of the Plain--but if there are other sources of info on this topic out there, I'd like to hear about them.

thanks!
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#2 of 34 Old 12-27-2008, 09:43 AM
 
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It's actually Down syndrome- no s.
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#3 of 34 Old 12-27-2008, 10:40 AM - Thread Starter
 
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ooops

quite right, thanks
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#4 of 34 Old 12-27-2008, 11:34 AM
 
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In America, 80% (I have even seen estimates as high as 90%) of babies with Down Syndrome are aborted after the parents find out through genetic testing. My guess is that because Amish woman are less inclined to have genetic testing/are less likely to abort, there is a higher percentage of babies with DS in their population than in an English population.

Just a guess though

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#5 of 34 Old 12-27-2008, 01:23 PM
 
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Originally Posted by channelofpeace View Post
In America, 80% (I have even seen estimates as high as 90%) of babies with Down Syndrome are aborted after the parents find out through genetic testing. My guess is that because Amish woman are less inclined to have genetic testing/are less likely to abort, there is a higher percentage of babies with DS in their population than in an English population.

Just a guess though
That's what I was going to say. Plain people don't do genetic testing and don't do abortions either. Both of these lead to increased genetic disorders that are generally not found as often in the general population due to increased genetic testing.

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#6 of 34 Old 12-27-2008, 01:27 PM
 
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The communities that I'm most familiar with also don't practice birth control as the women get into their 40s and sometimes 50s. Amongst the English, I think it is more common to map out some kind shorter, acceptable window for childrearing, planning kids from the ages of say, 25-40 and then using birth control through menopause. Down Syndrome becomes more common as women age.

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#7 of 34 Old 12-27-2008, 01:56 PM
 
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Originally Posted by channelofpeace View Post
In America, 80% (I have even seen estimates as high as 90%) of babies with Down Syndrome are aborted after the parents find out through genetic testing. My guess is that because Amish woman are less inclined to have genetic testing/are less likely to abort, there is a higher percentage of babies with DS in their population than in an English population.

Just a guess though
ITA! I am a mennonite woman. We don't have a higher INCIDENCE of Down's pregnancies, just live births!

I know a non-mennonite mother with a child with down's and she was the one who first told me that (she said) upwards of 90% are aborted. And as genetic testing is not an exact science, not all those babies could possibly have down's as there are certainly mothers who have been told that their child had a genetic challege for certain and they turned out to be 100% fine.
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#8 of 34 Old 12-27-2008, 01:58 PM
 
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That's what I was going to say. Plain people don't do genetic testing and don't do abortions either. Both of these lead to increased genetic disorders that are generally not found as often in the general population due to increased genetic testing.
I would say they are certainly FOUND in the general population, just not accepted for live birth. Kwim? It is misleading to say that they are not found in the non-anabaptist population, because they certainly are.
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#9 of 34 Old 12-27-2008, 02:16 PM
 
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I would also think it would be a combination of having children later in childbearing years and not doing abortions. Not just from some higher incidence of genetic defects.
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#10 of 34 Old 12-27-2008, 07:16 PM - Thread Starter
 
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Thanks everyone--

this all makes good sense--both the fact that more of the 'English' are having testing and terminations than the Plain, and that more of the Plain folks are having babies up into their 40s and even 50s.

Anyone else have anything to add to these 2 theories?
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#11 of 34 Old 12-27-2008, 10:07 PM
 
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My understanding (a cousin has a son w/Down Syndrome) is that SOME forms of Down's are inheritable, while MOST are not (randomly occur throughout the population, in this case with increase of incidence w/maternal age.)

Logically, a randomly occuring genetic mutation will NOT occur more frequently in any particular population than in any other particular population. Although given the larger culture's attitude towards this particular genetic mutation, there might well be more live babies born with Down's in a particular population such as the Plain people who do NOT do genetic testing or abort and DO have more babies past 35 than most of the rest of the culture.

I have no idea what ethnic/cultural populations (if any) are most likely to carry the inheritable form of Down's. I would suspect that there is research somewhere, but I don't know where to find it. It is possible the Plain people would be one such population, but I bet the person the OP talked to was referring more to the cultural practices & their results.

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#12 of 34 Old 12-28-2008, 10:36 AM - Thread Starter
 
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Well now I can see I have some homework to do. Never heard that DS could be inherited--only that is a trisomy manifestation of 'random occurence'. But I have not yet given this any in depth study.

Mamabeakley, do you suppose you might ask your cousin about DS links they may have found along the way?

thanks again
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#13 of 34 Old 12-28-2008, 10:54 AM
 
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Originally Posted by channelofpeace View Post
In America, 80% (I have even seen estimates as high as 90%) of babies with Down Syndrome are aborted after the parents find out through genetic testing. My guess is that because Amish woman are less inclined to have genetic testing/are less likely to abort, there is a higher percentage of babies with DS in their population than in an English population.

Just a guess though
Some areas have a lower percentage of abortions however....like here in the "bible belt" although many of the genetic tests are preformed, "only" (for lack of a better word) about 30% are aborted.

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#14 of 34 Old 12-28-2008, 02:17 PM
 
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Actually, wikipedia has a pretty good basic explanation of it: basically, there are several ways the duplication of all or part of the 21st chromosome can happen. See http://en.wikipedia.org/wiki/Down_syndrome

It doesn't say anything about incidence of Robertsonian translocations (the "familial" form of Down Syndrome) in different populations, though.

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#15 of 34 Old 12-28-2008, 02:23 PM
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Originally Posted by channelofpeace View Post
In America, 80% (I have even seen estimates as high as 90%) of babies with Down Syndrome are aborted after the parents find out through genetic testing. My guess is that because Amish woman are less inclined to have genetic testing/are less likely to abort, there is a higher percentage of babies with DS in their population than in an English population.

Just a guess though
How about comparing them to the Spanish popluation as they do not abort.
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#16 of 34 Old 12-28-2008, 04:12 PM
 
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Like Latin Americans? Because I would say that in modern day Spain there are certainly abortions. Ru-486 is capable of crossing borders and the countries in Europe are very close together.
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#17 of 34 Old 12-28-2008, 11:20 PM
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Like Latin Americans? Because I would say that in modern day Spain there are certainly abortions. Ru-486 is capable of crossing borders and the countries in Europe are very close together.

Sure Latin America is fine. How about Mexico?
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#18 of 34 Old 12-29-2008, 09:56 PM
 
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Originally Posted by channelofpeace View Post
In America, 80% (I have even seen estimates as high as 90%) of babies with Down Syndrome are aborted after the parents find out through genetic testing.
One study shows a rate of 92% of women having abortions after a prenatal Dx of Down Syndrome. This was nearly 10 years ago, however.

I'd like to find out some more demographics about which populations have more live births of Down Syndrome babies. Still researching . . .

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#19 of 34 Old 12-29-2008, 10:01 PM
 
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How about comparing them to the Spanish popluation as they do not abort.
It would be a sensible hypothesis that live births of Down Syndrome babies would occur more frequently in cultures that overall do not believe in abortion. But I just found this study indicating that German women are the least likely of the sampled European women to have abortions after a confirmed Trisomy 21 Dx. Portuguese women are the most likely. I would think that with Portugal's historically Catholic influence and tight regulations on abortion, it would be the other way around. :

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#20 of 34 Old 12-30-2008, 02:39 AM
 
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whether such differences result in health professionals presenting termination of pregnancy in a way that is not concordant with patients' value systems.
I love this quote from the abstract. Doesn't it sound like the provider could find some NEW way of presenting it that would make the termination option more appealing to parents with value systems? Why would they WANT parents to terminate?
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#21 of 34 Old 12-30-2008, 02:43 AM
 
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Could you compare them to the Mormon population?
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I love this quote from the abstract. Doesn't it sound like the provider could find some NEW way of presenting it that would make the termination option more appealing to parents with value systems? Why would they WANT parents to terminate?
Yikes. What a quote.
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#23 of 34 Old 12-30-2008, 03:08 PM
 
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I was referencing the rhetoric of the actual paper. The paper's goal seemed to be to enable doctors to make abortion for genetic 'defects' more palatable for parents of any and all value systems and to match the convinvincing speech to the value system. But my question is WHY would they have ANY stake in whether or not you carry a pregnancy deemed defective to term??? Insurance issues? Just a believe that more invasion equals always better? Clearly this paper seems to come from the perspective that Trisomy parents SHOULD abort and maybe that is why 80+% do, kwim?
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#24 of 34 Old 12-30-2008, 03:11 PM
 
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I could be VERY pro-choice and still be against medical system endorsed/encouraged eugenics.
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#25 of 34 Old 12-30-2008, 04:02 PM
 
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The paper appeared to attempt to study how a provider could craft their presenation style to SKIRT a parent's potentially conflicting value system, and achieve MORE terminations. That is what I am questioning. The paper didn't specify which value system the provider would be trying to skirt (so neither did I), but it did imply that it would be a conflicting one, and that the provider's job would be to reconcile any conflicts so that the parents would be freed up to authorize this medical procedure. :?
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#26 of 34 Old 12-30-2008, 05:07 PM
 
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Originally Posted by MsBlack View Post
The other day, I was talking to an NP who told me that he thought the Amish/Menno populations have a much higher incidence of Downs Syndrome than the English. I have never heard/seen this notion, tho of course I'm aware that the Plain ppl do have a higher incidence of certain genetic issues springing from marriage with close relatives over the generations (recessive trait stuff). And I suppose that considering Plain families are more likely that English to have large families, you would see more incidence of DS just because you see more babies generally. But not necessarily a higher % of DS as the general pop. in a given # of total pregnancies.

Anyone know about this? I will be seeking info at the websites of the 2 clinics I know of that are specially devoted to the genetic disorders of the Plain--but if there are other sources of info on this topic out there, I'd like to hear about them.

thanks!
I would say ask at the clinics- part of why the clinics exist is to study what happens in a "closed" population - I have read online several things about particular disorders but haven't found info about Down's and the Amish specifically-
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#27 of 34 Old 12-30-2008, 07:13 PM - Thread Starter
 
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Thanks, mwherbs--for the suggestion.

And others, please, let's stick to the topic at hand--once again, do you have any info/links regarding Down Syndrome and it's comparative incidence among the Plain vs the 'English'?
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#28 of 34 Old 01-01-2009, 11:17 AM
 
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Hello everyone,

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#29 of 34 Old 01-01-2009, 11:25 AM
 
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I just finished reading the classic text Amish Society by John Hostetter (4th edition), and I believe it may have mentioned something about this. I will check it out of the library again next week and get back to you.
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#30 of 34 Old 01-01-2009, 11:31 AM
 
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I don't know if this is helpful, but I saw a documentary about the research the Amish participate in because they have certain genetic disorders/diseases they inherit as a closed society. They use The Clinic for Special Children. Maybe this link is a place to dig deeper for what you're looking for.

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