# Lifestyles & Discussion > Science & Technology >  Down Syndrome 'Cure' Causes Soul-searching Among Parents

## green73

http://www.nbcnews.com/health/could-...ing-6C10879213




> In the 14 years since her daughter, Rachel, was born with Down syndrome, Jawanda Mast has always been clear that shed change the condition if she could.
> 
> I couldnt love her more, but I would give almost anything to take away that extra chromosome, the Olathe, Kansas, mom wrote on her blog. While I may know shes perfect, the world doesnt.
> 
> But when Massachusetts scientists announced recently that theyve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked Mast  and the rest of the disability community.
> 
> Its so hard to imagine you could actually do that, Mast told NBC News. Yes, I would take away the challenges, I would take away the health risks. But now I also stop and say, Oh my goodness, how would that impact the rest of her?
> 
> Hailed as a cure in a Petri dish, the research by scientists at the University of Massachusetts Medical School is the first to find that it may be possible to switch off the genetic material responsible for the condition that causes cognitive delays, heart defects and shortened lifespans.
> ...

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## FSP-Rebel

I can understand the sentiments of those that question whether they're for a wholesale genetic modification that would eradicate down syndrome permanently. It obviously does something to parents that have a kid w/ an issue like this or related mental malfunctions and they have to carry the burden for the rest of their life or until the offspring parishes. For this reason and perhaps because I have no paternal instincts, I don't plan on having any of my own offspring tho I haven't ruled out adoption. I say use science to our advantage here and get rid of this scourge on humanity in the same we got rid of polio and small pox. My aunt got polio as a child and has been on crutches ever since. I can't imagine being in one of those outlier categories, it must seem so lonesome at times.

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## 69360

The issue seems to be more that some of these parents get their sense of purpose in caring for down's children.

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## alucard13mm

One reason abortions is done is because some parents don't want "genetically defective" offspring... So if this can save babies from being killed, I am for it.

Silencing the gene is not the same as curing it. It will have a good chance of appearing in the person's next generation offspring. 

The reason why this is allowed to go forward with research is because of that. It does not cure it. The treatment will always be needed since its not a cure. The next generation will need it as well.

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## CaptUSA

This same discussion has taken place in the deaf and blind communities.  There are probably pros and cons to almost every human condition.  I understand the worries, but if mothers are provided with this info prior to deciding to terminate a pregnancy, perhaps it will change their minds and another human soul will be allowed to exist.

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## donnay

> This same discussion has taken place in the deaf and blind communities.  There are probably pros and cons to almost every human condition.  I understand the worries, but if mothers are provided with this info prior to deciding to terminate a pregnancy, perhaps it will change their minds and another human soul will be allowed to exist.



Think of all the classical music that we could not hear had Ludwig van Beethoven's mother had this technology.  

Scientists are not always right!

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## Anti Federalist

I'm as skeptical of medical science as anybody, but am I reading this right?

"Maybe we shouldn't wipe this disease out, because it'll put the Down Syndrome Industry out of business."

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## angelatc

As long as they don't make it mandatory, go for it.

But as long as we're heading to a socialist health care system, it seems silly to assume it won't be mandatory.  The evil progessives don't hesitate to endorse letting the sickest and weakest die to save money.   Palin was straight up told she should have aborted her Down Syndrome baby.

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## presence

Very interesting, I have a family member w/ Down Syndrome.

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## thoughtomator

This would be a good time for those not familiar with it to look up Munchausen by Proxy Syndrome.

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## lib3rtarian

I am surprised at the people who doesn't want this condition cured forever. Selfish $#@!s. They don't want a normal, healthy kid just so that they can feel like miss goody-two shoes by looking after a DS kid? What about the social stigma a DS person has to go through in life? I bet these are the religious bible-thumpers who feel as if every single thing is a "gift from God". Oh, you got raped and now you got a fetus with severe birth defects? Haha, live with it, because it's "God's gift" to you.

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## angelatc

> This would be a good time for those not familiar with it to look up Munchausen by Proxy Syndrome.


Because having a Down Syndrome child means you're some crazy person, somehow in it only for yourself?

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## otherone

> This would be a good time for those not familiar with it to look up Munchausen by Proxy Syndrome.


I owe you rep.

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## angelatc

> I am surprised at the people who doesn't want this condition cured forever. Selfish $#@!s. They don't want a normal, healthy kid just so that they can feel like miss goody-two shoes by looking after a DS kid? What about the social stigma a DS person has to go through in life? I bet these are the religious bible-thumpers who feel as if every single thing is a "gift from God". Oh, you got raped and now you got a fetus with severe birth defects? Haha, live with it, because it's "God's gift" to you.



Yeah, I see both sides of it.  But people who don't already have children will see it much differently than those who do, especially those who have Down Syndrome babies.

When I was pregnant, there were tests that could be run to test for Down Syndrome.  I opted not to have the tests for several reasons.  But if they had been able to tell me that there was a treatment other than abortion should the test come back positive, I would have made a different decision.

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## otherone

> Because having a Down Syndrome child means you're somehow in it only for yourself?


I think the PC progressive police are going to struggle with this one.  The "nothing's wrong with him/her", "special", don't-use-the-"R"-word-crowd may have to admit that their little snowflake actually has a deficiency.

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## angelatc

> I think the PC progressive police are going to struggle with this one.  The "nothing's wrong with him/her", "special", don't-use-the-"R"-word-crowd may have to admit that their little snowflake actually has a deficiency.


We all have deficiencies.

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## RockEnds

I guess one could question whether or not this would actually work, but there have been some incredible gains in epigenetics.  This is possible.  Only the duplicate would be turned off.  The person will still have a working copy of the gene.  As long as there are no risks that haven't been mentioned, I don't see the down side here.

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## oyarde

I am not a scientist , how do you get an extra chromosone ? Does this still happen at the same rate as in the past ?

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## RockEnds

> I am not a scientist , how do you get an extra chromosone ? Does this still happen at the same rate as in the past ?


It's called a trisomy.  Most of them are not survivable, but Down's Syndrome is.  It happens when the cell divides.  It can happen before conception, and it can also happen after conception.  There's also Mosaic Downs.  In that case, only some of the cells are affected.

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## angelatc

> I am not a scientist , how do you get an extra chromosone ? Does this still happen at the same rate as in the past ?


I know older women are much more likely to give birth to Down Syndrome children babies, so it would make sense that the numbers are rising because women aren't having babies as young as they used to.

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## CaseyJones

hmmm.... Flowers for Algernon

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## oyarde

> I know older women are much more likely to give birth to Down Syndrome children babies, so it would make sense that the numbers are rising because women aren't having babies as young as they used to.


That makes sense, I imagine the avg age of a young Mother 30 - 35 yrs ago would be much less than currently.

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## presence

> I know older women are much more likely to give birth to Down Syndrome children babies, so it would make sense that the numbers are rising because women aren't having babies as young as they used to.



The same is actually true of older fathers as well.  Radiation exposure is also a risk factor; though there was a study that showed being in the airline industry was not a significant risk factor.

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## dannno

> "If Down syndrome were completely cured, the world would lose something from the absence of that culture," said Skotko, who has a sister with the condition. "There is something positive that people with Down syndrome contribute to the world."


I've never heard down syndrome described as a 'culture' before.

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## heavenlyboy34

> Think of all the classical music that we could not hear had Ludwig van Beethoven's mother had this technology.  
> 
> Scientists are not always right!


That's stretching it quite a bit.  Even when Beethoven was in the last stages of his deafness, he would put his head close to a piano and was able to hear it well enough to play.  He was able to keep his disability secret almost to the end.

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## specsaregood

> I've never heard down syndrome described as a 'culture' before.


Ever been to a party with a bunch of folk with downs?

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## pcosmar

> As long as there are no risks that haven't been mentioned, I don't see the down side here.


That is the part that concerns me. Unknown or unadvertised side effects.

And though I appreciate true medical breakthroughs,, I am concerned with what meddling in Genetics will lead to.

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## Christian Liberty

> I'm as skeptical of medical science as anybody, but am I reading this right?
> 
> "Maybe we shouldn't wipe this disease out, because it'll put the Down Syndrome Industry out of business."


I know Down's is even tougher to deal with so I can't comment on it, but having Asperger's Syndrome is part of who I am.  I don't think I'd want to be rid of it even if I could.

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## kcchiefs6465

> I know Down's is even tougher to deal with so I can't comment on it, but having Asperger's Syndrome is part of who I am.  I don't think I'd want to be rid of it even if I could.


If I had a child with down syndrome I would like them to be cured. The parent can't be around forever and there is nothing wrong with wishing your child be better abled to take care of themselves independently. It probably would change their personality a little. Their underlying traits I'm not so sure. (their character)

I'm also a little concerned with the issue Pete brought up. There are issues beyond what we are intelligent enough to discern. A lot of their research is ethically horrid and the results of which very well could end humanity. (not particularly talking about this.. but a number of things they do)

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## thoughtomator

> Because having a Down Syndrome child means you're some crazy person, somehow in it only for yourself?


No, but choosing not to cure a debilitating condition that can be cured - presuming there are no negative side effects that are equal to or greater than the cure - brings into question the motives of the caretaker.

I know for a fact that some people have a desperate need to care for someone (someone in particular, not just anyone) and it is not infrequent for them to even go as far as killing that person in order to prevent them from getting better and no longer needing the caretaker. In the diseased caretaker's mind, the patient's entire reason to exist is to be cared for by them.

A lot of parents do this too. They fight against their children maturing so they can be the parent forever and keep the child dependent on their help.

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## fisharmor

> I know Down's is even tougher to deal with  so I can't comment on it, but having Asperger's Syndrome is part of who  I am.  I don't think I'd want to be rid of it even if I could.


You're also going to realize, in about 20 years, that you're not the person you were way the hell back in 2013.
Or rather, that you are, but you're not.
$#@! happens, and people change.
It could be a girl.  Or a view from a mountaintop.  Or some really good pot.  Or a board game.  Or a surgery.

Saying you're going to live with a socially debilitating condition  because you can't picture life otherwise... well, I hope that if you are  ever presented hope for a cure, that you'll seriously consider it.   Because your life is going to be different later, whether you want it to  be or not.

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## Petar

I think that you would pretty much have to have downs syndroms in order to not want to cure a kid who has downs syndrome.

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## eduardo89

> Think of all the classical music that we could not hear had Ludwig van Beethoven's mother had this technology.  
> 
> Scientists are not always right!


Beethoven's hearing didn't start deteriorating until he was in his early 30s and it was only in the last decade of his life that he became deaf.

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## mosquitobite

> We all have deficiencies.


yep. _If only we could cure the $#@! gene..._

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## eduardo89

> I know older women are much more likely to give birth to Down Syndrome children babies, so it would make sense that the numbers are rising because women aren't having babies as young as they used to.



Maternal age at term and Risk of Down’s syndrome

20 1:1450
30 1:940
40 1:85
43 1:45
44 1:40
45 1:35
46 1:30
47 1:30
49 1:25

http://www.wolfson.qmul.ac.uk/epm/sc.../calcrisk.html

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## otherone

> yep. _If only we could cure the $#@! gene..._


Easy...two lips, some thread, and a needle...

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## dannno

> Ever been to a party with a bunch of folk with downs?


The DNC??

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## eduardo89

> Ever been to a party with a bunch of folk with downs?


I have. A cousin of mine has down syndrome and I went to his birthday party when he turned 50. There were at least 15 other people with Down syndrome there. It made _me_ feel like the 'different' one.

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## heavenlyboy34

> Beethoven's hearing didn't start deteriorating until he was in his early 30s and it was only in the last decade of his life that he became deaf.


Truth^^

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## James Madison

This is actually a debate? Whether to treat them or let them suffer?

I hope this opens the door to other treatments, both medical and cosmetic.

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## mtr1979

> This is actually a debate? Whether to treat them or let them suffer?
> 
> I hope this opens the door to other treatments, both medical and cosmetic.


I know I was left with a WTF feeling when reading this article.  If I talked to these people in real life I would tell them it isn't about you.  What ever happened to the idea of giving the person with the medical issue the choice to receive treatment?

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