Scientists may have found a cure for Down Syndrome, ensuing backlash to... ensue.

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#1
Why havent we talked about this before in the Pit?

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.

The development is expected to help create new treatments for problems caused by Down syndrome -- but it also raises the prospect of eliminating the condition entirely.

Since it became public last month, the breakthrough has sparked a firestorm of reaction among parents, advocates, ethicists and people with the condition, said Dr. Brian Skotko, a medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital.

“This research really launches a million questions,” Skotko said.

At left, Rachel Mast, 14, in training with other students at her middle school to become student ambassadors to incoming sixth graders on Aug. 6, 2013...
Chuck France / Getty Images for NBC News
At left, Rachel Mast, 14, is training with other students at her middle school to become student ambassadors to incoming sixth-graders.
On one hand, almost everyone agrees there’s a need for treatments to help the 250,000 people in the U.S. living with Down syndrome, including the nearly 7,000 babies born with it each year.

On the other hand, it’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness -- and what it means to be human.

"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."

Brian Long of Boulder, Colo., is the father a 19-year-old son with Down syndrome. He welcomes the research, which could lead to treatments to boost Connor’s intellectual abilities and speaking skills and prevent disease. But he also wonders how tinkering with chromosomes could alter the essence of his son.

“So much of Down syndrome does impact the personality and character of the person,” said Long, 54. “In Connor’s example, we’ve known him for 19 years. We don’t want a wholesale change.”

Advocates like Julie Cevallos, vice president of marketing for the National Down Syndrome Society, emphasize that the research is still early.

“When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,’” said Cevallos, mother of a 5-year-old with the condition.

source

TL;DR - Down syndrome community: We must find ways to better treat those with Down syndrome. Scientists: We found a possible cure for Down syndrome. Down syndrome community: We didn't want a cure. Scientists:

Thoughts?
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#4
Quote by Carnivean
TL;DR - Down syndrome community: We must find ways to better treat those with Down syndrome. Scientists: We found a possible cure for Down syndrome. Down syndrome community: We didn't want a cure. Scientists:

Thoughts?

**** the down syndrome community
“This research really launches a million questions,” Skotko said.

this is the interesting part
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#5
I assume that there's a lot of internal conflict because the parents might be viewing it as having their kid "fixed" in a way

I'd be conflicted if I was a parent but only for about three seconds. If it actually works as a complete cure and it allows my kid to be a fully realized, absolutely normal person... Hell even if it just helped to reduce the medical risks and issues that DS can cause, I'd probably go for it. I'd want the best for my kid, you know?
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#6
This is kind of weird for me.

Like with Autism, I always thought it was weird to see commercials with celebrities like Stephen Tyler saying stuff like "We need to put an end to Autism."

I mean, first not all all autistics mind their condition, and second if we had commercials saying "We need to put an end to down syndrome" people would lose their shit.
#7
No matter what happens to my kid, I'll love him unconditionally. But if he had DS, and we were given the choice to either let him live his life under the constant care of his parents, complete with ridicule and abuse from classmates, OR, allow him to live a "normal life" (I hate that ****ing term, but I can't think of a better way to explain it). I think I'd look into curing his DS. Why anyone would choose otherwise is completely beyond me. Anyone who says that they would keep their kid the way he is is just trying to look good.
FORZA CATANIA
#8
Very misleading title.

I'm a molecular biology student who is focussing on cancer (a genetic disease, so I know a thing or two about genetics and trisomy 21).

First, silencing genes in eukaryotes is not even close to a new discovery. I'm actually surprised that no one has developed a silencing mechanism for the extra bit of chromosome that causes trisomy 21, however, I can see why scientists were reluctant to do the work considering:

Second, Silencing the gene after development has occurred won't really affect the development of the brain since the brain develops at birth and is thenceforth pruned at puberty. The person will still be ******ed despite the extra bit of chromosome being silenced unless the silencing takes place ASAP. If genetic profiling was legal (since you could potentially see whether your child would have any genetic diseases and you could opt to have it terminated, it is illegal in most countries) then people could treat their babies before they develop, thus preventing the ******ation effects of trisomy 21, but it's illegal, so why is this even important in modern society?

Honestly, the only thing that ******s contribute is that they are willing to do the grunt work of society. I have no problem with them being terminated, however, I am more than willing to have them as a part of the competition workforce for students.


EDIT: Actually, I wish that I did this research as an honours student, so that I could get the media attention and further my career.
Last edited by metal4eva_22 at Aug 12, 2013,
#9
I think it's great that it's been developed, and I'm in support of as many people as want to get it getting it. However I also feel that if the person with autism - or if they're under 18, their parents - should get the final say on whether or not they get it. On the one hand the mental ability of a person in that state to make that decision can be questioned, but on the other, giving them it if they don't want it feels wrong to me.

Obviously it's impossible for a mentally coherent person to enter the mind of someone with Down Syndrome and understand exactly how they perceive things compared to us, but I can't help but feel that this would be such a life-altering change for them, that doing it without their consent and forcing that on them is putting them through as much as if they were left as-is.

That said, I get a feeling that this is going to become a lot clearer and a lot more black-and-white once people start getting it, and we see just how a brain responds to that drastic an alteration.
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Last edited by necrosis1193 at Aug 12, 2013,
#10
So metal4eva you're saying the cure would have to be applied prior to childbirth? That would made sense.

And that whole thing about contributions to culture by downs people is probably the stupidest thing I've ever heard. Last I checked we ultimately remember people for what they did rather than their disability. FDR was a great president. Not a great president for someone with polio.
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#11
I would love to debate this issue with more politically minded people as I feel that it would benefit me in my future classes in uni.


Quote by necrosis1193

Obviously it's impossible for a mentally coherent person to enter the mind of someone with Down Syndrome and understand exactly how they perceive things compared to us, but I can't help but feel that this would be such a life-altering change for them, that doing it without their consent and forcing that on them is putting them through as much as if they were left as-is.

Flowers for Algernon, bro. It's a great book, and I think, as obviously someone who has never gone through that, is a great representation of what ******s (sorry for the politically incorrect version of the word, but what is the politically correct version of retard? Mentally challenged?)
#12
It doesn't seem like it's a perfect cure. It could take away the challenges, but also take away what makes a person that person.

Like if you've known somebody for 28 years, would you really want that person to go away? You're looking at it purely from a "MAKE THEM NORMAL" way. I mean, parents tend to love their kids regardless of disability, if they're a felon, etc. If they love their kid, why would they want to lose that person for ever?

Would your parents want your personality to change forever, regardless of what benefits the change would bring?
*-)
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i kinda wish we all had a penis and vagina instead of buttholes

i mean no offense to buttholes and poop or anything

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#13
Quote by metal4eva_22
Very misleading title.

Honestly, the only thing that ******s contribute is that they are willing to do the grunt work of society. I have no problem with them being terminated, however, I am more than willing to have them as a part of the competition workforce for students.


EDIT: Actually, I wish that I did this research as an honours student, so that I could get the media attention and further my career.

Sir, I believe that you have never truly spent time with a ******ed person. Excuse me...mentally disabled. I don't think that will *** out
Anyways, I've had a few years experience as a partner for the Special Olympics, meaning that I play sports with these people. I played with people of age ranging from 14-25. It was a...strange culture to say the least, but there was nothing but good vibes. Strange, because conversation was always a little difficult and most of them were really bad, but you couldn't help but be happy around them. And they were all happy too. It was like their joy of playing this fun sport spread throughout the field. The friendliness of some of the people was astounding, and people I've never met before will come up and talk to me about something funny.
These people offer much more than cheap labor, which i will agree to an extent that yes, they do, but they offer a different outlook for "normal" people.

Did that make any sense? I hope so.

Anyways, on topic, I see nothing wrong with this research. If I had a disabled child, I'd do this. Why? Because the world is such a wonderful place when equipped with a fully functional brain. It really is, and i feel very fortunate that I have no brain defects (that I'm aware of). And I doubt it would just *poof* make them normal, but at least be able to function better and live longer!
And I bet their good vibe will still remain, thus creating a superhuman
#14
Quote by metal4eva_22
Flowers for Algernon, bro. It's a great book, and I think, as obviously someone who has never gone through that, is a great representation of what ******s (sorry for the politically incorrect version of the word, but what is the politically correct version of retard? Mentally challenged?)

durr
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#15
Quote by snipelfritz
So metal4eva you're saying the cure would have to be applied prior to childbirth? That would made sense.

And that whole thing about contributions to culture by downs people is probably the stupidest thing I've ever heard. Last I checked we ultimately remember people for what they did rather than their disability. FDR was a great president. Not a great president for someone with polio.

I am saying that, for maximal effects, since development is a crucial step in, well, development. Your brain (which is affected by your genes) is developed according to your genes, and if you have a genetic anomaly, such as trisomy 21, then you brain will develop abnormally.
#16
Quote by metal4eva_22
If genetic profiling was legal (since you could potentially see whether your child would have any genetic diseases and you could opt to have it terminated, it is illegal in most countries) then people could treat their babies before they develop, thus preventing the ******ation effects of trisomy 21, but it's illegal, so why is this even important in modern society?


but aren't there relatively accurate downs tests for pregnant women?
#DTWD
#17
Quote by SunshineMusicO

Did that make any sense? I hope so.

It did. I don't claim to have any-more reason than a child with trisomy 21. I only claim that it will not be a reversal of what has already occurred, since that would be impossible.


Quote by primusfan
but aren't there relatively accurate downs tests for pregnant women?

There are. Such as having a test for three copies of the karyotype 21 gene, which is fairly easy to diagnose is easy, but illegal. Which brings me closer to the issue of legalizing the tests for trimsomy 21. It should be legal to know whether of not you child will have trimosy 21 ) down's syndrom).
#18
Quote by lolmnt
It doesn't seem like it's a perfect cure. It could take away the challenges, but also take away what makes a person that person.
Oh sure. Do not stop the problems from happening, just do nothing and then say you wish there were a cure. Seriously, sir, you're smarter than that.
Quote by primusfan
but aren't there relatively accurate downs tests for pregnant women?
Yes, there are.
Quote by metal4eva_22
Which brings me closer to the issue of legalizing the tests for trimsomy 21. It should be legal to know whether of not you child will have trimosy 21 ) down's syndrom).
Agreed!
Last edited by AllJudasPriest at Aug 12, 2013,
#19
Quote by AllJudasPriest
Oh sure. Do not stop the problems from happening, just do nothing and then say you wish there were a cure. Seriously, sir, you're smarter than that.
The point is that the cure could have other consequences that have to be considered.
*-)
Quote by Bob_Sacamano
i kinda wish we all had a penis and vagina instead of buttholes

i mean no offense to buttholes and poop or anything

Rest in Peace, Troy Davis and Trayvon Martin and Jordan Davis and Eric Garner and Mike Brown
#20
Quote by The Madcap
This is kind of weird for me.

Like with Autism, I always thought it was weird to see commercials with celebrities like Stephen Tyler saying stuff like "We need to put an end to Autism."

I mean, first not all all autistics mind their condition, and second if we had commercials saying "We need to put an end to down syndrome" people would lose their shit.


Bad luck! If they are a burden, they get fixed.

What's wrong with that?

.
#21
Quote by lolmnt
The point is that the cure could have other consequences that have to be considered.
Obviously, right now there are. As the situation develops, the more those consequences will either disappear or have a formula for cope. You don't think the scientists have realized this already?
#22
Quote by AllJudasPriest
Obviously, right now there are. As the situation develops, the more those consequences will either disappear or have a formula for cope. You don't think the scientists have realized this already?
No I don't think that. Why are you putting words in my mouth?

I was replying to the OP. Are you even reading my posts?
*-)
Quote by Bob_Sacamano
i kinda wish we all had a penis and vagina instead of buttholes

i mean no offense to buttholes and poop or anything

Rest in Peace, Troy Davis and Trayvon Martin and Jordan Davis and Eric Garner and Mike Brown
#23
Quote by Carnivean
TL;DR - Down syndrome community: We must find ways to better treat those with Down syndrome. Scientists: We found a possible cure for Down syndrome. Down syndrome community: We didn't want a cure. Scientists:

Thoughts?

maybe if you weren't so goddamn stupid you could have read the last few lines of the ****ing article
#24
‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,


I wonder if the people who subscribe to this position would like to live with Down Syndrome themselves.
#25
wtf tests for down syndrome being illegal.
wtf,seriously das ****...
genetic engineering all the way.
#26
Good. Now some people can take the cure and other's can't. It has got to save a lot of babies.
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#27
Quote by metal4eva_22
I am saying that, for maximal effects, since development is a crucial step in, well, development. Your brain (which is affected by your genes) is developed according to your genes, and if you have a genetic anomaly, such as trisomy 21, then you brain will develop abnormally.

But you can't like take someone who is 15 with Down's and start injecting some miracle drug over a month or two and it's like they never had it in the first place?...obviously right?
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#28
Quote by snipelfritz
But you can't like take someone who is 15 with Down's and start injecting some miracle drug over a month or two and it's like they never had it in the first place?...obviously right?

Yes
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I can't believe you are whoring yourself out like that.

ಠ_ಠ
#29
Are they any D.S. patients that have turned down the chance to be cured if this method comes thru?

edit: from what i understand this method attacks what is causing the D.S. and then the patient has to regain their life back from start?
Last edited by jrcsgtpeppers at Aug 12, 2013,
#30
Testing to see if your child has DS isn't illegal, its done routinely in every pregnancy. Genetic profiling is the illegal part. The test that is done is an anomaly scan and you can see physical features that can indicate down syndrome (or another genetic disorder) and then have amniocentesis or something similiar where a sample of fluid is taken from the amniotic sac and then cells that are floating around up in there are tested for the presence of trisomy 21 (or other). This is done so that the mother can be helped to make a fully informed decision about whether to continue with the pregnancy or not.
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#31
I don't see an issue here.

If you don't want a kid with Down's Syndrome then cure them.

If you for some reason do want a kid with Down's Syndrome then don't cure them.

EDIT:

"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."


All of my wat.

What exactly is positive about people with Down's Syndrome that people without Down's Syndrome are missing out on?
Last edited by Random3 at Aug 12, 2013,
#32
"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."

Translation:

"Yes, let's let these people function at base capacity and struggle through life without all their faculties because it makes the rest of us feel better about not having a disability."

What a stupid thing to say. Try swapping the word autism with any other disability, and see how that flies.
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#33
So this would only work for very, very young children, and only to a certain degree?

I don't understand the mentality of "We don't want a cure, we want to give support to sick people instead of making them not sick" with a thing like Down's, but then I don't know anybody with Down's.

I'm going for a leap here and assuming that it's sorta like people who are on heavy anti-depressant medication or beta-blockers, and people feel they're "not themselves". Yeah, they may have their conditions suppressed, but at the cost of having their personality and true emotions suppressed as well.

Then again, this would only work for underdeveloped minds, so it's not really the same as changing an already developed person, which is why I don't understand it.

Oh well, I'll trust people who actually have to deal with it opinions' more than mine on this one.

EDIT: That being said, if a doctor told me "Your newborn child has Down's, and with this his/her life would be improved and possibly lengthened with absolutely no adverse side effects" I'd give them all the money to be able to do that.
Last edited by CoreysMonster at Aug 12, 2013,
#34
Quote by Random3



All of my wat.

What exactly is positive about people with Down's Syndrome that people without Down's Syndrome are missing out on?


This x quadrbillion999ths.

There are questions to be debated about this, but over-all I`ll say it`d moraly just wrong to let your kid have Down syndrome. That just screams of ego.
#35
So, applying for University is going to become even more competitive?
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#36
In a world that supports Sharpton, Jackson, and Farrakhan, is this any surprise at all?
#37
Quote by lolmnt
It doesn't seem like it's a perfect cure. It could take away the challenges, but also take away what makes a person that person.

Like if you've known somebody for 28 years, would you really want that person to go away? You're looking at it purely from a "MAKE THEM NORMAL" way. I mean, parents tend to love their kids regardless of disability, if they're a felon, etc. If they love their kid, why would they want to lose that person for ever?

Would your parents want your personality to change forever, regardless of what benefits the change would bring?

this is what I was thinking

Quote by wiggedy
Bad luck! If they are a burden, they get fixed.

What's wrong with that?

.

Yes, because everyone with autism is a burden
___

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Last edited by WCPhils at Aug 12, 2013,
#38
Quote by lolmnt
The point is that the cure could have other consequences that have to be considered.


If the 'disease' were a tumor that affected a person's personality in a 'positive' fashion, but were ultimately going to cause other health problems and cause them to lead a much shorter life, it wouldn't even be a question.

So why is this?

Trisomy 21 is a genetic DEFECT. If it can be alleviated it should be.

The fact that some (many) of the people with the defect are kind, gentle and patient is a side effect and is irrelevant.
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#39
Quote by Arby911
If the 'disease' were a tumor that affected a person's personality in a 'positive' fashion, but were ultimately going to cause other health problems and cause them to lead a much shorter life, it wouldn't even be a question.

So why is this?

Trisomy 21 is a genetic DEFECT. If it can be alleviated it should be.

The fact that some (many) of the people with the defect are kind, gentle and patient is a side effect and is irrelevant.

This.

Then again, despite this obviousness, people are attached to their roles as providers and carers for the disabled. It is similar to parents who feel an aching sadness as their child develops independence, and that is an extremely common phenomenon.

It is a selfishness, no doubt, but it is wholly understandable.

Also, it is always worth restating the value and the right to exist of disadvantaged populations. The disease itself is dehumanising, we can profit empathically by familiarising ourselves with their reality.
Last edited by TooktheAtrain at Aug 12, 2013,
#40
Nobody in their right mind would be happy to have a kid with down syndrome, so this cure can only be a good thing.

Did you hear the story about the person with down syndrome who did something ground breaking enough to have their name written down in history?
NOPE! Because it never happened and never will.

No offence to those with down syndrome, but they add nothing of use to society. I bet most people with it have crappy lives and those related to them have to deal with them when I bet they rather wouldn't.

Now that there is seemingly a cure, there is nothing for anyone to complain about.

Unless you have a fetist for ******s.
I have nothing important to say
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