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Scientists may have found a way to eliminate chromosome linked to Down syndrome

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Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#141

Post by 6502nerdface »

ghurtado wrote: post #99
puppycodes wrote: post #10

Interesting, I wonder what else this might lead too! Encouraging we might be getting somewhere. I used to live near a Down syndrome center where a bunch of folks lived and I remember this one lady who was kitted out with Britney Spears everything, lunchbox, t-shirt, hat, and headphones. Everyday I passed by the bus stop she would be dancing her heart out to a Britney track waiting for the bus and it made my world a l…

See, it's stories like this one that make me really question just how ethical it is to completely eliminate Down's from the gene pool. I understand it's the correct medical and scientific thing to do, it's just that it sometimes feels a little bit like eugenics for me.

Wait what's wrong with voluntary eugenics? Perhaps the fact that something both "feels like eugenics" and is understood as the "correct medical and scientific thing to do" should cause one to reassess any unexamined, knee-jerk, blanket revulsion to the concept of eugenics that one may have.

Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#142

Post by smeej »

UltraSane wrote: post #30
wyldfire wrote: post #15

Earlier quoted context omitted.

I don't know if it's the case for folks with Down Syndrome (I suppose it's likely not), but hearing-impaired folks have their own culture to the point that in the past it was seen as some as a betrayal to the community to seek out cochlear implants. I think having their own language does a lot to create unity among them. All that above is to say that I wonder if some folks in Down Syndrome might actually prefer their…

There is absolutely no benefit to Down Syndrome.

Surveys consistently indicate that people with DS, their family members, and people who know them consider their lives better because of it.

That's a benefit.

Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#143

Post by vtbassmatt »

devonbleak wrote: post #72
afavour wrote: post #63

Earlier quoted context omitted.

Honestly it’s confounding to even think about it. Aborting a fetus with Down’s syndrome? Feels cruel to deprive someone of life for that. But if it meant you went on to have another child you otherwise wouldn’t have then you’re giving life. I think at a certain point you can’t consider this stuff rationally.

I have a cousin with DS. You have to be committed and have the means to raise a child with extreme needs. Many of them will live with their parents their entire lives and will not develop cognitively beyond their tweens (hence the Britney Spears anecdote above). The ones that do move out tend to have to go to a place that specializes in assisting them. They can also have pretty extreme health issues. Yes, they can be…

I think this point would be better made without using the word “extreme” so much. All children bring new challenges; kids with DS often bring more; my child with DS has never, ever been an “extreme” challenge (just like most of the other families with kids with DS we know). There are definitely outliers where the “extreme” applies, but it’s not a helpful way of thinking about DS in general.

Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#144

Post by smeej »

wonderwonder wrote: post #74
wyldfire wrote: post #15

Earlier quoted context omitted.

I don't know if it's the case for folks with Down Syndrome (I suppose it's likely not), but hearing-impaired folks have their own culture to the point that in the past it was seen as some as a betrayal to the community to seek out cochlear implants. I think having their own language does a lot to create unity among them. All that above is to say that I wonder if some folks in Down Syndrome might actually prefer their…

I used to live near a down syndrome living facility. Essentially a house converted into a care facility in a neighborhood. ~8 - 10 people with downs lived there. Very few visitors (parents), almost all the cars belonged to the nurses. Isolated from everyone they lived around and kept away from the neighbors (I'm sure to the neighbors relief). required constant care. I don't think its a life most would choose.

How long ago was this?

I ask because segregation like that was considered standard of care decades ago, but has not been in decades now too, so if it was recent, it's not following current best practices, and if it was long ago, it's worth noting that this is no longer the standard of care, indeed because it wasn't helpful and people would not choose it.

Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#146

Post by samplatt »

mynameisvlad wrote: post #98
hilsdev wrote: post #75

Earlier quoted context omitted.

You’re right the world is a lot more accepting. No matter how much things improve and how positive the trajectory though, there will be someone online who tells us it’s not enough

As someone that lives as multiple minorities, both visible and not, this is very much untrue. And that applies for many definitions of "normal". A person outside the "norm", in whatever category, is accepted far less than you claim. Sometimes it may not be visible or even intended, but it's there.

The whole world (not just America) has polarising hateful propaganda aggressively pushed at them for... oh about 2-3 generations now.

There's a lot of people that have woken up to this and are loving and accepting, and sometimes it can feel like this is becoming the norm when you're able to surround yourself with that kind of person... but you're right. It isn't "the norm" it just normal enough for some lucky people.

Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#147

Post by smeej »

hankman86 wrote: post #79
gerdesj wrote: post #21

Earlier quoted context omitted.

As soon as someone starts ascribing towards a "normal" and using the pronoun "them", warning bells should go berserk.

No. Down Syndrome leads to an objectively worse outcome for the affected individuals. And their parents, I might add. We should not let compassion for these people obstruct some basic facts. My only consideration would be the potential risks and side effects that are to be expected for any medical intervention. But if we were expecting a child that was diagnosed with Down Syndrome, I would not hesitate for a second t…

What is the objective standard? Subjectively, surveys consistently report that those who have DS and their families consider it a better outcome, so I'd like to know more about the details of an objective standard that ignores or overrides the reporting of those closest to the experience.

Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#148

Post by vicnov »

vtbassmatt wrote: post #126
orbisvicis wrote: post #94

Earlier quoted context omitted.

I do wonder if the elimination of all genotypes with Down's Syndrome would also result in a significant reduction in beneficial or benign genes. I've had smart pets. I've never had children. I sometimes envision smart pets as like an X-year old child with Y-year old trait, almost as a person with a disability. If a child can't achieve independence and a life of their own, why let all parties suffer through that ordea…

Why do you think people with Down syndrome can’t “achieve independence and a life of their own”? And what makes you think they, or their families, see their existence as suffering?

because alot of times when they do it makes the news and because when it does happen.. it usually happens in (very few) "first world countries"?

Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#149

Post by ksenzee »

loeg wrote: post #38
wyldfire wrote: post #15

Earlier quoted context omitted.

I don't know if it's the case for folks with Down Syndrome (I suppose it's likely not), but hearing-impaired folks have their own culture to the point that in the past it was seen as some as a betrayal to the community to seek out cochlear implants. I think having their own language does a lot to create unity among them. All that above is to say that I wonder if some folks in Down Syndrome might actually prefer their…

People are giving you shit because Down Syndrome sucks, but being deaf sucks too, and withholding hearing from kids of deaf adults is and was child abuse.

Cochlear implants aren't magical hearing restorers. If they were, you'd be right. But they aren't. There are limitations. Music is especially difficult to perceive properly.

Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome

#150

Post by vtbassmatt »

loeg wrote: post #35
RajT88 wrote: post #14

Earlier quoted context omitted.

I am not advocating any course in particular. But I will observe that when such treatments become available, such conditions become a marker of lower socioeconomic class and the people with the conditions get treated less well by society. This is why we need a better healthcare system.

It's hard to imagine a treatment cost so high that it wouldn't be worth the USG paying for it. Down syndrome kids and adults have some quantifiable economic cost; normal adults are worth some other quantifiable economic benefit; the difference is going to be significantly more than the cost of treatment.

I don’t think I entirely disagree with your position. However, positioning my kid (and others with DS) in opposition to “normal” makes it hard to engage respectfully. As a parent of one typically-developing child and one with Down syndrome, I feel qualified to say they both come with quantifiable economic costs. Quantifiable economic benefits are pretty far in the future for both of them (they’re 11 and 8, if it helps ground my points).
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