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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

#161
post #160
post #139

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> Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else. Can you point to any that you have read?

Here are a couple: - Parents: https://pmc.ncbi.nlm.nih.gov/articles/PMC3353148/pdf/nihms37... - People who have DS: https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/pdf/nihms37... - Siblings of people with DS: https://doi.org/10.1002/ajmg.c.30101

Thank you. I hadn’t seen any of the literature on this.

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

#162
post #144

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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.

Last year? Its just a house in a residential neighborhood. Neighbors obviously did not want to interact with them very often, limited to a wave if one of them was taking out the trash. The segregation is pretty much desired by the neighbors and understood by the nurses. No one raising a family really wants to have to interact with mentally challenged non family people every day of their lives. Keeping the interaction limited means complaints don't happen.

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

#164

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Those sound like capitalism problems, not medical ones, to be probably too honest (HN doesn't generally vibe with class consciousness because so many tech bros sell out or dream of selling out one day, but). Society can afford to have support systems for people with disabilities and their supportive family, as evidenced by the fact that it is currently doing so indirectly (by paying enough for the husband's labor tha…

HN doesn't generally vibe with class consciousness because their high income makes them far more aligned with the "capitalist class" just like how a small business owner is much more aligned with the worker class despite being workers and business owners respectively, since it turns out that people do not value their theoretical "class" since it has no relevance to their life.

No. They want to believe that, but the reality is that even in this little bubble (with a median income multiple times that of general population's median), anyone that works for a living is far more likely to experience homelessness than they are to join economic elites. Sure, you're able to be comfortable because unlike most of the economy you are compensated well, but you should still have worker solidarity (and humility).

Let me put it another way by making it less personal to tech: Hollywood celebrities, wildly successful people that basically everyone knows their names and faces, are still workers. Million dollar contracts BUT only if they play ball with the system and don't get themselves blacklisted for being too political or being too inconvenient saying no too many times to staring in soulless Disney slop, or whatever. They can retire early on that kind of money, get to a kind of stable non-participant status, sure, they can place pressure on their industry and on society to change to some degree, but they'll never call the shots because they don't write the checks.

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

#165

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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.

If you never interacted with the residents there, how are you so sure it was so bad? Nevermind the people in the group home — on what basis did you acquire the belief that the neighbors were “relieved” not to interact with them?

Maybe you’re right and this situation was terrible for everyone. Is this arrangement required? Is it the best we can do?

I don’t think most people would choose to live a life with many common afflictions. I certainly wish my lower back didn’t hurt all the time. That doesn’t invalidate my existence, and neither does my son’s Down syndrome invalidate his.

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

#166
post #73

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It says that they've developed a way to identify the extra chromosome(s) passed to a child by a malfunctioning germ cell, specifically chromosome 21 though presumably this method could be reproduced for other trisomy diseases. This could, most immediately, lead to a therapy that allows a couple that is going through in vitro fertilization to repair a zygote that has trisomy by correcting the number of chromosomes it…

At that point, wouldn't they just use a different egg? I'd expect that to be far less costly and less risky than this treatment.

To expand on what notimetorelax said, egg harvesting is a low risk but not a zero risk procedure which involves preparatory hormone injections, twilight sedation, and ultimately sticking a pretty fat needle into the ovaries. There's roughly a 1 in 1000 chance of serious complications for any woman that goes through it. If you're over 40 and your last round of harvesting only produced a handful of eggs cells and all of them with some kind of defect, repairing a damaged egg or zygote would be much less risky for the mother. What exactly the cost of a treatment based upon this discovery would be, I have no idea, but both processes are resource intensive.

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

#167
post #75

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Is it just me or do I feel like the society is way more accepting nowadays? I had to pretty much hide who I was during school due to fear of bullying/ not fitting in but most kids these days seem to be able to be themselves in many ways. I agree we can be friendlier though!

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

It didn’t just happen. It happened through struggle and its continuation is not guaranteed. Look at all the reactionary movements springing up around the world. This is not an area I believe we can settle on “good enough”.

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

#168

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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.

There is absolutely no benefit to being many things that some humans are.

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

#169
post #151

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You’re talking about a human person and making the case that the world would be better off if they had never been born.

Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world. Lots of regretful parents out there who would take it back if they could. All life is temporary. Quality of life for all involved is a material consideration.

> Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world.

No, it isn’t. “I wish you didn’t exist because your existence inconveniences me,” is a step away from “I should be able to kill you because you inconvenience me.”

You will likely think that I am being hyperbolic (“We’re just talking about if it was a good idea for these people to exist, not saying we should be able to kill them now that they do exist.”), but I suspect that you would not feel the same way if it was your existence being discussed this way.

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

#170
post #21

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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…

> Down Syndrome leads to an objectively worse outcome for the affected individuals. And their parents, I might add.

Please cite your sources and show your work.

My child with Down syndrome is a giant pain in my ass, I worry about him constantly, and there are days where I wonder “why me?”

The same is 100% true about my typically-developing daughter.

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