Earlier quoted context omitted.
> 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
Scientists may have found a way to eliminate chromosome linked to Down syndrome
161–170 of 520 posts
Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome
#162Earlier quoted context omitted.
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
#163Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome
#164Earlier quoted context omitted.
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.
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
#165Earlier 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.
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
#166Earlier quoted context omitted.
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.
Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome
#167Earlier quoted context omitted.
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
Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome
#168Earlier 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.
Re: Scientists may have found a way to eliminate chromosome linked to Down syndrome
#169Earlier quoted context omitted.
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.
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
#170Earlier 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…
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.