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CRISPR takes important step toward silencing Down syndrome’s extra chromosome

medicalxpress.com

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Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#121

Post by ceejayoz »

azan_ wrote: post #117
ceejayoz wrote: post #116

Earlier quoted context omitted.

For where this gets complex, you can look at the Deaf community. Crippling disease? Or normal variation in humanity? There's significant debate, and a lot of Deaf people really bristle at the idea of eliminating their identity.

I think autism (mild one) is not a bad area for this discussion either. But Down's syndrome? Absolutely not.

I tend to agree, but like autism, Downs varies in severity.

That we permit (and widely practice) pregnancy termination makes it an easier call for me, though.

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#122

Post by fisherjeff »

flextheruler wrote: post #119
MSFT_Edging wrote: post #114

Earlier quoted context omitted.

Not to downplay, but is it wrong to assume you're self sufficient in daily life? Work a job and pay your bills? You list your site and have a seemingly lots of professional experience. Some of these conditions do make life harder, but there's a big difference between high functioning Autism and disabilities that make someone 100% dependent on others.

It's so odd to me that we haven't come up with a term for high functioning autism to separate from low functioning. It's ridiculous to me that a commenter with this background can superficially claim to be suffering from the same disability as a family member I have who has required a caretaker to not die and would probably be totally uninterested or unable to even give an opinion on a complex subject like this. I ca…

Dr. Asperger may or may not have been sorting autistic children into high- and low-functioning groups so that the higher group (with “Asperger’s”) could go on to become good Nazis and the lower group could be euthanized.

https://en.wikipedia.org/wiki/Hans_Asperger

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#123

Post by thinkingtoilet »

voidUpdate wrote: post #85

I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carers and the people around them. I can imagine that some people would have preferred it if they were able to "cure" it. I've often felt in the past that I would have preferred to have been born without autism and ADHD, and while I've been coping a little better w…

Ignore commenters trashing you. It is very ok to have conflicted feelings about something like this. I think this is a good thing but understand where you're coming from. Let me tell you my family's story.

I have a brother with developmental disabilities. Not Down Syndrome, but something similar. He (and I) were lucky enough to be born into an upper-middle class family where my brother went to a school where people were kind to him and where services were available. Despite everything going about as well as it could, it still is a major tax on my family. Constant fund-raising for the home he's living in. Major medical problems through out his life. Things like that. When I agreed to kids with my wife it was on the condition that we do genetic testing and abort the fetus if there was an issue.

My mother has invested her life into this child and loves him more than anything. One day we were talking about death and I casually said something along the lines of "as long as I don't see you at funeral" I'll be ok. Implying she should die first so she doesn't have to deal with the sadness of seeing him die. She then said that she wanted my brother to die first. I was stunned. I asked why. She said she wanted to know he was taken care of. It completely floored me. People with Down's (and similar disabilities) can bring so much joy into this world. They can live very happy lives. I understand how it can be hard for people who don't have my experience to feel like you're feeling. However, I wouldn't wish it on anyone. And I think it's a good thing for society to stop babies being born that are so disabled they'll never be able to take care of themselves.

Just my two cents.

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#124

Post by CalRobert »

flextheruler wrote: post #119
MSFT_Edging wrote: post #114

Earlier quoted context omitted.

Not to downplay, but is it wrong to assume you're self sufficient in daily life? Work a job and pay your bills? You list your site and have a seemingly lots of professional experience. Some of these conditions do make life harder, but there's a big difference between high functioning Autism and disabilities that make someone 100% dependent on others.

It's so odd to me that we haven't come up with a term for high functioning autism to separate from low functioning. It's ridiculous to me that a commenter with this background can superficially claim to be suffering from the same disability as a family member I have who has required a caretaker to not die and would probably be totally uninterested or unable to even give an opinion on a complex subject like this. I ca…

Perhaps including milder forms of autism under the term was a useful way to reduce funding for the intensive care and therapy required by those with more severe forms (e.g. the nonverbal), since we can now frame these things as “changing who they are” etc. and not, in fact, necessary.

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#125

Post by TeMPOraL »

voidUpdate wrote: post #85

I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carers and the people around them. I can imagine that some people would have preferred it if they were able to "cure" it. I've often felt in the past that I would have preferred to have been born without autism and ADHD, and while I've been coping a little better w…

> On the other hand, this feels a bit like eugenics, and a slippery slope towards designer babies where you can pick and choose their attributes.

We can discuss pros and cons of freedom of choice of genetics for your children (an opposite spin on the same idea as calling it "designer babies"), but eugenics is a thought-terminating cliche at this point. There's whole space of useful genetics-based treatments and interventions that do not imply involuntary sterilization of people one group deems lesser.

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#126

Post by bonsai_spool »

dreamcompiler wrote: post #64
sheept wrote: post #61

Earlier quoted context omitted.

> the X chromosome has a mechanism to shut itself down (which makes sense; otherwise cells in women would have twice as many gene products from the X chromosome as cells from men). You can see this visually because not the same X chromosome is deactivated in all cells: it's what gives calico cats their color (almost all of them are female).

Human women have stripey skin too, but you can't see it under normal light because unlike cats, skin tone in humans is not controlled by the X chromosome. https://www.youtube.com/watch?v=BD6h-wDj7bw&t=225s

> Human women have stripey skin too, but you can't see it under normal light because unlike cats, skin tone in humans is not controlled by the X chromosome.

Humans have 'stripey' skin because of somatic mutations, and it's not clear that there are X-chromsome-located skin color loci. Don't believe everything you see on Youtube.

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#127

Post by Qem »

dpiers wrote: post #88
voidUpdate wrote: post #85

I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carers and the people around them. I can imagine that some people would have preferred it if they were able to "cure" it. I've often felt in the past that I would have preferred to have been born without autism and ADHD, and while I've been coping a little better w…

We already live in a world where parents decide whether or not a child with Down Syndrome will be born. 60-90% of prenatal diagnoses in the US result in an elective termination. The number is nearly 100% in Iceland and some other Nordic countries. Unlike autism or ADHD, we have a very clear understanding of exactly what causes Down Syndrome and now potentially how to correct it. A treatment like this is no different…

> it gives a baby a chance at normal, healthy development.

And a chance of not being killed in utero. Abortion for Down is sad, because despite cognitive impairment and health complications, their lifespans are long, and emotional development is quite spared by the syndrome. They can be very affectionate and sociable, despite the impairment. Abortion for them feels like death penalty for being dumb.

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#128

Post by api »

TeMPOraL wrote: post #125
voidUpdate wrote: post #85

I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carers and the people around them. I can imagine that some people would have preferred it if they were able to "cure" it. I've often felt in the past that I would have preferred to have been born without autism and ADHD, and while I've been coping a little better w…

> On the other hand, this feels a bit like eugenics, and a slippery slope towards designer babies where you can pick and choose their attributes. We can discuss pros and cons of freedom of choice of genetics for your children (an opposite spin on the same idea as calling it "designer babies"), but eugenics is a thought-terminating cliche at this point. There's whole space of useful genetics-based treatments and inter…

The best thing to do with the term eugenics is to define it specifically as authoritarian control of reproduction.

Voluntary acts aren’t eugenics, otherwise you get absurd things like free choice of mates being eugenics because you are choosing, or any medical treatment being eugenics if it touches genetics or reproduction. Eugenics should be defined as meaning only authoritarian (directly or via state backed “social engineering”) forms.

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#129

Post by api »

throwatdem12311 wrote: post #118
voidUpdate wrote: post #85

I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carers and the people around them. I can imagine that some people would have preferred it if they were able to "cure" it. I've often felt in the past that I would have preferred to have been born without autism and ADHD, and while I've been coping a little better w…

Natural Selection might as well be called Natural Eugenics. I have people in my family with Downs. It made the early pregnancies for every one of my children a terrifying ordeal. Luckily my children were all born perfectly healthy. I love my family members with it, but their lives have been so much more difficult than they needed to be. It’s not just massively difficult for the disabled, it financially ruined their p…

As I said in another comment, eugenics is state authoritarian control of reproduction and fertility (with the extreme version being genocide).

There are very few people with a disability who wouldn’t want it to have been prevented or cured. “A healthy man has many dreams. A sick man has only one.”

Re: CRISPR takes important step toward silencing Down syndrome’s extra chromosome

#130

Post by ben_w »

TeMPOraL wrote: post #125
voidUpdate wrote: post #85

I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carers and the people around them. I can imagine that some people would have preferred it if they were able to "cure" it. I've often felt in the past that I would have preferred to have been born without autism and ADHD, and while I've been coping a little better w…

> On the other hand, this feels a bit like eugenics, and a slippery slope towards designer babies where you can pick and choose their attributes. We can discuss pros and cons of freedom of choice of genetics for your children (an opposite spin on the same idea as calling it "designer babies"), but eugenics is a thought-terminating cliche at this point. There's whole space of useful genetics-based treatments and inter…

While I agree with you that it's a thought-terminating cliche, I would caution that humans have historically been very inaccurate with knowing what traits specifically are good vs. bad, while also very strong on enforcement of ingroup/outgroup and purity dynamics.

We could all be hyper-muscular (from that Myostatin gene) and have tetra-chromatic vision*, but that leads to the joke about how "in the future there will be three genders: kpop, furry, and tank", where kpop represents normative beauty standards, furry represents self-expression, and tank represents hyper-optimising for niche goals like being strong.

On the more near-term impacts, before we're ready for me to get turned into an anthro-wolf, if we all end up with our genomes subject to regular updates like our software currently is, some of us are inevitably going to face our cells getting bricked while we're still made of them.

* I don't know how that works so here's the wikipedia page: https://en.wikipedia.org/wiki/Tetrachromacy#Humans

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