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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

#181

Post by 123yawaworht456 »

dang wrote: post #174
123yawaworht456 wrote: post #40

Earlier quoted context omitted.

The heresy of heresies was common sense.

We've banned this account for using HN primarily for ideological battle. Regardless of ideology, that's not allowed here. It's not what this site is for, and destroys what it is for. https://news.ycombinator.com/newsguidelines.html p.s. This isn't a response to this particular comment, but to the account's overall pattern of behavior, which is way over the line.

I'll make another ¯\_(ツ)_/¯

yes, naturally, almost every post I make on my throwaways is something political, in response to existing political comments or submissions, which are evidently allowed.

using throwaways to protect oneself from the terminally online crowd is pretty much a necessity in the current year, unless your values and opinions are firmly in the middle of the Overton window. and even then, there are many opinions that were universally okay 15 years ago can be used against you now. I've seen it happen time and time again.

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

#182

Post by orbisvicis »

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?

> Why do you think people with Down syndrome can’t “achieve independence and a life of their own”?

Based on the anecdotes here. 5 in support, 3 against as of now. I wasn't expecting such a spread, so I did a bit of research. The cognitive problems, though possibly quite severe are not so as frequently as I had assumed. Whereas the medical complications tend to be commonly nasty. As for independence there's a lot of advocacy material claiming so, but reading between the lines and in conjunction with reddit and quota testimony, I suspect very few qualify.

> And what makes you think they, or their families, see their existence as suffering?

I'm sorry, what? Those with Down's Syndrome are people, with all the emotions and experiences that entails. If they are supported, nurtured and loved then they'll lead correspondingly happy lives.

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

#183

Post by pseudo0 »

smeej wrote: post #160
lurk2 wrote: post #139

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

> A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit Down syndrome organizations.

Definitely no sampling bias here... And given that the vast majority of people who do prenatal screening decide not to have a child with Down Syndrome, I don't think the people who choose to have a Down Syndrome child are really representative of prospective parents as a whole.

The revealed preference is clear, particularly in places like Iceland where prenatal screening is ubiquitous. They have effectively eradicated Down Syndrome going forward.

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

#184

Post by geysersam »

orbisvicis wrote: post #94
zarzavat wrote: post #83

Earlier quoted context omitted.

> Some bioethics experts are concerned I do have to wonder what goes on in the minds of these people. My sister-in-law has a child with Down's syndrome and the situation basically ruined her life. She can no longer work, so they now struggle on a single income, if her husband were to leave her she would be completely screwed. To what end is that in the continuance of ethics?

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…

I'm a bit torn on this. We're all dependent on other people one way or another. Individuals with Downs are more dependent, but it's a spectrum and they can still have meaningful lives. Meanwhile healty "independent" individuals can live entirely tragic and arguably pointless lives devoid of love and filled with anger.

That said, I'm still pro screening for Downs in fetuses. What I'm trying to say is that I'd do the screening for me as the parent. Not for the person to be born.

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

#185

Post by [deleted] »

lurk2 wrote: post #169
toomuchtodo wrote: post #158

Earlier quoted context omitted.

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 the…

[deleted]

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

#186

Post by suslik »

vtbassmatt wrote: post #123
shadowgovt wrote: post #105

Earlier quoted context omitted.

FWIW, since Down's is caused by (we're pretty sure) mitotic error, it can't be completely eliminated from the gene pool. 99% of cases did not occur on hereditary lines. With or without the existence of the treatment, Down's cases would continue to surface. So it's in the category of "treatments parents could choose to apply to their offspring," and generally parents get pretty broad leeway there in choice of the kind…

As the parent of a child with Down syndrome, I really appreciate the way you and the parent comment approached this topic. Thank you. Tiny nit, in the US it’s “Down syndrome”, not “Down’s”. Apparently we name conditions with a possessive if named for someone with it (“Lou Gehrig’s”) and without the possessive if named for, say, the person who first described the condition in a medical journal.

I don’t think this is true. Two counterexamples: Huntington didn’t have Huntington’s; Wilson didn’t have Wilson’s.

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

#187

Post by magicalhippo »

vtbassmatt wrote: post #143
devonbleak wrote: post #72

Earlier quoted context omitted.

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.

From this[1] list of associated complications one can read:

People with Down syndrome are much more likely to die from untreated and unmonitored infections than other people.

Children with Down syndrome are much more likely than other children to develop leukemia

Children with Down syndrome are more likely to have epilepsy [...] Almost half of people with Down syndrome who are older than age 50 have epilepsy.

And from this paper[2]:

Clinical research and longitudinal studies consistently estimate the lifetime risk of dementia in people with Down syndrome to be over 90%. Dementia is rare before the age of 40 years, but its incidence and prevalence exponentially increase thereafter, reaching 88–100% in persons with Down syndrome older than 65 years. [...] In a longitudinal study of adults with Down syndrome, dementia was the proximate cause of death in 70% of cases.

Saying they can have extreme health issues does not seem excessive given the above IMHO.

[1]: https://www.nichd.nih.gov/health/topics/down/conditioninfo/a...

[2]: https://pmc.ncbi.nlm.nih.gov/articles/PMC9387748/

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

#188

Post by margalabargala »

lurk2 wrote: post #169
toomuchtodo wrote: post #158

Earlier quoted context omitted.

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 the…

Yes, very similar to how in the decades after abortion was legalized nationally in the US, it gradually northern to our current state where it is legal to kill your own children any time before they turn 18.

Oh wait, no, that didn't happen, because in both your and my case it turns out humans are able to distinguish between life that is and life that might be. The "step" you mentioned is only a small one in a philosophical sense, enormous otherwise to the point of not being a concern.

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

#189

Post by gabaix »

llmthrow103 wrote: post #136
smeej wrote: post #127

Earlier quoted context omitted.

People in privileged or powerful positions often would.

People have an aversion to the word "eugenics" because it's often connected to atrocity propaganda from World War II. I'm not suggesting that every country should have genetic purity tests and policies on the level of Israel, just that we should understand that policies affect what kinds of people are more likely to be produced.

What policies post World War II have had eugenic effects on the population?

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

#190

Post by UltraSane »

smeej wrote: post #142
UltraSane wrote: post #30

Earlier quoted context omitted.

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.

Please provide evidence of your claim.
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