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ghurtado 2 days ago

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.

typewithrhythm 2 days ago | parent | next [-]

Seeing a minute fraction of their existence is a rubbish way to make a judgement.

Most of they bring to the world is random rage, unspeakable fluids, and unpleasant interactions.

But I guess driving past safari style is fine.

lurk2 2 days ago | parent | next [-]

Do you live or regularly interact with someone who has Down Syndrome, or have any kind of data that would support the idea that people with Down Syndrome are exceptionally violent?

Biganon 2 days ago | parent | prev | next [-]

What a terrible thing to say. You have a lot to learn about them.

smeej 2 days ago | parent | prev [-]

What? Are you talking about real, live people with Down Syndrome? Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else. That wouldn't make much sense if "most" of what they bring to the world is "unpleasant interactions."

inglor_cz 2 days ago | parent | next [-]

There must be some selection effect at work. "Those who live with them" are the ones who have chosen to live with them, which excludes:

a) all who have learnt about the situation before birth and chose abortion,

b) all who gave the kid away to some institution.

A N == 1 case from my life. My classmate had a Down kid at 20 - very rare, as Down is not typical in young mothers. She seems to be happy, even though she sacrificed her dream of a bigger family for him; it was so challenging having a Down kid that she didn't have any other.

But the father absconded and wants nothing to have with his disabled son.

smeej 2 days ago | parent [-]

Of course there is, but when the perspective being asked is, "What's it like to raise a child with DS?" the only people who validly have an opinion are parents of kids with DS.

A different N==1, a friend and coworker of mine had a son with DS at 23. He's now the oldest of six children. They're doing great, and he's a terrific big brother.

I think the studies matter because N needs to equal more than 1 to get a sense of how it goes for the people who do it.

SillyUsername 2 days ago | parent | prev | next [-]

Counterpoint. My youngest son has DS. He's an absolute nightmare sometimes.

Whereas some children might get into a mood and be ok after an hour, he does not unless his environment is changed.

He will literally scream or moan non stop for 6-8 hours (yes you read that right, and it's no exaggeration). He would do this when in environments he doesn't recognise, so imagine an airplane, imagine a restaurant, imagine a trip out...

We can't do those things anymore because of the actual judgement we get from other people (oh and I could write a post on this alone).

Then, when we return him to the car to drive home, his behaviour instantly turns to a smile and blowing raspberries.

We also can't get respite, our parents are too old, friends don't feel right babysitting, council services won't yet see him as old enough or have no availability, so it leaves us hiring privately, which is expensive, difficult and low availability.

Of course this takes its toll on our mental health, his sibling and us.

So on one hand I'm pleased it can soon be stopped for others, but on the other it makes up my son's behaviour, who I absolutely love regardless of the impact he has on us without realising, because there are times when you will see the stereotypical love and happiness when it is unexpected.

But I would not say I have greater happiness.

elp 2 days ago | parent [-]

I feel you.

I've got a 13 year old daughter with DS. We don't have 6 hours of screaming but she has definitely thrown her share of hissy fits. My personal favorite was driving into my son's snooty private boy's school while she was sitting in the back without a shirt on (She was 12 at the time).

Or the time she decided to sit down in the middle of a busy street while we were trying to cross it and we ended up dragging her across the road skinning her feet and almost getting hit by a truck.

Usually she is happy and has tons of personality but it really does make things harder at times.

I should probably add my that my usual comment when anyone asks is that having a kid with DS sucks but not as badly as a lot of other disabilities.

lurk2 2 days ago | parent | prev [-]

> 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?

smeej 2 days ago | parent [-]

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

pseudo0 2 days ago | parent | next [-]

> 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.

lurk2 2 days ago | parent | prev [-]

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

lincon127 2 days ago | parent | prev | next [-]

It is eugenics, I just don't see how that's a problem. Eugenics isn't inherently bad, you're just thinking of bad eugenics.

SilasX 2 days ago | parent | next [-]

Right, there’s eueugenics and dyseugenics.

2 days ago | parent [-]
[deleted]
RamblingCTO 2 days ago | parent | prev [-]

no slippery slope here, nope.

ben_w 2 days ago | parent [-]

Slippery slopes abound everywhere.

The fact that you'd be crushed at a depth of (IDK, 2km or so?) underwater doesn't make "swimming" unhealthy.

My concern with eugenics is that it's a thing which various groups of extremely narrow-minded bigots push for to promote mutually exclusive ideals, ideals which often have much the same level of biological awareness as an untrained idiot picking up a scuba kit and trying to walk from London to New York along the sea floor.

If we go slowly and carefully, if these treatments are optional and not mandatory, we might be able to build a better world without such self-righteous bigots. But this is definitely a case where we want to be slow, spreading this over multiple generations if we can, because we don't know the limits of our own ignorance.

RamblingCTO 2 days ago | parent [-]

> because we don't know the limits of our own ignorance

oh boy, would we fare better with a lot of stuff if we'd consider this before releasing shit into the wild (asbestos, ptfe, plastics, AI and so on).

stickfigure 2 days ago | parent | prev | next [-]

Don't worry, you can still add alcohol to the fetal growth stage to get Epsilons. No need to leave it to chance.

landl0rd 2 days ago | parent | prev | next [-]

If you marry someone to whom you’re attracted, check she’s mentally stable, reasonably healthy, aka reproductively fit, then you’re engaging in eugenics. Eradicating downs is eugenic. It’s also a good thing.

trhway 2 days ago | parent | prev | next [-]

Well, the test is simple - would you like to get Dawn chromosome yourself? Or may be have your children get it? I’m sure the answer is No.

jjj123 2 days ago | parent [-]

That is not a simple test. Ask any straight person if they’d want to turn gay, the vast majority would say no. My guess is they’d say no if you asked the same question about their children.

But I’m gay, and while there are pros and cons to it, I wouldn’t trade it for anything in the world. And I don’t think just because someone else doesn’t want to be me is a reasonable bar for eradication.

To be clear, I’m not saying the two are equivalent, just pointing out that you need a better argument than “you don’t want this for yourself or your children, right?”.

pseudo0 2 days ago | parent | next [-]

Would you want your children to be gay? As a straight person, given the choice I would want my children to be straight, so they could have biological children with their partner and a dating pool of ~48% of the population rather than ~2%. Those are pretty clear objective advantages, even putting aside the issue of societal acceptance.

It's completely understandable to have an attachment to one's own identity, but at a certain point trying to impose that identity on one's children becomes ethically questionable. A good example is the deaf community - would it be appropriate for a deaf couple to withhold medical treatment from their child that would allow them to hear? I would argue no, but some people disagree.

b3lvedere 2 days ago | parent | next [-]

"Would you want your children to be gay?"

It may be a corny answer, but i just would like to have them have a happy healthy life. So, i don't really mind or care if they'd be gay or not.

SarahC_ 2 days ago | parent | prev | next [-]

They could always foster some gay kids.... obviously being gay they won't be having gay kids via sex.

pseudo0 2 days ago | parent [-]

It's a hypothetical question... But plenty of gay people have children through surrogacy, or they adopt prior to determining the child's sexuality.

jjj123 2 days ago | parent | prev [-]

I wouldn’t want to impose that on my children either way. I’d prefer to let nature decide.

There’s no way in hell I’d want to select for straightness in my children. That is frankly insulting to me to even suggest.

potato3732842 2 days ago | parent | prev | next [-]

>That is not a simple test. Ask any straight person if they’d want to turn gay, the vast majority would say no. My guess is they’d say no if you asked the same question about their children.

The way you can wildly change the answer to this by changing the age, gender and marital status of the subgroup of straight people you ask is a lot more interesting than the answer itself is.

SilasX 2 days ago | parent | prev | next [-]

Gideon’s Crossing:

“[A cochlear implant for my kid?] You think hearing people are better than deaf people?”

‘I’m saying it’s easier.’

“Would your life be easier if you were white?”

trhway 2 days ago | parent | prev [-]

>But I’m gay, and while there are pros and cons to it, I wouldn’t trade it for anything in the world.

Having Dawn syndrome is severe impairment.

Being gay isn't an impairment. At least nowadays in US. I'm not sure you would feel the same if you were gay in Chechnja ... where supposedly gays just don't exist, and when something like gay happens the family deals with him themselves (the rule there - either the family deals with their own member, or the society will deal with the whole family). Especially if it were about your children.

jjj123 2 days ago | parent [-]

My comment makes it clear I’m not comparing the two, I’m just saying it’s not a good argument as it does not hold for other cases.

trhway a day ago | parent [-]

>I’m just saying it’s not a good argument as it does not hold for other cases.

No. It does hold for other cases where severe impairment is present.

>My comment makes it clear I’m not comparing the two

exactly. Because your case doesn't contain severe impairment. When such an impairment is added - like say making you a father of a gay child in Chechnja where you have to commit a "honor killing" of that child to save the rest of your family - the cases become much more comparable. I'm pretty sure that in Chechnja you'd choose DNA edit to remove gay gene from your child if you're given that choice.

shadowgovt 2 days ago | parent | prev | next [-]

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 of offspring they're aiming for (starting with dating the guy with pretty eyes or the girl with the cute hair thing).

... Whether society is mature enough to recognize that in the presence of that treatment, Down's people will still be born and they have every bit the same dignity-of-human-life as the rest of us is a very important question.

vtbassmatt 2 days ago | parent | next [-]

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.

suslik 2 days ago | parent | next [-]

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

vtbassmatt 2 days ago | parent [-]

I had to look both of those up, and you’re right. The rule is inconsistently applied for sure. This got me curious about where the so-called rule came from. Wikipedia says:

> Auto-eponyms may use either the possessive or non-possessive form, with the preference to use the non-possessive form for a disease named for a physician or health care professional who first described it and the possessive form in cases of a disease named for a patient (commonly, but not always, the first patient) in whom the particular disease was identified.

https://en.wikipedia.org/wiki/List_of_eponymous_diseases#Aut...

This is sourced by a link to the American Association of Medical Transcriptionists, which is not a body I’d heard of but I guess have some skin in the game when it comes to the intersection of medicine and grammar. https://www.mtstars.com/word-For-eponyms-AAMT-advocates-drop...

twixfel 2 days ago | parent | prev | next [-]

In the UK for example we don’t go for this performative anti-apostropheism that Americans are so fond of. So it really depends on where you’re from.

vtbassmatt 2 days ago | parent [-]

“Performative” feels a bit judgmental, given that America/UK differences in orthography are common. But yeah, y’all spell it differently than we do. I think you might also capitalize the “s” in syndrome?

ksenzee 2 days ago | parent | prev | next [-]

I never knew why the possessive wasn't used, thank you!

shadowgovt 2 days ago | parent | prev [-]

Thank you! I will keep that in mind.

allthedatas 2 days ago | parent | prev [-]

[dead]

6502nerdface 2 days ago | parent | prev | next [-]

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.

iLoveOncall 2 days ago | parent | prev | next [-]

I don't see how it is ethical AT ALL to let new children have Down syndrome when we have the ability to eliminate the gene.

If Nazis hadn't practiced eugenics it wouldn't have been shuned as it is today.

There's nothing wrong with eugenics in itself, just with how it's applied.

user____name 2 days ago | parent | next [-]

The social effects at scale are what bothers me. Just wait a century until employers put "no genetic defects" in their job applications. Or parents who decide to have old fashioned non-designer babies have trouble getting their kids insured. Or homophobia will become normalized again because "they should have fixed it in the womb". Is this a sufficient reason to not prevent genetic defects? Who can say.

csin a day ago | parent [-]

This was the premises for the movie Gattaca (1997). One of my favorite movies as a kid.

HPsquared 2 days ago | parent | prev | next [-]

It's one thing for the parents to decide, quite another for a bunch of politicians to decide who gets to be born.

iLoveOncall 2 days ago | parent [-]

This research is about removing the extra chromosome, so having the same child be born without the disease, not about aborting the child...

pfortuny 2 days ago | parent | prev [-]

So there is a moral imperative to abort fetuses with Down's syndrome?

Wow, that is certainly difficult to explain.

Now abortion has become a moral imperative in some cases...

iLoveOncall 2 days ago | parent [-]

The article is literally about removing the extra chromosome and not aborting the fetuses...

But yes, I do actually think there is a moral imperative to abort fetuses with diseases that will extremely negatively impact the life of the person and of the people who will have to care for them.

That doesn't mean we shouldn't care for them if they happen to be born, not at all, but I don't really understand how it can be controversial otherwise.

b3lvedere 2 days ago | parent | prev | next [-]

Isn't all life just trying to survive, adapt and overcome?

vicnov 2 days ago | parent | prev [-]

> just how ethical it is to completely eliminate Down's from the gene pool

wait.. what?