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by fabbbbb 5 days ago
It reads like a specific genome would lead to deterministic outcomes. It does not. Life is messy.

Most Down Syndrome people have happy lives, some can even live alone and have an independent daily live.

Life expectancy is up to 60 years.

Yet in Iceland „Democratization“ of genetic diagnosis lead to basically 0% Down Syndrome kids (births).

Where does this stop? What with someone of a genetic indication of aggressive cancer- life expectancy 55? Abort?

The same (detectable) genetic mutation leads to vastly different lives. This is correlation. Nobody sees the many undiagnosed broken genomes with no visible symptoms that would be aborted with more such businesses like this.

8 comments

People born with Down syndrome deserve all the respect and dignity any other person does.

I have two kids. If I could have chosen whether or not they would be born with Down syndrome I would choose would “without” every single time. If either of them were born with it I would love them the same but I would never choose it, if I had the choice to make.

The point the OP is making is that given the choice parents will always choose a 100% 'perfect' child who will live a happy and long life free from things that make it difficult. Until relatively recently this hasn't actually been a choice though - as much as you'd like that, you've not been about to tell much about the long term future of a foetus so you got what Mother Nature blessed you with.

Increasingly though, parents can check, and they are doing, and that means they're getting to pick whether or not to carry a not-quite-perfect baby to term. Many are choosing to terminate and try again. Right now it's for obvious things like Downs, but the scope for what parents choose to terminate can, and probably will, escalate to other detectable problems.

The question is where that ends. Terminating due to a susceptibility to aggressive cancer? Maybe. Due to lower intelligence? Perhaps. Lower physical strength? Probability of autism? Unsymmetrical facial features (e.g. 'ugliness')?

>The question is where that ends. Terminating due to a susceptibility to aggressive cancer? Maybe. Due to lower intelligence? Perhaps. Lower physical strength? Probability of autism? Unsymmetrical facial features (e.g. 'ugliness')?

Why/how a pregnancy started (consensually or not for example) or the motivation behind making that choice (just don't want a kid, some genetic diagnosis, etc) are irrelevant. If abortion is bad, it shouldn't be done at all. If it's not bad the reasons behind it should not matter

Always breaks my brain when people argue abortions in case of rape or incest are OK but otherwise a woman should be forced to carry a pregnancy to term, as if it matters to the potential child in the end. Either you're killing a person or not. I'm pro-choice, so it's my opinion that you're not, but the wishy-washy middle ground position is untenable to me.

I am pro-choice, but really I'm hoping there is enough advancement in medicine to "fix" genetic issues and the sorts of things people would terminate after a positive test result.

If that is actually possible someday, legitimately, I am switching to pro-life.

With only rape/incest or mother's certain death as reasons for termination.

I realise this is a weird and nuanced take, but I was adopted and it was back when they forced the mother to keep the kid for 6 months before they'd place tbe kid. Puritanical nonsense?

Make it so accidental pregnancy is 0.0001% (a thousand times less likely than perfect condom and pill/IUD use;) and the above "can fix", and what reason would there be to terminate?

I am anti-death penalty too.

If you feel that abortion is killing an otherwise viable human being, then you should be pro-life now. Especially if you're anti-death penalty and feel that no one should die for any reason. On the other hand if there are any reasons why abortion would be ok, why aren't all reasons ok? Either it's wrong or it's not, and if you are on the pro-life side why should a child be punished because of how it was conceived? On the other hand, if you believe that a non-viable fetus is not a live human being, the decision to stop before it gets to that point is independent of any reasoning

Having conditions on abortion are completely nonsensical and irrational. I don't get it

Well the reasons for a choice do matter, don’t they? They matter in today’s law in many places.

Is aborting because of an LLM „likelihood“ of some genetic issue (that might lead or not lead to an short or unhappy life) the same as aborting after rape for you?

Biggest problem in fact is that people take genetic markers as deterministic and assume the worst outcome. Lots of false abortions happen. That does not happen with rape.

>Is aborting because of an LLM „likelihood“ of some genetic issue (that might lead or not lead to an short or unhappy life) the same as aborting after rape for you?

Yes. Because if you think it's wrong to end a pregnancy, what does it matter how it started or why you want to end it? The rationale behind being "pro-life" is that you feel abortion is killing a child. I happen to believe that a non-viable fetus is not a child, so I am supportive of a woman's right to manage her reproductive system as she so chooses, and therefore it doesn't matter why a woman wants to end a pregnancy--from rape or incest, doesn't want to have a child right now, doesn't want a child with a genetic deformity, or doesn't want a child with blonde hair--it doesn't matter.

On the other hand, if you felt that it was "murder" why would there be any reason good enough to justify murder? The only justifiable reason to kill another human being is in self-defense. A woman who was raped won't be "un-raped" because she is no longer carrying the baby. That sounds harsh, but of course I think it is BS because the whole anti-abortion argument is largely BS.

Neither the OP nor you give a reason for why that's bad. I want my child to have all possible advantages in life. I'm sure most people want that. Why shouldn't we select for that? I'm interested in hearing an argument that doesn't go into anti-abortion territory.
It's an anti-reproductive rights argument. You have to first accept the premise that a fetus is a person. Once you've done that, then the premise that a fetus is a person seems obvious.
There are a few reasons why it could be bad:

Access to the tech is probably unequal if it's done privately, which leads to polarization of society where rich people get even more opportunities than poor people. If you want equality of opportunity and an approximately meritocratic society then building a system to prejudice outcomes before kids are even born isn't ideal (although money and education already does this to an extent, those can be countered a bit by government policy; literally growing humans with genetic advantages can't.)

There's a world of potential for choosing foetuses based on criteria that are ethically catastrophic (no girls, no people who are 'impure', etc). You can argue that it's still parental choice even if the parents are terrible people, but normalizing the tech could be a disaster if a future fascist government gets into power. Imagine if the choice was removed from the parents and taken over by the state.

The foetus doesn't get a choice. This is straying very close to anti-abortion rhetoric admittedly, but if you believe that people should get a say in the outcome of their life, then aborting pregnancies based on a possible outcome that might not manifest for decades is very questionable. A baby that gets terminated because current medicine can't stop an aggressive cancer is having the opportunity to wait for medicine to improve taken away from them. Even ignoring the abortion side of things, you can question whether it's right to make that decision on their behalf.

Given the amount of love, energy, and attention it takes to raise a kid, I don't see why I should care how selective somebody else wants to be.
This sort of thinking is incredibly dangerous to society at large, to say nothing of the danger to your own heart and soul.

Character, beauty, love, sacrifice. Every one of these involves pain and it makes life worth living. You can't avoid pain, so you might as well engage it in service of those you hold dear.

You should very much care about society wielding a sword like this, because historically we do not wield it well.

There really is no point in leaning into avoidable pain. Pain does not "make you stronger". Pain is not "beauty". These are all bullshit tropes invented by abusers to keep people from questioning things.
I agree with you, unnecessary pain is not virtue. But pain does indeed make you stronger, or it can make you bitter, or depressed, or insane. How you choose to work through the inevitable pain you will face is what determines if it makes you stronger or not.

It's easy to hand wave the question of pain away, but much wiser men than you and I have arrived at very different conclusions than you suggest.

The sword being just deciding which embryos you will raise?

It's very easy to demand or promote sacrifices you expect other people to make. But I don't find that to be very empathetic.

I've already seen how society is when we shame and hand-wring about the personal decisions others make, and it's not one I want for my kids. At some point you need to be satisfied with your own decisions and then let other people make theirs.

I reject the premise of "live and let live" whereby no one is allowed to suggest I live a better life nor am I allowed to suggest they improve theirs.

I can be both satisfied with my decisions and still wish better for my neighbor; these are not mutually exclusive.

I am not saying, don't choose between embryos. I'm saying, be careful because it's a slippery slope and not a slide you want to ride.

Is there such choice? Today parents are not doing that choice but choosing to stop the life of the kid with Down-Syndrome. So I’m not sure they are receiving „all the respect“ today - are they?
Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death.

My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting.

This is why most people abort Down fetuses.

Does this make sense to you and her? Does she wish the kid would not have been born?
She is the sort of very optimistic and energetic person that she does not mind most of the time. But she is a bit sad about her decision not to have any other children - her first kid was just too much to handle, and she wouldn't be able to take care of another one, even if healthy.

This is also a hidden cost of having a Down's baby - given how exhausting the care is, other kids either get less attention, or don't get born at all.

Also, the father skedaddled. Allegedly this happens quite often with unhealthy kids...

I knew people who had to take care of their children for their entire life, since they never grew up mentally above 6-years old kid.

Answer I heard is hushed "Yes".

Are you willing to deny her also the right to that thought?

I'm not in favor of eugenics but you started from there and now you are sounding "pro-life" each time more as you write more messages in the thread.

Such an inconsiderate and loaded question.

Screening an embryo that could not survive outside the womb and deciding to stop the pregnancy based on the results is not the same as "wishing the kid wasn't born".

What are you talking about? Down Syndrom LE is 60 years.
And in some cases that means 60 years of support that needs to be provided. I can understand why some people would not choose that.
I'm sure she wishes her child had not been born with a debilitating disorder which usually requires a lifetime of care and comes with major health issues and suffering.
In my country people with Down syndrome often live in housing together in suburban areas, with a social worker keeping an eye on things (independent living) or a carer available 24/7. They do sports, catch the bus, go to neighbourhood bbqs etc.

Your depiction of a person with downs is not representative of the majority.

I think yours is not representative of the majority. Most places in the world can't afford dedicated carers, dedicated villages and housing, dedicated services, etc. [66-70% of Down's syndrome sufferers cannot live independently.](https://www.dscba.org/files/content/DS_functional_milestones...) Further, [11% cannot feed themselves, 26% cannot dress themselves, 29% cannot use the toilet themselves, and 52-54% cannot shower or bathe themselves.](https://www.mdpi.com/2076-3425/11/8/1012)

It gets worse. People with Down’s syndrome face all kinds of health issues. *Half* are born with heart defects. They have higher risk of hearing loss, vision problems, sleep apnoea, thyroid disease, coeliac disease, digestive problems, epilepsy, infections and leukaemia. They also have elevated risk of dementia later in life.

This is a hellish existence which no one would wish on their worst enemy. It's hell for the sufferers and it's hell for the family.

I’m fairly certain your depiction is not representative of the majority experience throughout the world.

I can’t say for 100% certain but I struggle to believe what you’re describing is more common than not. That strikes me as a level of support provided by the state that most people with ds - and their family - do not enjoy throughout the world.

> I can’t say for 100% certain but I struggle to believe what you’re describing is more common than not.

This is absolutely common in New Zealand.

I think treating people with dignity, respect and part of the community is as important as state financial support.

Our government will also subsidise wages in certain industries for people with certain disabilities. So it’s common for people with intellectual disabilities to be working at supermarkets.

Never questioned if it was common in New Zealand. I’m sure some countries have great support, and others do not. But in the aggregate, most people in the world simply do not have that level of support. So the conversation needs to be calibrated with that in mind.

Remember the original context here: someone talked about what they experienced and then you came in questioning it saying how wonderful the support you see is, then said what they experienced is not the majority experience, when the reality is quite the opposite actually. The support you are seeing is what is actually uncommon worldwide. New Zealand is exceptional here.

New Zealand, probably among the bottom half of countries based on population, so quite likely what you’re describing is not the majority experience. It’s probably rather rare worldwide.
I am not an expert on Downs kids to know how majority looks like (are you?) Here in CZ, I knew of one preCovid cafe that employed adult Downs as waiters, and they absolutely needed supervision most of the time - cannot take the complicated Prague public transport alone. Maybe it is different in rural settings where there is just one bus line that never changes its course.

That said, prospective parents usually don't make their decisions to abort or not to abort on an expected median outcome, but some of the more pessimistic-but-realistic scenarios.

> In my country > Your depiction of a person with downs is not representative of the majority.

It may be for a different country, both experiences are valid to hear. In my country as far as I know it doesn't happen like yours.

With pre-implantation genetic testing, a sufficiently large number of embryos, and a sufficiently small number of children desired, it's just a ranking question. A pair of parents with 6 embryos, and 2-3 children desired will likely just try their most viable embryos first. One can argue that they should try the embryos that carry known conditions before they try the ones that don't, but I can't imagine under what ethical structure that is desirable.

As for trisomy-21, if we wish to increase the rates in the future we can stop performing pre-implantation testing and the MSAFP and nuchal translucency and so on. After all, even if we abort all embryos that carry the markers today, new such embryos will be formed in the future since it comes from non-disjunction so selection pressure once removed will allow it to return.

I would not bring a child into this world knowing they would die an early, painful death, at best leaving behind a family and children of their own without a parent themselves.

Potential people aren't actual people though either.

It's not fair to people with Down Syndrome to romanticize and downplay their suffering. They all have to suffer with a strong disease their whole lives. Many are much to sick to part of "normal life" and we never see the really sick ones in public. We really only see the few one's that are doing exceptionally well. The rest are institutionalized. Many still die young. Many require invasive surgeries during early childhood.
The toll it takes on parents and siblings, based on stories one reads, must be horrible.

You destroy the life of the family and greatly make the lives of healthy children harder.

Why would you sacrifice your healthy children for one who has no real future?

Complete inversion of common sense.

"has no real future"?

I.e. not a net-productive member of society? Fun fact, machines are taking everything over, so you and any "healthy children" may be in that same camp very soon. IMO, anyone capable of living happily while being outcompeted by machines is well-adapted for the future.

I'm not; average Down's Syndrome folks seem to be.

> anyone capable of living happily while being outcompeted by machines is well-adapted for the future.

> I'm not

Why not?

> lead to basically 0% Down Syndrome

Oh, the horror.

Listen, you have no idea what these people went through and judging them for not wanting to go through the same thing is shitty.

The future is with gene editing to fix invalid genetic code. However, the owners of good genes probably won't give them away for free so it would be available only to the riches.
How are they going to prevent stealing of genetic code? With copyright? See how that went with AI.
This is why you should never consent to DNA collection because they will just keep it and sell it later without paying you a cent.
You know what? Good. If there is something good in it they can have it. Probably not a whole lot in my case, but still, if this enables people to have better lives, let them go at it!
It's not good. They can sell it to insurance companies as well. Who might decide not to provide you with health insurance based on your genetic profile.
Yes, I agree that is not good. But that is a thing the people need to fight politically for to not be allowed. My main gripe is that OP's post sounded like screw the people who's lives that would improve because I wouldn't get paid for it.