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When they warn of rare disorders, these prenatal tests are usually wrong

nytimes.com

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Re: When they warn of rare disorders, these prenatal tests are usually wrong

#111

Post by BoorishBears »

kryogen1c wrote: post #90
tmnstr85 wrote: post #89

Earlier quoted context omitted.

Quoted post unavailable.

you should probably step back and take a breather. youre emotionally involved in a matter with your kid(s) - as one should be - but thats not the way to have a public discourse.

The reply is pretty tasteless. Especially:

> Suggesting you should have aborted the 20-week fetus based on unusual skull appearance? Suggesting that the meningitis was a result of some malpractice?

Don't ask people sarcastic questions on a subject like this. You wouldn't do it in real life would you? It's a real person who just shared a harrowing experience with a child, not talking about the latest "Rust framework for DeFi Widget Spinning".

Common sense and basic social skills would tell anyone this was someone talking about a related experience with thier child, not a calculated rebuttal meant to talk to some exactly overlapping point presented in the article.

Honestly the exchange captures the core of HN: You can be as nasty as you want as long as you're not direct about it.

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#112

Post by rayiner »

honkycat wrote: post #106
tagoregrtst wrote: post #96

Earlier quoted context omitted.

The alternative is loving a human being and playing the cards you’re dealt

No. I think this is a cruel and ignorant thing to say. Wanting to have a child who is not special needs is not an evil thing. Choosing to not bring a a child with special needs to term is not evil. Having a special needs child can dominate your finances, your life, and the lives of your family members and already existing children. People have a right to choose what what they want out of life, especially in the conte…

Why stop there? It can be a challenge to have a kid who is ADHD, or is susceptible to depression or mental illness, or a different sexual orientation, etc. It’s not wrong to abort those children either, right?

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#113

Post by smt88 »

rayiner wrote: post #112
honkycat wrote: post #106

Earlier quoted context omitted.

No. I think this is a cruel and ignorant thing to say. Wanting to have a child who is not special needs is not an evil thing. Choosing to not bring a a child with special needs to term is not evil. Having a special needs child can dominate your finances, your life, and the lives of your family members and already existing children. People have a right to choose what what they want out of life, especially in the conte…

Why stop there? It can be a challenge to have a kid who is ADHD, or is susceptible to depression or mental illness, or a different sexual orientation, etc. It’s not wrong to abort those children either, right?

As someone who has all of those in my family, none involve having a lifetime dependent.

Most people don't want to die and leave behind someone who can't care for themselves.

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#114

Post by rayiner »

Medical professionals are often shockingly bad at statistics. My wife and I were talking about birth control to an RN* after our first child was born. The RN mentioned cooper IUDs were 95% effective. He asked what timeframe that was measured over and she couldn’t answer. Not only did she not know, but she couldn’t even understand why we were asking the question.

*) My wife insists that it was a doctor, not an RN, but my brain won’t let me process that possibility.

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#115

Post by xyzzy_plugh »

rayiner wrote: post #112
honkycat wrote: post #106

Earlier quoted context omitted.

No. I think this is a cruel and ignorant thing to say. Wanting to have a child who is not special needs is not an evil thing. Choosing to not bring a a child with special needs to term is not evil. Having a special needs child can dominate your finances, your life, and the lives of your family members and already existing children. People have a right to choose what what they want out of life, especially in the conte…

Why stop there? It can be a challenge to have a kid who is ADHD, or is susceptible to depression or mental illness, or a different sexual orientation, etc. It’s not wrong to abort those children either, right?

For one, we don't have a good enough understanding of those things to be able to test adults definitively, so it's a moot point.

That being said, if there was a test for ADHD and I knew what the odds were that my child would have ADHD, as someone with ADHD I would seriously consider whether or not I wanted to have kids or subject another human to that.

So, I don't think it's necessarily wrong, in some universe, but there's a line between adversities for which you can still overcome and thrive (the ones you listed) versus the sorts of things prenatal tests check for where, if they do have these conditions they are either dead on arrival, dead soon after, will wish they were dead for most of their lives, or at the very least will never be a contributing member of society.

I don't think the comparison you draw is fair.

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#116

Post by bdowling »

jandrese wrote: post #110
bdowling wrote: post #103

Earlier quoted context omitted.

Depending on what state/country you live in, care for a disabled citizen may be partly or wholly paid for by the state. The parents may also be able to become qualified caregivers, in which case they can be paid to take care of the child.

It's still a full time job that precludes you from doing a great many normal family activities for the child's entire lifetime. There is also the danger that your state may elect budget hawks who decide to cut funding for the programs halfway through your child's life, leaving you on the hook for ruinous medical expenses. It can also be very unfair to your other children who are going to basically lose out on activit…

I agree completely about all of the challenges, hardships, lost opportunities, and unfairness. It is an awful situation to be in for everyone involved and no amount of money in the world could ever make up for that.

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#117

Post by titanomachy »

xyzzy_plugh wrote: post #115
rayiner wrote: post #112

Earlier quoted context omitted.

Why stop there? It can be a challenge to have a kid who is ADHD, or is susceptible to depression or mental illness, or a different sexual orientation, etc. It’s not wrong to abort those children either, right?

For one, we don't have a good enough understanding of those things to be able to test adults definitively, so it's a moot point. That being said, if there was a test for ADHD and I knew what the odds were that my child would have ADHD, as someone with ADHD I would seriously consider whether or not I wanted to have kids or subject another human to that. So, I don't think it's necessarily wrong, in some universe, but t…

I don’t think we understand these subtle mental disorders well enough for this kind of absolute decision-making. What is ADHD, really?

“Your child has an extra chromosome and will probably never live independently” feels deeply different than “your child has a gene variant that subtly affects their brain in ways that make it harder to focus in certain circumstances, and also probably in dozens of other ways that we don’t understand, and also many very successful people have this variant and it’s possible it even contributed to their success”. A society that routinely aborts children in the second case is starting to tilt into wild dystopia.

Not that we’ve identified such a gene, as far as I know.

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#118

Post by Apes »

tagoregrtst wrote: post #96
XorNot wrote: post #85

Earlier quoted context omitted.

"it worked out fine for me" is not particularly reassuring when the alternative is a lifetime of medical bills and possibly a permanent dependent.

The alternative is loving a human being and playing the cards you’re dealt

It's fine for you to live in whatever fantasy world that allows you to never have to make any hard life choices, but you shouldn't go out of your way to try to make others feel guilty for having the unfortunate fate of having to live in the real world.

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#119

Post by SkittyDog »

rayiner wrote: post #112
honkycat wrote: post #106

Earlier quoted context omitted.

No. I think this is a cruel and ignorant thing to say. Wanting to have a child who is not special needs is not an evil thing. Choosing to not bring a a child with special needs to term is not evil. Having a special needs child can dominate your finances, your life, and the lives of your family members and already existing children. People have a right to choose what what they want out of life, especially in the conte…

Why stop there? It can be a challenge to have a kid who is ADHD, or is susceptible to depression or mental illness, or a different sexual orientation, etc. It’s not wrong to abort those children either, right?

Wait, are you objecting to the abortion specifically? Or does it just bother you that people could have a conscious influence on the kind of children they do/don't get?

If this is just a coded abortion debate... Count me out

But if it's the latter... Parents have been "selecting" children of the "right" race, eye color, height, etc for millenia... It's called "being attracted to certain physical characteristics over others" and it's really quite pedestrian.

ADHD, depression, and schizophrenia all appear to have a strong genetic component. I think most people would definitely weigh the knowledge of their partner's family's mental health history when they decide who to have children with.

I mean, don't you think people should have the moral right to select their own mates, free from coercion? I think most people would consider that to be an absolute human right, and anything less would be morally condoning rape.

Re: When they warn of rare disorders, these prenatal tests are usually wrong

#120

Post by [deleted] »

rayiner wrote: post #112
honkycat wrote: post #106

Earlier quoted context omitted.

No. I think this is a cruel and ignorant thing to say. Wanting to have a child who is not special needs is not an evil thing. Choosing to not bring a a child with special needs to term is not evil. Having a special needs child can dominate your finances, your life, and the lives of your family members and already existing children. People have a right to choose what what they want out of life, especially in the conte…

Why stop there? It can be a challenge to have a kid who is ADHD, or is susceptible to depression or mental illness, or a different sexual orientation, etc. It’s not wrong to abort those children either, right?

[deleted]
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