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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

#131

Post by watwut »

lelanthran wrote: post #123
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?

> 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? But we don't stop there. The bar is considerably lower than "the kid might have problems". The mother, exclusively, can decide whether or not she wants to proceed with the pregnancy through to birth, and she…

This is not true in every state. Abortion is in the process of being outlawed in United States. Texas outlawed it. Supreme court is hostile to it for religious reasons.

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

#132

Post by halpert »

teruakohatu wrote: post #97
midjji wrote: post #70

Earlier quoted context omitted.

If you get a positive for a horrid cancer with a 90 percent false positives you should be afraid. Its lunacy for tests to be regulated beyond requiring rough false positive false negative rates, and if anything smacks of "I dont understand statistics and therefore have to protect my children from understanding statistics." The article is most likely written by some anti abortion idiot.

> if you get a positive for a horrid cancer with a 90 percent false positives you should be afraid. No you should not panic, anymore than you should celebrate and buy a yatch if you think you have 10% chance of winning a lottery. The doctor should phrase it as "the test indicates you have a 10% possibility of cancer. The majority of people who test positive do not have cancer. Further testing is required to confirm o…

The GP wasn’t saying go out and kill yourself because you are definitely condemned. They were highlighting that you still have an extremely elevated chance of having cancer. If you got into your car and found out you had a 10% chance of being in a fatal accident, would you not worry? Sure, there is a 90% probability you’ll be fine, but the probability for most other people is 99.999%. Pretending like there isn’t a potential issue is dangerous and willful ignorance.

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

#133

Post by lelanthran »

Broken_Hippo wrote: post #130
lelanthran wrote: post #123

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? But we don't stop there. The bar is considerably lower than "the kid might have problems". The mother, exclusively, can decide whether or not she wants to proceed with the pregnancy through to birth, and she…

To be fair, the pregnant woman isn't a mother yet - unless she has other children. She's deciding whether or not she wants to (or can!) cope with pregnancy and the hardships involved. She's deciding whether or not to become a mother or bring another child into the world. And yeah, it can look like "I don't feel like it" to a casual observer, but then again, it really isn't the casual observer's business. They won't k…

> And yeah, it can look like "I don't feel like it" to a casual observer,

I think you misread my argument: if the bar is currently at "I don't feel like it" for abortions, then judging someone as morally or ethically "wrong" (or evil) for a higher bar is silly.

[EDIT: I'm not making any judgement on a pro-choice position, nor am I attempting to trivialise the complex and often traumatising decision-making involved in abortions. I'm simply saying that if we accept "I don't need to give any reasons" then we shouldn't judge the people who give medical reasons]

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

#134

Post by BoorishBears »

jacobolus wrote: post #124
BoorishBears wrote: post #111

Earlier quoted context omitted.

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 f…

I am not asking sarcastic questions, and my comment is not intended as any kind of attack. Please read my tone as 100% earnest, just confused. And I hope the top poster will accept my apology that I didn’t phrase my comment to make that clear enough. The tone of voice in the top-level comment reads to me as extremely aggressive/aggrieved, like they had been personally wronged by someone (not just a victim of a tragic…

The entire comment you've written seems hellbent on attributing this person's anger to some specific entity... did you take 5 seconds to ask yourself what the goal of that is? Is the goal to find out what they're angry at so you can invalidate their pain over (what you seem to understand is) a terrible situation?

"Oh you're angry at the doctors? Well doctors can't read the future."

"Oh you're angry at the tests? Well the tests are perfect."

I mean, I don't know why I'm asking when it's exactly what your first comment tried to do. And for obvious reasons they didn't appreciate it... after all what does it add?

-

You think this person doesn't know tests are imperfect?

You think they don't know what false positives and false negatives are?

Or you think they know and it's still a terrible situation, and any article about the inaccuracy prenatal tests would have reminded them of their traumatic experience that at least somewhat involved the inaccuracy prenatal tests, even if the inaccuracies involved are not exactly the same

-

And I mean, let's consider hypothetically they don't know for a second! Or let's say your goal was for the benefit of another reader. You're going to be the one to inform them of these things and then... ???

I mean seriously, someone reads an article that causes them to recall their child's birth which they described as a living hell. I think it's safe to say:

a) the point was not asking HN strangers to tell them why they're upset with the wrong thing

b) they likely understood their situation was not 1-1 with the article's situation

c) they commented anyways because they were venting. And not an off-topic venting anyways, they didn't say "I hate prenatal tests that are false negative" they showed hatred for inaccurate prenatal tests which doesn't prescribe a direction and is pretty fair???

-

And yes I get HN's love this place to be as sterile as an OR, but it's not every day we get an article that has this level of personal implication, so what exactly does anyone lose just letting this person vent without trying to police their emotions or "correct" their anger?

If this was a website about prenatal care it'd be one thing, but posts about prenatal care make up: 0.0024% of all posts on this website. 47 mentions out of over 1 million stories.

Honestly I'm shocked this even needs to be said though. This is all covered under basic social skills, but then again maybe I'm being inconsiderate of the fact that certain personal situations can affect the ability to pick up on non-verbal cues and implicit social expectations

To that end, in the future: Never, ever, ask someone if they wish they had aborted a child they had.

(And before you rush to say you didn't, don't even ask it implicitly.)

If they feel the need to share an opinion on that they will. It's certainly not for you to ask, and even less so for you to ask an internet stranger.

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

#135

Post by sundvor »

CorrectHorseBat wrote: post #82
tinbad wrote: post #64

Earlier quoted context omitted.

Having gone through two twin pregnancies (where the odds of these tests being correct are especially low) we declined all of them. Anecdotally, I know of several parents who had a positive test for genetic disorder, went ahead with the pregnancy anyway and children were perfectly healthy. Until these tests are close to 100% reliable I don’t see the point.

The point is that it is a screening test. A positive test will be followed by a more invasive test that has a lower false positive rate.

"The good news is that the invasive test proved the screener was incorrect. The bad news is that it looks like you've now lost your baby. It was fine though!".

The risks associated with this extended testing are just not worth it, perhaps aside from Down's (from a numbers point of view). Even then, there are many completely gorgeous children and people with Down's .. chances are you'll have a curveball in life one way or another at any rate.

I have two children, one diagnosed with ADHD/ASD, the other likely not too different but too early to tell. Apple doesn't fall too far from the tree. Wouldn't change a thing, other than to avoid the ABA services companies like plague - they prey on your insecurities and you might face financial ruin for possibly no real benefit to the child if you go along with their spiels.

So, to see medical companies exploiting vulnerable new parents who will do anything for their children? I am shocked. (/S...)

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

#136

Post by BoorishBears »

burnished wrote: post #127
BoorishBears wrote: post #111

Earlier quoted context omitted.

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 f…

Disagree. I don't get your reading from it and frankly I read the above comment and also did not understand what they had intended to communicate due to seeming contradictions. I had the same questions.

My reading was being charitable, but I was corrected by the follow up.

I wanted to believe this person understood the top level comment was venting and asked anyways (implying sarcasm) because that seems like a pretty basic inference from most people's social experiences.

But instead they clarified they (and I guess you as well) truly do not realize that the top level comment is upset because prenatal tests were part of a traumatic event.

You apparently did not realize the top level comment is not conflating a false positive and a false negative, or solely blaming prenatal tests, but rather they're saying all forms of inaccuracy in a prenatal test have great potential to cause heartbreak... which is 100% true.

tl;dr: Their comment is venting about something unimaginably painful while staying on topic and closing with a relevant statement, so I REALLY don't get what the point of drilling into the more personal part of it buys you?

_

I also assumed you and the other reply did not un-sarcastically try to ask a stranger if they regret not aborting their child so casually. But again, I stand corrected.

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

#137

Post by sundvor »

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…

As someone with ASD/ADHD (professionally diagnosed), and with two children (one diagnosed the same so far), let me just say I'm somewhat taken aback by this.

I hear you say you have ADHD yourself - each case is different and such, but you're posting on HN and I'd say that puts you far above the rest of society. Sure there are challenges but it can also be a kick-arse superpower; learn to embrace it, and most of all be grateful for the things you have achieved.

If anything it has opened my mind about the beauty of a diverse society. There is more to life than a strict adherence to some notion of what it means to be successful.

I've done pretty well for myself even though I've also had some rather hard times - no diagnosis or help existed in the 70s/80s. Then again, people will face hardships in the most unexpected ways so if anything it's made me more resilient.

With the extremely low confidence factor in some of the conditions, this genetic testing is dangerous and unethical on so many levels.

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

#138

Post by sundvor »

subpixel wrote: post #69
siganakis wrote: post #26

My wife and I went through this a couple of years ago, with a 10 week NIPT calling a rare trisomy (chr 9), which is always fatal within a few weeks of birth. It was absolute hell. The key problem here is the waiting and uncertainty. You have the NIPT at 10w, but you can’t have the amniocentesis until several weeks later. When that came back fine, there were questions about whether it was a “mosaic” meaning only a sma…

Our experience was kicked off by a troublesome ultrasound and then confirmed by amniocentesis. The tragedy of receiving news like this is probably fathomable, but I think it may be hard to grasp the emotional and intellectual agony of deciding whether to terminate a pregnancy based on a set of probabilities. It breaks my heart to think that parents face this decision with erroneous data.

I hope you are doing ok; truly sad to read. Agree 100%.

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

#139

Post by jacobolus »

BoorishBears wrote: post #134
jacobolus wrote: post #124

Earlier quoted context omitted.

I am not asking sarcastic questions, and my comment is not intended as any kind of attack. Please read my tone as 100% earnest, just confused. And I hope the top poster will accept my apology that I didn’t phrase my comment to make that clear enough. The tone of voice in the top-level comment reads to me as extremely aggressive/aggrieved, like they had been personally wronged by someone (not just a victim of a tragic…

The entire comment you've written seems hellbent on attributing this person's anger to some specific entity... did you take 5 seconds to ask yourself what the goal of that is? Is the goal to find out what they're angry at so you can invalidate their pain over (what you seem to understand is) a terrible situation? "Oh you're angry at the doctors? Well doctors can't read the future." "Oh you're angry at the tests? Well…

I didn’t understand what they were trying to say (e.g. who is supposed to be "burning in hell") and asked for clarification. Asking people to clarify when their statements are confusing/ambiguous is a pretty normal part of human conversations, and is not as a general rule intended as an attack.

Nobody has a secret agenda here. Nobody (except you?) is attacking anyone, correcting them, telling them they are wrong, policing them, threatening them, insulting them, putting words in their mouth, invalidating their feelings, ....

You seem to be really dramatically upset about this. I don’t really understand why (I assume you are grossly misunderstanding my intention – e.g. “hellbent”?!), but I am sorry to have deeply offended you. I sincerely hope you feel better soon.

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

#140

Post by xyzzyz »

watwut wrote: post #131
lelanthran wrote: post #123

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? But we don't stop there. The bar is considerably lower than "the kid might have problems". The mother, exclusively, can decide whether or not she wants to proceed with the pregnancy through to birth, and she…

This is not true in every state. Abortion is in the process of being outlawed in United States. Texas outlawed it. Supreme court is hostile to it for religious reasons.

It is being outlawed in some states of the Union, not in the United States as a whole. Even if it repeals Roe/Casey, I don’t think that Supreme Court is at all likely to hold that abortion is in fact unconstitutional. As a result, some states will restrict abortion, but others will not.
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