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 small proportion of cells are effected. We were only really in the clear after the 20 week ultrasound.
That’s a lot of weeks to be consumed by wondering about whether to terminate the pregnancy, or wait it out for more information. I have a masters in bioinformatics (in genomics!) and my knowledge of stats and the science was next to useless in the face of these decisions.
I know of couples who simply couldn’t deal with this uncertainty and chose to terminate on the basis of this test alone.
Fortunately for us our child was fine and is a perfectly healthy 18 month old now, but I wouldn’t do the rare trisomy test again.
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 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...)
You are free not to take the test, but I think we would have taken the 0.3% risk to see if it is really Down's. While children with Down's can be gorgeous, I am not up to the task.
We did get the test for it for my two; can't recall if we did any extra ones. Believe we skipped them, at least on the 2nd.
I've come around to maybe change my mind since then, however I'd need to be in a very good position to be able to be up to the task.
I truly wouldn't have been, the ASD diagnosis was hard enough - and made magnitudes harder due to the manipulations of the "autism industry". Do this, do that, or else - you only have one chance for an early intervention, so better throw your own life away or you'll be a bad, bad parent.
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 context of before a child is born.
“ Wanting to have a child who is not special needs is not an evil thing. ”
No its not.
“Choosing to not bring a a child with special needs to term is not evil.”
A huge evil. Just consider your next paragraph explaining why its not evil; it centers around how having a disabled child affects you and others. I do apologize, but I find your last paragraph frighteningly narcissistic .
I can see from your comment history you are catholic. I don't see any point playing the "yes" "no" game with someone. I doubt you are going to convince me of your ethics, I doubt I will convince you of mine.
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 doesn't need a reason other than "I don't feel like it". All those reasons you gave are still better than "I don't fell like it", and you somehow think that those are the wrong reasons?
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 know if it was planned or the result of failed birth control, if the father was/is abusive, and a myriad of other things.
And to be absolutely clear: People would try to tell me "I didn't feel like it" - nevermind that I've never wanted children. I'd have been sterilized years ago if it were readily available and cheap in the US.
> 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]
> The mother, exclusively, can decide whether or not she wants to proceed with the pregnancy through to birth, and she doesn't need a reason other than "I don't feel like it".
The morality of that is quite vigorously contested. And even in places that have elective abortion, it’s often only available in the first trimester, while many of these tests are performed after that.
But even if we accept the notion of elective abortions, it doesn’t follow that any reason is morally acceptable. What if the parents don’t want girls, like often is the case in India and China. It’s okay to abort them? What if we had an in vitro test for sexual orientation? Would it be okay to abort fetuses in that basis?
Moral and legal are two different classifications.
I think it should be LEGAL to have an abortion no matter your reasoning. The reason for this is we need to preserve the bodily autonomy of people who can become pregnant.
Weather or not it is MORAL is another question.
It is LEGAL to protest outside of a veteran's funeral. However, I would argue it is not a MORAL thing to do.
There are plenty of ways we don't protect people's bodily autonomy though. For instance it was illegal for anyone to take Paxlovid until FDA approval.
If we can ban someone from taking a potentially life saving drug it doesn't seem crazy to ban someone from taking what half the population believes is a life ending drug.
We’re talking about morality in the context of this article, since abortions based on this testing are legal in the United States and most other developed countries.
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.
Roe continues to be controversial because it prohibits states from adopting abortion laws that reflect the consensus view. Roe mandates elective abortions until viability, which is toward the end of the second trimester. Roe is thus opposed by many people who don’t believe that life begins at conception for religious reasons. Those people oppose Roe for whatever moral reasons that drive highly secular countries like France to prohibit abortions in the second trimester.
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.
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.
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.
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.
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.
They haven't been consciously selecting for traits, have they? Not with the certainty of a 1% false positive test.
This is eugenism, with its adherents lacking the moral clarity of the of early 20th century eugenists - at leasts they honest about what they were doing!
Well, solely with respect to skin color, which is arguably THE single biggest physical characteristic of concern... Yeah, I'd say >95% of Americans consciously select their mates with skin color in mind. Google the rates of interracial marriage if you don't believe me.
And yes, the skin/eye/hair color of the parents is probably about 99% determinant in the perceived race of the children... There are always exceptions, but two random people who are "white passing" are overwhelmingly likely to have children who are also "white passing".
You can call this behavior "eugenism" or even just racism, and I'm not saying your terminology is wrong... But I dare you to start going around telling people that to their faces.
The alternative is to take the same energy you'd spend on that one unlucky human being and spend it raising 3 healthy children who will go on to live full lives.
Parenting is an enormous time investment and families that take on the burden of raising disabled children almost universally reduce their family size. This is not a decision without cost, to those who lose their chance at life.
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.
Many of these conditions would in the past have been fatal in infancy, and it is only through modern medicine that children can survive them at all. It's fair to expect medicine to provide the solution to the problem it has created. There's nothing natural about children having to live their lives in and out of a hospital.
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 activities because their disabled sibling requires too much care.
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.
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.
Why was there doubt surrounding an entire chromosome trisomy? My understanding was that it is easy to have high confidence about that since allele frequencies in the sequence reads are skewed across the entire chromosome.
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 small proportion of cells are effected. We were only really in the clear after the 20 week ultrasound.
That’s a lot of weeks to be consumed by wondering about whether to terminate the pregnancy, or wait it out for more information. I have a masters in bioinformatics (in genomics!) and my knowledge of stats and the science was next to useless in the face of these decisions.
I know of couples who simply couldn’t deal with this uncertainty and chose to terminate on the basis of this test alone.
Fortunately for us our child was fine and is a perfectly healthy 18 month old now, but I wouldn’t do the rare trisomy test again.