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Women in Denmark can now take a blood test to identify genetic foetal abnormalities in early pregnancy. But it has raised ethical questions.
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- Title
- 'Groundbreaking' new blood test could detect foetal abnormalities
- Published
- Jul 5 2023
- Word count
- 683 words
What's the issue here? Modern technology helping people not have kids with genetic problems. Seems like a good thing.
It does sound like a good thing.
I think perhaps they are talking about a Gattaca type situation where people could potentially look beyond what would be universally considered problems, and start selecting for other things.
Selecting based on genetics is already in practice for those using in vitro. Mostly they are testing for sex but there's no limit to what they could ask for.
Either way, I think it's fine. Even being aggressive with testing and desires, there's still a limit to how much the parents can really do as the fetus is randomly rolled. Are they going to perform an abortion every three months until they've got their perfect combination? What if they never get it? They can't roll back to a previous one, so I think this testing will stay in the realm of looking for dangers rather than desires.
Ah, that could be a problem in the future. As long as it only checks for actual diseases etc. then I see no issue.
But even that isn’t a binary. A lot of studies into genetics don’t give absolute answers, just that certain genes increase the likelihood of developing certain diseases. Similar to how being tall increases likelihood of earning more and so forth.
These type of things slide down the slippery slope VERY quickly.
In reality epigenetics is being found out to play a very significant role in what disease presents itself.
There are some conditions that parents would consider to be diseases to be avoided, but people with those conditions don't see the same way. Dwarfism, for example, is a condition that is constantly defined by normal sized people. But the little people themselves don't get as much say in the matter and usually are outspoken against discrimination against their genetics.
Much of the deaf community doesn't think it's a defect either, but they can shove it where the sun don't shine if they think their personal rationalizations should carry any weight when deciding what's best for our family.
It's so sad when parents decide to keep their kids deaf. Such a selfish choice.
However sad you or me may feel about that decision, it's for the parent to take that call and that's the real ethical issue which most people on this thread are talking about, i.e the issue of biological sovereignty.
Should a parent be allowed to take decision regarding the fate of their unborn or should the society/state intervene and press upon them either the sovereign rights of that unborn or the laws of the nation state which will seek to actively intervene in the process (like Iceland does in case of unborns with Down Syndrome for eg).
In my country I am not allowed to keep my kid out of school, and I can lose them if I don't give them vaccines or fail to take proper care of them. My child is already not under my full control. To some extent, that is true in many places. There are limits to what a parent can do to a child, and also obligations parents must uphold.
I say give them hearing. If, upon adulthood, they decide they wish to be deaf, then allow them to surgically remove their cochlea.
Can’t they just turn off their cochlear implant?
I guess so, yeah. Even better.
The state pressing upon the parents the sovereign rights of the unborn is basically the anti abortion argument that the far religious right uses.
I have two coworkers, sisters, who are both deaf. Something like 90+% without their hearing aids. They are sometimes flamed by the deaf community for relying on the hearing aids, not learning sign language, essentially just living as if they weren't deaf. They hate being deaf. One told me having a shower was scary for her because she has to take her hearing aids out and she can't hear anything while she's in there. Fire alarms, someone breaking in, not a thing.
I understand that people with conditions like deafness and dwarfism have formed communities, cultures around surviving and supporting each other throughout human history and they don't want to lose that. At the same time though nobody in the world is going to choose to be deaf, or make their child deaf. Nobody should be offended by calling these what they are, disabilities. If we can one day prevent them from ever occurring we absolutely should. Just ask my coworkers if they'd rather have been born with fully functional hearing.
I think what helps a lot there is to make very clear the distinction between liberal eugenics (as in, voluntarily participating in making the gene pool "better") and classical eugenics (aka forcing undesirables out of the gene pool). There is plenty of discussion still to be had, as liberal eugenics is still a spicy topic fraught with unexpected pitfalls and unintended consequences. I'd hazard the guess though, that if the difference isn't understood, there's no valuable discussion to be had once someone uses the e-word.
There's this decent primer on the topic. I believe it or a similar doc was linked in a long-past discussion on tildes.
I started my career doing hearing research. This is one of the reasons that I left (the other was no money).
The worst part is that the parents are making the decision for the child. Neuroplasticity decreases with age. If the implants aren't done when the child is young, they won't function nearly as well.
However, if I did have to give up a sense it would be taste/smell then hearing, especially in the modern world.
Yeah I still think in general the parents get to decide. Why would someone with a condition get to decide for your child and not you?
Bit abrasive, but I share the underlying sentiment.
I do wonder though... There's less obvious cases, particularly in neurological/psychological disorders. How would one make that assessment? How would one decide that a disorder need not be prevented, when those unaffected consider the disorder a hindrance to wellbeing, and those affected do not? Surely a majority vote is a bit too simplistic and downright discriminatory?
Eh. I'm sure it is, but that's what happens when a bit of latent libertarianism from my youth lines up with the curmudgeonly tendencies of middle age.
Are you a parent? This feels like the sort of theoretical public policy question I'd have asked a decade ago.
Now, however, I simply want what's best for my kids. The majority has nothing to do with it. Public policies here should be limited to areas of clear public interest, like prohibiting sex selection.
The harsh, curmudgeonly way to put it is that I'm certainly not going to account for the thoughts of those I believe suffer from neurological disorders when deciding what's best for my family. There is no right to force other families to propagate your community for you, and thank the spaghetti monster for that.
This certainly comes from a theoretical, ivory-towery curiosity. I do have more personal thoughts on the matter, but I keep those a bit more guarded. You'll also notice my references to my own genetic condition are a bit... vague. So switch the parent brain off and the nerd brain on for a second. Not that you have to indulge me...
But yes, it's not the question of "how do I decide what to do for my kid?". It's "how do we decide what to do for our kids. Collectively. As a society. Like... autism is a disorder, and given high severity it probably negatively impacts quality of life. It also has unique positive qualities, particularly in lower severity. Now, I don't feel like casting judgement on parents who feel they can't handle a severe case; that's a tough decision no one should be forced to make. But... autism exists on a spectrum, and if we were to go gung ho on this (not saying we should!), we'd have to draw an arbitrary line somewhere. Say autism exists on a scale from 0 to 1. Where's the line? I'm almost certain that if we draw it right by zero, the world will become a fair bit duller. Diversity is generally regarded as an asset, not a liability. Should we flatten that out completely? What would that do to our society? What if we draw the line at 0.4? Will the rest of society unwittingly drift towards making social interactions even harder to navigate for autists, leaving 0.4 autists in a position 0.6 autists were in previously? Should we redraw the line then at 0.3, considering the challenges faced at 0.4?
We can play this game with any spectrum along which there is measurable disadvantage at the edges. If we play this game without good guiding principles of when and where to stop, and how to stabilize the new edge from eroding away again, we're bound to eliminate diversity way too aggressively.
And keep in mind through all this, that I have little doubts that at the very least large parts of the spectrum have no inherent reason to be systematically wrong about their preference for or against autism. Sure, a depressed person might be neurologically biased in how they rate their lot in life, but someone who's deaf or on the autism spectrum isn't. We can't just discard their testimony on the basis of "but I don't trust the way your brain works, so I don't believe you". If we intend to discard such testimony, we have to find a better justification. Deaf culture and the above-described tendencies seem like decent candidates for such a justification.
Again: Thoroughly wearing the nerd hat here. I'm fully aware that what I'm expecting in terms of methodology is completely unrealistic if you're wearing the parent hat and have to make a decision.
(Sorry to any readers who are autistic. There is no intention or motive in singling you out, it's just a good enough example that came to mind. Any other genetic variation that exists on a spectrum, where along that spectrum and outside the norm exist arguable benefits and inarguable challenges would have worked. I hope it's clear that I don't advocate for what I'm sketching out here.)
I have ADHD and I agree. Yes, my life is definitely harder than it would be if I were neurotypical, but I’ll take the ADHD over never getting the chance to exist.
This reminds me of a conversation with an old coworker well over a decade ago. He couldn't even comprehend my hypothetical about how a society without inheritances would result in a fairer, more merit-based wealth distribution. He got frustrated even thinking about such a society, and I got frustrated at his inability to consider the hypothetical.
I hadn't noticed that. We're definitely coming at this from different places, but a good hypothetical always makes for useful conversation, even if I think it's practically a non-starter.
There's a lot to unpack here.
First and foremost, I don't think we necessarily need to draw a collective line. Parents will draw their own lines within the grey area, most will agree against severe cases, and if any society-wide line is necessary we can draw it at whatever point in the scale we find severe cases.
Diversity is often an asset relative to historical homogeneity, but that doesn't mean it's a universal truth. The costs of social support and accommodation also need to be taken into account. As diversity increases the value of further diversification decreases.
Every person's value judgements are inherently biased. And remember, the question above is what's best for society. "Society is best with people like me (e.g. deaf, autistic, Downs, etc.) in it" is no more relevant than the question of what's best for our individual kids. What matters is the collective assessment, made up by the sum of individual assessments of what's best in general, not the sum of individual assessments of what's best for themselves.
I know the moral of the movie gatacca goes against what I’m about to say, but it’s just a movie, it’s not people.
Creating a society where we can plan for and creat healthy people should be seen as a universally good thing.
Sure, we’ll still have people struggling, who refuse to help their potential children have the best possible life’s. But for everyone else, if we could get rid of cancers, or diseases that get passed through genetics? Why would that ever be a bad thing?
The world of Gattica is just one in transition: the sculpted perfected people vs those born with defects would only be a problem for a few generations before everyone got on board with the benefits of being born without diseases or defects.
Is the world of Gattica really all that bad?
What is elided in Gattaca (which really punched above its budget, but probably couldn't go into this) is the socioeconomic aspect. In reality the people who "get on board" will most likely be those who can afford it. The two classes of people are unlikely to consist of ideological holdouts vs the rest - it will be rich and middle class vs poor.
And the problem with that is that so much treatment and help is based on economies of scale. If a disability or an illness (in Gattaca there's nothing actually all that wrong with the protagonist - he is just "likely" to develop heart disease) only affects the bottom 20% of a population, or only affects people in Low Income Countries, then support and research funding will dry up.
(NB this is not an argument against the tech in OP's article, which Denmark will likely deploy universally - it's an argument against taking it in the direction of a Gattaca-like society).
Gatacca's society is a capitalist one. Only the rich could pay for enhancements. That is why it is bad. Not because genetic enhancement is inherently bad.
Denmark is a country with strong social programmes. It's a very short article, but from the context it seems likely to me that the doctor in the article is likely to be interested in social effects and nuance, rather than some kind of absolutism about genetic enhancement. I could be wrong though.
Sure. I'm just talking about Gatacca :P
Sorry, so you are. :-) I guess within Gattaca any criticism of modification itself comes through the character Eugene and his despair. Because their society has moved beyond just wanting people to be healthy and happy. You have to have 12 fingers to play the piano.
So what you’re saying is it’s the exact same world we live in now. With the only difference being that the rich in Gattica can outright be born without potential cancers or sickness. And in our world they can just pay for and afford better care.
So in that regard I would still consider it a better world than our own. Since the inequality still exists in both places, but in place has a better way to be born.
Well no, it won't be the same at all. I think if the rich and middle class in the west almost never develop health problems of any kind, societies will lose the facilities to treat those things. Drug companies will no longer make, say, medicines for type 1 diabetes.
Whereas in the world we are in now those drugs exist and poor people can access them, in my country at least.
An interesting finding from the OECD a few years back was that in countries with a high GINI coefficient (a measure of inequality) the poorer people have worse health outcomes than in countries where the rich/poor gaps aren't so big. That part's a no brainer, but the interesting part is that the wealthy in those highly unequal societies also have somewhat worse health outcomes than those in more equal societies.
I think the rest of the world is actually quite capable of taking care of themselves, if it’s cool we switch subjects a little bit.
The outlook of “well what would the world do without Americas doctors researching all the cures?” Is a very American idea. And has caused lots of problems over the years.
A more recent example was over the pandemic when the gates foundation refused to make their vaccine open source. They did it because they didn’t want poor countries to be able to synthesize their own vaccines, and instead have to pay the higher costs to purchase it directly from America, which resulted in many poor people dying in poor countries.
However, these poorer countries actually did have the resources and capabilities to create their own vaccines, they were just unable to due to corporate greed.
Bringing it back to Gattica, it’s the same thing. It’s a net positive for the world to have people being able to be born without defects. And if that’s still not a thing that can be done in poorer countries, they will also be capable of taking care of themselves and developing their own cures for the bigger problems.
And really, like I said before, the big difference between the real world and Gattica is just the modified humans. We still have all the exact same problems as they do, but without the added bonus of an overall healthier population.
Well yes, I think it must be, if that's an outlook. I'm not American, and to be honest it never occurred to me before that some Americans might be imagining that this is what's happening in the world.
Is it what you thought I was suggesting? I was actually thinking more about economies of scale and infrastructure within each country. For example, here in New Zealand, it's very hard to get size 16 shoes. Local companies simply don't make them, and shops seldom import them, because not enough people need them for it to be worthwhile.
It seems to me that the US already has poor people who have trouble affording healthcare. If middle class America no longer needed it, a lot of medications would be difficult to get.
The reason India has massive pharmaceutical manufacturing capabilities is because that's a big export market for it. Once that's no longer the case it would scale down - it's supply and demand.
By the way, the "Astra Zenica" vaccination was actually developed in Britain at Oxford university. The whole time they were researching it, their scientists were pledging to freely share with the entire world if they found a vaccine.
Then when they found it, Gates stepped in and said they would pull funding from Oxford if it wasn't given to Astra Zenica on a patent basis.
Thank you for adding more details. I’m bad with names and it’s been a few years since I was researching the astra zenica stuff.
I assure you that this is a normal thing for Americans to think. I’m in Canada, and over the years visiting when they learn that I’ve heard all sorts of things about our “socialist medical care” and how they feel bad for us Canadians, and we’re so lucky that America pays for all the medical research going out into the world.
It was shockingly normal point of view in the states when I visited around 2000-2010, not too sure if it’s still the case. Since I only hear from people online rather than in person these days, it’s very possible that lots of Americans still believe that.
And the economy of scale is for sure a good point, I guess I got fixated on one thing you said and started rambling a bit haha.
I think you must be right. Sounds like you have had a lot more experience with it than I have. It's kind of crazy, the disinformation. I had a strange conversation with someone online a couple of years ago who seemed to think that in countries with universal healthcare the government sort of captures doctors and forces them to work for it, for very low wages. It was surreal, like they genuinely thought the healthcare in our countries was authoritarian communist.
I only remember the Astra Zenica stuff because it made me so angry. Watching global vaccine inequality unfold was heartbreaking. Even here within my own country, when we were trying to reach a target before easing restrictions, the wealthiest suburbs were at a 95% vaccination rate when parts of my town were still in the low 60%s.
Slippery slope fallacy, we cross that bridge when we get to it.
I don't think she is objecting to the current tech. It's Denmark, they are very aware of social implications of health policy.
I don't think it's fallacious to say hey, we might run into problems down the track, let's start having a conversation now around how we do this and what parameters we put in place so that we don't have to get to that particular bridge if we don't want to.
It's the same as that story from Iceland that pops up from time to time: the whole of Iceland has around 1-2 births of people with Down Syndrome a year. Why? Because they test 100% of pregnancies, and there's zero social or cultural expectation to carry a fetus with down syndrome. The default medical procedure after a positive finding is abortion, the mother would to have to actively intervene to stop her healthcare provider.
And of course this raises uncomfortable ethical questions. Is a life with down syndrome unlivable? Can we answer this question for other people, on a country wide scale? And as genetic testing improves, what other conditions will become unlivable?
I think this question needs to be flipped around.
Should you want a child with Down Syndrome (or any other serious issue) if you can prevent it and try again?
Down syndrome can be very bad, many people don't realize how bad it can be because we've been inundated with TV shows showing the cutest and most functional people with Down Syndrome. They don't show the severe cases and they almost never show the problems these people have. Most people have a very skewed perception of Down Syndrome due to this.
Growing up with a family member with Down Syndrome was not a lot of fun I can tell you. It is a horrible defect and I wouldn't wish it upon anybody. Not only does the person with Down Syndrome suffer, their entire family does too.
Maybe I'm a bit too callous and utilitarian here, but IMO it doesn't necessarily raise that question. It raises the question whether a life with down syndrome is less livable than one without. That's a different question. And even as someone with a very minor genetic disorder, I'd say that answer is trivially answered with "yes". Though I can certainly see disorders where that is less clear.
The question isn't "will that person get to live at all?", imo, because that question doesn't make sense because there isn't a person there yet. More something like "do we continue creating a person with these genetics?". Well, depending on the stage of pregnancy anyway. Aborting and trying again is akin to "rerolling" genetics and pushing birth back by a while, at least as far as the future child is concerned. (More costly for the mother obviously.) Would you still be you if your mother had aborted and tried again? That's a bit of an odd question, because any number of variations would result in changes to you that would fundamentally affect you, which suggests that such a thing as personality of a foetus is at best a very loose concept. What if a cosmic ray altered your DNA as an embryo, in a way that affects brain function? Did that eliminate a (potential) person from existing and create another one in its place? Is that a reasonable definition of personhood then?
I couldn't square any alternative view up with my views on cognition, personhood or abortion. There is no person there yet, so there are no obligations to that person. Same as you have no obligation to your potential children to procreate. Well, I guess there are obligations to responsibly bring into this world any persons you do bring into it, but not an obligation as to whether to do it or not.
As for where we draw the line, which disorders and conditions we target? I guess practically would be the guide of that. Given the overall frequency of genetic disorders, low-severity stuff would be far down the ladder for now; there's a decent chance that the implied repeated abort-retry cycles would be too costly in various ways. But for high severity conditions there's a good argument to be made that the benefits outweigh the risks. And as we eliminate those, at least those that can be meaningfully inherited, and as the costs of intervention declines (from abort-retry to in-utero CRISPR or something?), I'd expect we target lower intensity disorders. Personally I'd like to see a world in which we work on eradicating even the "petty" genetic disorders, like mine, or like elevated cancer risks.
I'm of course completely disregarding the option of using the same tools to select for non-disease qualities. I'm somewhat partial to increasing objective, absolute utility, as long as access to it is distributed fairly and the risks are well understood. Things like intelligence or immune system improvements. Not at all a fan if access is unequal or if we start selecting for "fashionable" or relative utility traits. Things that elevate you above your peers without giving a measurable advantage if everyone did it. If everyone is made beautiful for example, there's no gain there. But either of these is probably still decades away.
It's a difficult one but at this point I don't think it's a question of whether a genetic abnormality is livable or even if that quality of life is "worthwhile", it's more - are you the parent reasonably able to provide the level of care required? It's becoming increasingly difficult for a lot of people to answer that confidently for a genetically healthy child, let alone one that would potentially require lifelong support and/ or medical interventions.
You could of course carry to term and place a child up for adoption but I think that poses its own ethical questions too.
This is SO important. If the parents know that they cannot adequately care for a child (of any health status) it’s cruel to continue the pregnancy. And it’s not just about whether they have the mental capacity to do it, but also the financial one. Even in places with free healthcare there are high costs - would one parent need to quit their job, for example?
I have no stats to back this up but I have to assume that adoptions of disabled children are not common.
It also raises the question of whether society has an obligation to support personal choices with known costs and outcomes, particularly when they aren't beneficial to the society at large or based on shared social values.
It's one thing to have social services and supports for families which lose the genetic lottery, but it's something else altogether to have them for people choosing such a life.
I don't personally see an issue with that scenario. Society should support the well-being of the person who "lost the genetic lottery" regardless of whether their parents chose to have them while knowing that. It wasn't their choice to be born, so they shouldn't be made to suffer for their parents' actions.
That certainly would be consistent with principles used to determine that fathers who advocated for an abortion are nonetheless required to pay child support.
But that's far from a great principle, even if it's the best solution available. I would be wary of expanding it.
At the very least I would want families who make such choices to be taxed at a punitive level. If society is going to support your choices with otherwise unnecessary services, at the very least your other discretionary spending should be curtailed in order to pay as much as possible for such services.
The issue is not the ability to test for genetic problems, it's that you have basically risk-free access to the entire genome of the child. It may be impractical to try and sequence it in its entirety right now, but that seems to be a mere technological hurdle.
The issue raised by the ethics center is that "It is no longer a question of whether you want a child at all - [it's] whether [you] want this particular child", at least on a theoretical level. Essentially they are warning about the movie "Gattaca" becoming a feasible future.
IMO this is definitely an issue we need to talk about and figure out what is and isn't ethically acceptable. And I have no doubt that different countries will come to vastly different conclusions.
It takes us closer to Eugenics, also gives the government the ability to strongly suggest, default to, or even mandate abortions based on subjective moral principles.
Will we start aborting kids with minor issues like ADHD next?
That's the ethics question.
Can you diagnose ADHD with a blood sample?
I would imagine as our knowledge of genetics increases eventually we would be able to figure out if the future child is left handed or any number of things.
I don't think it's prudent for us to suggest that legislation should be considered based on the possibility that something will one day be misused. We're edging up against Minority Report scenarios. There is no current evidence to suggest that something like ADHD will be able to be diagnosed via blood. The idea that it could be diagnosed in utero, I'm going to be a bit rude in the interest of frankness here and I apologize for that, is laughable. Genetics right now will potentially offer us a probability for certain things, though. Something like "your fetus has a 20% increased change of being diagnosed later in life with ADHD" is possible with enough advancement. I believe we can already do this in vitro for things like cancer risk, and parents can made decisions on potential donors based on that. There's already a selection bias for things like cancer risk with sperm donors as well. I don't think any of this is really a bad thing. If a doctor can offer you the choice between a child with a 20% change of developing an un-curable cancer or a child with a normal risk level, any of us are going to choose the normal base level.
But this all becomes way more complicated when it's being tested in a fetus. I don't think many people would abort a viable fetus based on a 25-35% lifetime chance of ADHD instead of a 4-6% lifetime chance. In fact, people already do this when they reproduce with someone they know has ADHD. I don't think many people would abort because they're left handed, either. I also don't think preventing technology that would allow us to tell a child was going to be left handed because it may be misused is wise. We have far more dangerous things already.
I feel this is important to remember-- we already have a way to decrease the odds of certain diseases and disorders in children and that's by choosing to not reproduce with people who are at risk of passing down these conditions. It's a bit tougher if you yourself want a kid and you are at high risk of passing down the genes for unwanted conditions, but even then you are only one half of the equation.
I mean to fair I can't personally imagine choosing a life partner based on the probability they'd give me "optimal" children, but I'm sure it has at minimum crossed some people's minds.
Genetic tests for fetuses seems to be a natural step in a direction people already are naturally inclined towards. While I wouldn't choose a life-partner based on his genetics, I would potentially choose to decline having kids with that life partner if I knew genetic information about him that provides me with knowledge that our child would have an increased chance of having a really shitty life.
I know from a 23andme test, for example, that I am a carrier for a (quite rare) gene that would give my child a 25% chance of having a disorder that ensures both deafness and blindness (among other things) were it's father also a carrier of the gene. Would I choose to have a child with a man who is a carrier of this gene? No! But on the flip side, if I became pregnant and this hypothetical man was the father AND there was a genetic test that could tell me if the fetus will grow to be a person with the condition, then yes I'd want to know and yes I'd abort it if I knew it would have the condition.
It's really just the same story we already have with down syndrome, and to be honest I don't see why it's a big deal.
Definitely not disagreeing with you on any of that
I'm going to regret posting this, but hey, Twitter is down so I gotta get in my masochistic posting somewhere...
Pure genetics are not the only way you can become disabled, so using genetic testing to rule out disabilities during pregnancy does nothing to guarantee that your kid will be healthy or have the "best possible" quality of life. So like... if you truly cannot ever imagine raising a disabled child, maybe don't have one.
Expanding genetic testing focus from fatal conditions to non-fatal ones turns into a very weird situation where acquired disability rates stay steady, but congenital disability rates decrease. What does the disability community become when it loses the people who grow up disabled? What knowledge and culture is lost?
Disability isn't simply a medical status or a defect. It's complex - it's hardship, but also creativity. It's isolation, but also community. It's shame, but also pride.
People are always going to be disabled, whether it's through genetics, illness, injury, or age. And that's okay - or it would be, if our society focused more on supporting disabled people than on trying to make sure we don't exist at all.
Brave but necessary view point. I'm one of those people who are hated by both sides of this issue and today I don't feel that brave.
Exactly this. Let's say that a couple decides to select only fetuses that are perfectly genetically healthy, and on a visual scan show no abnormalities because they come from a place of deep love for their perfect child to have the least amount of suffering possible. The day baby goes home from the hospital, there's a terrible car accident and baby becames unable to walk. that's life.
In my friendship circle, there are three perfectly healthy teens who "failed" their prenatal genetic screenings. One of them even failed the CVS, the other two decided not to do CVS, and all the moms were high risk. The results were false positives, and none of conditions would have been fatal conditions.
Abortion is not considered murder. But it is a medical procedure that would have result in these three human beings, a musician, a funny and smart kid, and a trend settingly stylish teen, not being alive today if their parents had chosen to play things safe.
There are no guarantees in life. Maybe don't conceive children if there isn't support that a disabled child would need.
It's not just "more information can't hurt" if that information will be used to un-select cells that you are responsible for. That kind of decision of what ifs needs to be made before someone tries to conceive. (In a perfect world. In a less perfect world we can all chip in for those who find themselves pregnant and need support)
Yeah... Honestly, I have so many conflicting feelings about this topic; it feels so complex and nuanced, and it's upsetting to see people simplify that down to "genetic testing is always good, because disability is always bad and should be eradicated as much as possible." Eesh.
Here's the thing - as someone with a uterus, I'm staunchly pro-abortion. If someone doesn't want to be pregnant, they shouldn't be forced to stay pregnant; bodily autonomy is the most important factor.
But as a disabled person, I feel uncomfortable when people declare that it is always morally good to abort a fetus with a non-fatal disability (like being deaf). If someone chose to become pregnant and have a child, then their bodily autonomy isn't being threatened by the pregnancy. It's no longer a choice between being pregnant or not being pregnant at that point - it's a choice about what types of fetuses are allowed to be born and become people, which in turn is a value judgement about what lives are worth living (which impacts disabled people already alive). And I'm not sure how many people think deeply enough to realize that their theoretical or scholarly debates affect real people.
Although I guess some people in this thread are pretty open about it - they feel being disabled is always a bad thing, and that whatever a disabled fetus could be is outweighed by whatever suffering it might experience. This post is not for them, because anyone in favor of liberal/voluntary eugenics won't really care about the opinion of a disabled person.
But for people who might be persuaded to think a little more deeply about this, I'll end this rambling post with this: abled people, including medical professionals, consistently rank disabled people's quality of life lower than disabled people do themselves. Abled people often have no clue about what makes a life worth living to disabled people; many disabled folks have stories of people telling them to their face, "if I was like you, I'd have killed myself already." It's usually meant to be a compliment, I think? Saying the disabled person is stronger than them. But those abled people actually have no fucking idea how they would react if they became disabled. Yet they make judgements about what lives are worth living based off their fantasies of never-ending suffering ended only by medical euthanasia.
Edit: in case it wasn't clear, I don't think people should be individually restricted from aborting a fetus with a disability, because any restrictions on abortion lead to suffering. And I'll admit it's possible that if the idea of carrying a fetus with a non-fatal disability to term is upsetting, bodily autonomy could actually still apply. But if that's the case... I just go back to the fact that you can't prevent all disabilities, so having a child is accepting some level of risk that they could be disabled. If that's not something you can accept, that's... Not a good thing.
Not everyone making the argument in favor of testing and aborting is able bodied. I have a few genetic conditions that impact my life along a spectrum (ADHD at the end of "mostly okay" and EDS on the end of "I'm afraid I'm going to have to retire from the profession I love in higher ed and move in with my parents at age 36").
I'm still of the opinion that choosing to have a disabled child is not a gift to that child. Once you are a person, of course protect that person, I'm not advocating for people like me to be killed. However I think choosing to have a child when you know they will have a life altering disability is not a great thing to do. I did want to have a child and A. I knew I wasn't able bodied enough to care for one and B. I was not about to saddle someone with the quality of life issues I have.
I just think we don't understand consciousness, sentience, personhood, and existance as a whole enough to really talk about this in the context of what this would mean for "people not being born". If "I" was aborted and my parents tried again and had a healthy fetus, would my consciousness have settled or developed in that fetus? I'm inclined to say probably not but we don't know.
I probably could have made this more clear, but I did want to chime in that people making the case against bringing more disabled people into the world also does include the voice of disabled people.
That's a good point about it not just being abled folks who feel that way, thanks! Honestly, your comment resonates with me in a lot of ways.
I don't think disability is a gift, personally. I have multiple disabling illnesses, a mutation that makes me more prone to cancer, and probably a connective tissue order than might be genetic (maybe hEDS, maybe HSD, who knows). And I understand not having a kid because of health issues - I know that with my health I wouldn't be able to handle raising even a perfectly healthy kid, let alone a disabled one.
I just think this issue is a lot more complex than people realize. I didn't even bother getting into the contradictions in how I feel about a cure for my particular disabilities, for example. Or how much of my focus on COVID the last 3 years has involved trying to prevent people becoming ill in the way that I did, while balancing that with the belief that my life is not a tragedy as some people would paint it. Or the impact of internalized ableism on these conversations. Or the fact that the majority of genetics is so fucking complicated we can really only test for a small minority of issues.
Just like... after a huge thread of responses about how obviously this is always the good and moral thing to do, how terrible Deaf parents are for having Deaf kids, how a world where poverty stratifies genetic disease status is actually better than the world we live in - I wanted to provide alternative viewpoints. Even if they're messy, or contradictory, or even a little bit superficial, since I'm hardly a disability studies scholar or disability justice activist.
Anyway, thanks for commenting! I thought it was clear. :)
Well, thanks for speaking up. Personally, I value your perspective a lot, even if it isn't immediately obvious from what I otherwise wrote in this thread.
That said, I think the consciousness/personhood point you replied to here is absolutely essential. If that were to be wrong, the whole argument would come crashing down. The only reason this discussion is acceptable is because we don't think any potential children are harmed. Hence the discussion mostly shifts to the effect that the replacement of disabled children with abled children would have. And I have to say, on some visceral level, the thought to be among the last people with a incurable and now-prevented disability or illness is terrifying. So I do sympathize with those arguments you made. So even if we prevented all genetic maladies, treatment and accomodation of disabilities isn't suddenly "solved".
I think you're failing to distinguish between aborting a pregnancy and killing a person who has already been born. People advocating for the former are not advocating for the latter (unless they're assholes).
They/we feel being disabled necessarily causes suffering that would not otherwise be experienced, and that if you have the choice to make a newly created human not disabled, it is ethical to do so. No more than that.
Once you're capable of forming opinions and making decisions - which, notably, requires that you exist first - your own bodily autonomy absolutely should take precedence over this, which is why we consider it much more unambiguously and obviously wrong to kill disabled people and to cure their disabilities without their consent. But unborn fetuses don't have bodily autonomy.
Not really. I did say that I want abortion to be legal, and I don't think it needs to be said that I don't think it should be legal to kill people - so I'm not failing to distinguish between the two. I'm saying that deciding you don't want to have a disabled child can sometimes come from the same place as doctors encouraging disabled people to use MAID in Canada or giving people "do not resuscitate orders" without their knowledge. It's a distinct lack of valuing the lives of disabled people, and a solid belief that disability is always bad. Many people can't see any potential value in the life a disabled fetus might live, in the way they do value the potential life of a wanted abled fetus. The disability overrides everything else, despite them often not knowing a thing about what disabled lives are actually like. That is a value judgement about disabled people as a whole.
I understand where people are coming from. As a disabled person, who values my life including some of the parts of it influenced by my disability, I disagree that this is an obvious ethical "good." Especially since there is no guarantee that aborting a fetus with a genetic disability will result in a subsequent fetus that never becomes disabled. Disability is a natural part of life. Parts of it are hard, but so are many other parts of life.
Also I never claimed that fetuses have bodily autonomy, so... not sure what to say to that. And your confidence that it is "unambiguously and obviously wrong to kill disabled people and to cure their disabilities without their consent" is... uh... very optimistic? (See the real examples I gave above about people encouraging or enacting the deaths of disabled people. Hell, see the ongoing pandemic that has killed countless disabled people, is still killing us, and is no longer a priority to stop because our lives have less value and are seen as less deserving of protection.)
No, it isn't. That's what I'm trying to say. There is a huge difference between existing disabled people and potential disabled people. To make a value judgement about what categories of new people we should create in the future does not imply any sort of value judgement toward existing people in those categories.
My position is solely that, given the chance, we should not create new people with disabilities, for the same reason it is unethical to give an existing adult a new disability they didn't have before: because being disabled is objectively worse than not being disabled (if it wasn't, we wouldn't call that condition a disability). To be abundantly clear, that is not the same as saying disabled people are worth less, and I wish people would stop conflating the two.
I brought up the bodily autonomy of adults vs fetuses in an attempt to demonstrate this difference: bodily autonomy is why you have the right to live, regardless of what other people may think is best for you. Fetuses do not have an inherent right to life, so it doesn't make sense to talk about whether we value their lives. They don't have lives.
So focusing on the one part of your argument that doesn't rest on this misunderstanding:
If I may propose a reductio-ad-absurdum thought experiment, is it ethical to break someone's leg, on the basis that they may break their leg in a car crash later?
Nah, thanks, I've had enough. You disagree, and nothing I say will change your mind, so why waste the energy?
Fair enough. Have a good day.
I agree with you wholeheartedly. I think there's another layer added by society fully failing to support disabled children and their parents at least in the US. (And in countries with better support, could widespread use of pre-natal tests result in reduced supports). So as much as I agree, I also am empathetic to the parents that make a choice to abort because of a disability, in the same way I am empathetic to those who abort due to financial concerns.
But putting a value judgement on it, or starting to treat carrying a disabled fetus to term as an ill advised choice that leads to reduced support for the child/family is a real icky situation.
I'm not really prepared to add to this topic, but I had to say thank you for this comment and your other one. You're the first person I've ever seen navigate the subject with appropriate nuance and sympathy.
Reading the the rest of this thread was very hard for me and coming to the end and finding your comment almost brought me to tears. Thank you again.
Thank you - I'm very glad I posted, in that case!
One of the ethical questions not being spoken about enough is what reason should a person give before they're allowed to access abortion? In my opinion we should allow abortion on demand up to 20 weeks, and abortion for a wide range of medical need at any time after 20 weeks up to birth.
Gate-keeping abortion behind things like "will the child be severely disabled?" is a way to restrict abortion, and that's infringing on the rights of women and birthing people.
In the Netherlands you can have an abortion up to 24 weeks (but most doctors use 22 as a maximum). Other than that there is no gatekeeping. There used to be a minimum reflection period, but that is no longer the case. If the woman wants to have it done, she can have it done. No ifs, ands or buts.
Personally I don't see any ethical problems with this.
The Netherlands is by far the most open country in the EU when it comes to abortion though. In neighboring Germany you can only get abortions up to 12 weeks legally (and many practices further limit this to 10) and you need to have gone through counseling beforehand. Denmark similarly has a 12 week abortion ban unless the mother's life is at risk or she gets special authorization for extenuating circumstances.
I never knew we were such an outlier with this. I thought it was like this in most of Europe. TIL...
OT:
The more I learn about our vertically challenged neighboring country, the more I like it. And that isn't just my liking of cheese speaking.
Tell me something bad about it so I can feel better about not actually moving there.
Healthcare premiums are getting more and more expensive every single year. Housing is expensive.
Have to leave the western world to have that stop being an issue.
We're one of the least environmentally conscious countries though, so there's that for a negative.
In Denmark, abortion after 12 weeks is only allowed if there's risk to health or life of the mother UNLESS you get special authorization. There are a variety of reasons you can get special authorization, but one of them IS risk of birth defects in the baby.
I'm uncomfortable with the eugenics inherent in aborting fetuses with risk of birth defects, but I recognize that it should be a pregnant person's right to abort for any reason -- no one should be forced to carry a pregnancy to term if they don't want it. But banning abortion after the first trimester UNLESS there's risk of birth defects is much more insidious to me imo.
This is not new is it? This has been a thing in the Netherlands for a very long time now? In the Netherlands it's called NIPT test (Niet Invasieve Prenatale Test, or Non-Invasive Prenatal Test) and many women have this test done so they can make an informed decision about their pregnancy.
I think it's a very good thing. If you can see a baby is going to have a serious birth defect you can choose to abort it. I think it's unethical to force people to have babies that are going to have major problems. Not only does the baby suffer but the family does as well.
The new part of it is that this test will be able to test, and confirm(?), more disorders than the NIPT-test. IIRC the NIPT only shows discrepancy in the chromosomes of the fetus and a more invasive test is needed to confirm what kind of discrepancy it is.
The article is kinda... lacking though :)
As long as the abortion is completely voluntary on the part of the parents, it's a good thing. The potential for the government to manage, or even just encourage, abortions based on specific traits is a worrying prospect that we should be wary of.
It's important to listen to disabled people, and acknowledge different models of disability, when discussing these things.
The social model of disability highlights the importance of the environment in causing disability and making impaired people disabled with a lower quality of life.
So a key question for me is: in an ideal world where people with Down's or other genetically caused impairments have all of the support needed, and society was changed to fully accommodate them, how much could Down's affect someone's quality of life, and would terminating a pregnancy still be something people would consider?
At it's worst case, this combination of technology and policy is a form of eugenics which reinforces a medical model of disability, preventing impaired people from being born, and weakening efforts for social transformations that should lead to disabled liberation.
In the UK we recently had a case where a disability rights campaigner with Down's went to court to change abortion law, as currently a 'substantial risk' of 'severe handicap' is an exception to the 24 week cut-off period.
https://care.org.uk/news/2022/07/abortion-and-disability-what-does-the-law-say
I agree with your post but it's important to note that she was supported by groups that have shown no previous interest in disability rights, but which are strongly anti-abortion. One of the MPs supporting her has a consistent record of voting against disability rights.
How can we consider such a question without acknowledging reality? Do the people backing that UK lawsuit have children with Down's or are they planning to have children?
It's easy to make such idealistic arguments if they aren't the one who is going to have to bear the brunt of the consequences.
There is no issue in my mind looking for and selecting against genetic abnormalities which may have severe repercussions on not only my child's life but my own. If you have the means to do so, I don't even really consider it responsible not to do so.
If everything is ideal both in society and in the technical ability to choose/select for genetic abnormalities, is it ethical to not do so?
Agreed. I have no end of sympathy for Heidi Crowter; it must be so disheartening and horrific to be faced with something that effectively feels like the question of whether you deserve to exist or not. It's absolutely important to think about the people with these disabilities, but we also have to think about the people that are responsible for their care and upbringing.
Looking at her wikipedia page she's also had leukaemia, pneumonia and kidney failure. She had to have cardiac surgery not long after she was born. She's got two older brothers and one younger sister - how did all of this impact not only her parents but her siblings as well? It is wonderful that her parents raised her through all of this and notable that they chose to continue expanding their family after she was born, but the key thing is that it should be a choice. Heidi knows what it is to live as someone with Down's but does she know what it is to raise someone in those circumstances? Does she have any children of her own and do any of them have genetic abnormalities?
I can only hope that all the kids involved managed to have happy childhoods and that the parents coped well, but not everyone is built for that. If she ever got her wish and screening was outlawed, I think the end result would be a significant number of those children placed in the care system or otherwise subjected to pretty unhappy lives.
How is this relevant to decision making in 2023?
If you're going to base today's public policy on how you imagine things would be in an ideal world then there's no reason why we can't base today's public policy on an ideal world where we've selectively eliminated down syndrome altogether.
As a middle aged couple, my wife and I could have another child however the risk of genetic abnormalities is much greater than when we were younger. There is zero chance that "disabled liberation" ranks as a point of consideration when deciding what is best for our family. And if progress like this helps stifle suggestions that it should then so much the better. "My body, my choice" is sacrosanct.
It's truly terrifying watching a group of otherwise reasonable-seeming people calmly discuss why "eugenics is good, actually" with many agreeing that it would be better if people with certain genetic traits simply never existed. I'm not sure I have it in me to make an argument, I'm instead just deeply uncomfortable looking around and realizing that people I interact with every day probably agree with you. It's genuinely terrifying and makes me feel so small.
Don't get me wrong, I believe that in a legal sense, an abortion should be allowed for every reason because the reality is any barrier will simply be used to make access more difficult for everyone. I believe in bodily autonomy, but that doesn't mean that autonomy can't be wielded in heinous ways.
I believe the consensus here is that "we should allow parents avoid having children with generic defects". On the matter of eye and hair colors the jury is still out.
I think you're missing a nuance with eugenics that the biggest problem with it was the fact that it was a system enforced by the state, authoritarian governments predicting they could create the perfect people by eradicating free decision and using SCIENCE! To create the perfect (see: most white) civilization.
Eugenics in the form of the free decision of individuals? It's going to cause some harm, but as all free systems tend to do, the benefit will outweigh the harm.
And the end what we must protect is both the right of parents to choose to have an abortion for the reasons of their choosing, and for people to not. Also for reasons of their choosing.
What ultimately scares me here is the idea that as this becomes normal, you may see a point where it's considered immoral to have a kid with those genetic abnormalities at all.
Imagine a pair of parents who have genetics that always result in these tests failing. Imagine a society that says no, you're not allowed to have kids anymore.
Although I do believe that as this becomes a commonly used tool and it is effective, those who up to have kids in that way should have to pay in full for the cost of that decision. Because of that point it's no longer a tragedy when a kid is born with a genetic disability, it's a choice.
This last bit about "those who choose to have kids in that way should have to pay" is exactly what I'm worried about. It is essentially gattaca. It ignores that disability can happen in the womb unrelated to genetics, and at any point after too. (Plus epigenetics). It ignores the difficulty some people have in conceiving and the balance of wanting a child over the "perfect" child. Because again, no one can guarantee a healthy child.
If we had a society where everyone has the support they needed to raise their children, regardless of ability, then it would truly be a choice. And that would be the only ethical implementation IMO.
Part of my thinking there is that this would only Apply when:
Doctors: hey this is is almost certain to have (specific crippling disability), you should abort.
Parents: no.
Kid: born with crippling disability.
Rather than a generic case, because people are always going to have disabilities for billions of different reasons, and they'll likely need support as adults as well
Could come in the form of an extra tax or something like that. Losing child tax credits. Something of that form, because you've chosen to burden society. You can never collect the true costs, because nobody would be able to pay those true costs, but you should without question have to feel the fiscal burden.
Part of making decisions is being responsible for them, and if you choose to have a kid with a disability like that you should be very very ready to pay those consequences. I'm sure as hell not going to be willing to, even though I believe caring for the disabled as a whole is very important.
I think even the term crippling in "crippling disability" is demonstrative of the problem. What is that line, and how in the world do you draw it equitably. If a society is built in an accessible and equitable manner how many disabilities aren't severe anymore? If everything is wheelchair accessible is relying primarily on a wheel chair "crippling"?
Plus we're now pressuring/forcing abortions by financial means leading to newly impoverished families who didn't want an abortion for any number of reasons. That would just lead to those parents not getting the testing done at all. Hell, it would lead to me not getting the testing done and I'm firmly pro-choice.
This is the same line of "you shouldn't have had kids if you can't afford them" that leads to cutting financial assistance for needy kids. It's making the system worse with an (explicitly) eugenicist twist on top. We shouldn't be pushing abortions for any reason, it's fundamentally bodily autonomy. Just like we shouldn't be blocking abortions.
Create a system where we offer genetic testing, provide education and also provide full support to all children/parents (we can add UBI too) and you're getting to a place where this conversation isn't even necessary. But without it, it's just a "I'm sure as hell not going to pay for them" which is our current system at its worst.
Any disability that requires accommodation of this form, really.
The fact you have to give all that extra expense for accommodation is exactly why people making that decision should have to pay for it.
Yes. A thousand times over yes. Being able to reach a light switch and having special car pedals doesn't make it alright that they can't walk.
This is already a large percentage of abortions. People in good financial situations either generally afford birth control or are able to afford having kids.
Make the testing mandatory, or assume liability by default unless complications make it worse.
This "you can't pressure abortion by financial means" is the same argument people use to say that guys should still be paying child support for 18 years even when they didn't want a kid and abortion is an option. It's a weak excuse and your right to "choose to act freely" does not override the fact that your decisions have consequences and you've got to pay for them.
Absolutely not. Because a kid is generally a net contributor to society. If you can't afford kids you should still have them and we should be happy to subsidize them because kids are a massive massive driver of everything in society.
But if you choose to have a kid who dies of a genetic disease in 15 years, all you've done is make everyone else pay for something that didn't have to happen.
If society supported children fully, individual child support wouldn't be an issue. (Also this rather one sided portrayal of child support ignores that women are also required to pay child support anyway. )
I genuinely don't understand seeing the harm caused by people being financially pressured to have abortions now and doubling down on that with a dose of ableism/eugenics on the side. I'd rather not continue from here.
Are they obviously bad outcomes? Should humans with bad outcomes be aborted?
I once heard someone say that if one's goal is to alleviate suffering, the answer will always lead to killing your and or someone else: existence is suffering in varying degrees.
Nowadays we can no longer imagine aborting a child with missing toes or one blind eye or a disabled hand. Only a hundred years ago it would have been not even a debate.
The ethics isn't "given we want to alleviate suffering, should we terminate pregnancies". It's that "is it a given that we must alleviate suffering even if it means termination of a pregnancy."
And this news article does not at all talk about false positives. How many healthy children are we okay with killing just in case we miss a few with disabilities, because we want to alleviate suffering?
This article isn’t about killing children, though - it’s about abortion. Abortion ≠ murder.
And for the record, nowhere on this post has anyone argued in favor of murdering disabled children, either, regardless of their state of suffering / non-suffering.
No one is killing healthy or unhealthy children, nor debating the obvious immorality of such an act. What we are debating is the morality of choosing to abort a fetus based on genetic markers.
No fetus has an inherent right to grow into a person, as it is a clump of cells that has not reached the stage of personhood yet. In that sense, I believe it is the right of the mother to choose whether to have an abortion or to carry the pregnancy to term in all circumstances. However I recognize that there are additional effects on society when people start to systematically select for certain traits over others. We are already seeing some problems in countries where aborting females more often than males is/was common. A society tends to function better, we have found, when the men do not outnumber women.
On the flip side, Iceland has more or less abolished Down Syndrome, and they're functioning fine as a society.
So the question is this: will genetic selection for or against [insert trait or disability here] lead to unintended negative consequences on society as a whole?
The reality is we don't know. Maybe sometimes it will and sometimes it wont. Either way, the impact of genetic selection on a societal level should be considered. In the end, though, no woman should ever be forced to go through with a pregnancy she doesn't want, so I would not feel comfortable regulating it even if regulating it would be "better for society." Society will just have to deal with it, imo-- I doubt it is so fragile that it can't handle a change in demographics.
You abort a fetus. Not a human.