The Last Children of Down Syndrome(theatlantic.com)
theatlantic.com
The Last Children of Down Syndrome
https://www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928/
140 comments
> It is entirely possible, without any dissonance whatsoever, to respect the autonomy and wonder of human life and the rights of people with disabilities, while also understanding that having children with debilitating permanent disabilities can be a heartbreaking exercise that drains you emotionally, mentally, and physically. Nobody reasonable wishes for their child to suffer from such a disability
I have a daughter with Down's, and I agree with what you've said here. I love my daughter and would lay down my life for her in an instant, but of course that doesn't mean I'd glad she has Down's and all the related health issues that can go with it.
> On the flip side, all of them required life-long assistance and care, never able to function completely independently, and lacking in almost all other meaningful quality of life factors.
This paragraph did surprise me though. Attitudes towards Down's have changed a lot in the past couple of decades, and at least in most of Europe, it's not uncommon for children with Down's to get a mainstream education and in adulthood for many to live (largely) independently. The level of intellectual impairment and physical and mental illnesses does vary a lot however, and undoubtedly some people will need life-long care regardless of the opportunities available to them.
I have a daughter with Down's, and I agree with what you've said here. I love my daughter and would lay down my life for her in an instant, but of course that doesn't mean I'd glad she has Down's and all the related health issues that can go with it.
> On the flip side, all of them required life-long assistance and care, never able to function completely independently, and lacking in almost all other meaningful quality of life factors.
This paragraph did surprise me though. Attitudes towards Down's have changed a lot in the past couple of decades, and at least in most of Europe, it's not uncommon for children with Down's to get a mainstream education and in adulthood for many to live (largely) independently. The level of intellectual impairment and physical and mental illnesses does vary a lot however, and undoubtedly some people will need life-long care regardless of the opportunities available to them.
that drains you emotionally, mentally, and physically
Also financially. The level of care required isn't something that all people can afford.
Also financially. The level of care required isn't something that all people can afford.
> meaningful quality of life factors.
What are these?
What are these?
It depends entirely on the person what sort of effects Downs Syndrome will have on their life. Some people born with Downs Syndrome have fairly mild intellectual disability and so are capable of basic life independence and holding down menial jobs, however many people will have moderate to severe intellectual disability and be completely incapable of living independently at any point in their life.
I think many people don't understand the depth of that statement, "living independently" isn't just a matter of financial independence. Certainly there is a place where society could help to fund the living expenses of the severely disabled. What I mean is that many people with Downs Syndrome are unable to perform basic tasks of life without assistance, such as maintaining their living space, cooking for themselves, being able to get to a doctor's appointment on time, being able to pay bills. Note, I don't mean forgetting to pay bills, which can be resolved through assistive technology, I mean being unable to follow the process to actually make a payment.
The life expectancy of people with Downs Syndrome has become quite good, and is around 60 years of age now, and yet for many of these people they will never know a moment of true independence and agency in their entire lives. They will need a permanent, likely live-in, caretaker from birth until death, long after their parents have passed away.
One unfortunate reality is a prenatal test can't tell you how severe the disorder might be. Your child-to-be could end up being one of the kids with Downs Syndrome who effectively has some physical abnormalities which can be accommodated and is a little slower at learning, but could otherwise graduate college and live a normal life. Or they could end up being one of the many children with Downs Syndrome that suffers from a deeper intellectual disability. IQ is one of those things that's mostly meaningless, but on the extremes it matters. The average IQ for adults with Downs Syndrome is 50, meaning that for most people with this disorder they will never get beyond the intellectual capacities of a small child. Some, unfortunately, are mostly non-verbal and unable to carry on conversation.
I don't think I should be any more specific than that, because it wouldn't be fair to the privacy of the people I've volunteered with. If you're legitimately curious, I'd encourage you to just search online. There's a lot of information about Downs Syndrome care out there.
I think many people don't understand the depth of that statement, "living independently" isn't just a matter of financial independence. Certainly there is a place where society could help to fund the living expenses of the severely disabled. What I mean is that many people with Downs Syndrome are unable to perform basic tasks of life without assistance, such as maintaining their living space, cooking for themselves, being able to get to a doctor's appointment on time, being able to pay bills. Note, I don't mean forgetting to pay bills, which can be resolved through assistive technology, I mean being unable to follow the process to actually make a payment.
The life expectancy of people with Downs Syndrome has become quite good, and is around 60 years of age now, and yet for many of these people they will never know a moment of true independence and agency in their entire lives. They will need a permanent, likely live-in, caretaker from birth until death, long after their parents have passed away.
One unfortunate reality is a prenatal test can't tell you how severe the disorder might be. Your child-to-be could end up being one of the kids with Downs Syndrome who effectively has some physical abnormalities which can be accommodated and is a little slower at learning, but could otherwise graduate college and live a normal life. Or they could end up being one of the many children with Downs Syndrome that suffers from a deeper intellectual disability. IQ is one of those things that's mostly meaningless, but on the extremes it matters. The average IQ for adults with Downs Syndrome is 50, meaning that for most people with this disorder they will never get beyond the intellectual capacities of a small child. Some, unfortunately, are mostly non-verbal and unable to carry on conversation.
I don't think I should be any more specific than that, because it wouldn't be fair to the privacy of the people I've volunteered with. If you're legitimately curious, I'd encourage you to just search online. There's a lot of information about Downs Syndrome care out there.
Everything, from cognitive ability, to chronic health problems in vision, hearing, heart, diabetes, etc. And of course, the immense weight on caretakers.
That's the million dollar question here: is the Downs person's life worth more than the person (or people) they replace?
Not really. At the point when the decision should be made there is no Down's person only a potential person.
Here in Norway genetic counselling is offered if the mother to be is above a certain age (sorry can't remember the number). So my wife and I had sessions with a genetic counsellor who explained the statistics related to birth defects. The decision is of course entirely up to the mother to be, and her partner, the counsellor in my experience is very careful not to sensationalise anything and was very neutral.
The counselling and tests are provided early enough that an abortion can be provided at low risk to the mother and before the foetus is viable.
Here in Norway genetic counselling is offered if the mother to be is above a certain age (sorry can't remember the number). So my wife and I had sessions with a genetic counsellor who explained the statistics related to birth defects. The decision is of course entirely up to the mother to be, and her partner, the counsellor in my experience is very careful not to sensationalise anything and was very neutral.
The counselling and tests are provided early enough that an abortion can be provided at low risk to the mother and before the foetus is viable.
The difficulty I have with this is we are now actively choosing who gets to live and who doesn't. Yes it's at a very early stage of pregnancy but it may have a profound impact on the future of all human societies. The morality of such actions should be examined thoroughly. This is far from a cure to genetic diseases it is removal of diseased individuals from the population. Any selective removal can be dangerous. If you look at China's sex selective abortions and the social pressures that is putting on their society as one example. If you look at the Nazi eugenics campaigns to see how bad it can get. I really think people need to think long and hard before they take a side on opening the Pandora's box.
This isn’t new, either nature took care of things in the past or people did...
We’ve essentially only had a few decades when it was not possible to identify these conditions in the womb and society was able and willing to support these individuals and allow them to live on.
Realistically in the past these children would’ve been killed by their parents either directly or through abandonment and those who weren’t often didn’t survive through adulthood especially once their parents have passed.
We’ve essentially only had a few decades when it was not possible to identify these conditions in the womb and society was able and willing to support these individuals and allow them to live on.
Realistically in the past these children would’ve been killed by their parents either directly or through abandonment and those who weren’t often didn’t survive through adulthood especially once their parents have passed.
Yes some Greek societies left the weak babies to die from exposure others put their children on the alter in the hopes of better crop yields. Because it has been done in the past doesn't justify it now.
You don’t need to go that far throughout history, children with severe mental or physical disabilities didn’t live long even half a century ago even in most developed nations they would be abandoned and for those that weren’t society didn’t had the facilities to support them.
Down and autism today seems so much more common simply because these individuals get the chance to live to and through adulthood.
These conditions don’t only affect people’s mental abilities they have a plethora of other health issues too.
75% of people with Down syndrome that die die from respiratory and cardiovascular illnesses as they suffer from immune system issues and frequent inflammation, with the current pandemic a lot of them have died because if they do get infected they are severely affected.
https://err.ersjournals.com/content/26/143/160098
Before modern medicine and the flu jab many of them wouldn’t survive a harsh flu season...
Heck before we knew what Down syndrome was most of them probably perished as infants from infections that healthy individuals would just shrug off.
Down and autism today seems so much more common simply because these individuals get the chance to live to and through adulthood.
These conditions don’t only affect people’s mental abilities they have a plethora of other health issues too.
75% of people with Down syndrome that die die from respiratory and cardiovascular illnesses as they suffer from immune system issues and frequent inflammation, with the current pandemic a lot of them have died because if they do get infected they are severely affected.
https://err.ersjournals.com/content/26/143/160098
Before modern medicine and the flu jab many of them wouldn’t survive a harsh flu season...
Heck before we knew what Down syndrome was most of them probably perished as infants from infections that healthy individuals would just shrug off.
> choosing who gets to live and who doesn't
It's worth noting that, to many people, someone that isn't born yet isn't a "who" at all yet. That is, in my opinion, why we see such a large gap in opinion between "pro life" and "pro choice"; (many of) the former think of it as killing, (many of) the later don't see the unborn as a distinct life, just another part of the mother. That disconnect leads to a lot of talking past each other.
It's worth noting that, to many people, someone that isn't born yet isn't a "who" at all yet. That is, in my opinion, why we see such a large gap in opinion between "pro life" and "pro choice"; (many of) the former think of it as killing, (many of) the later don't see the unborn as a distinct life, just another part of the mother. That disconnect leads to a lot of talking past each other.
> I really think people need to think long and hard before they take a side on opening the Pandora's box.
The box was opened 40 years ago at least, as a fetus I was screened due to a down syndrome older sister.
> This is far from a cure to genetic diseases it is removal of diseased individuals from the population
100% of down syndrome men and 30-50% of women are infertile. Throw in dating challenges and issue regarding consent and theses genes aren't going to last long anyway.
The box was opened 40 years ago at least, as a fetus I was screened due to a down syndrome older sister.
> This is far from a cure to genetic diseases it is removal of diseased individuals from the population
100% of down syndrome men and 30-50% of women are infertile. Throw in dating challenges and issue regarding consent and theses genes aren't going to last long anyway.
I think there is a pretty clear distinction, in that wide spread sex selective abortion results in a skewed gender population which causes obvious negative long term problems. It is very reasonable for a person to look at a society and say “we need increase the number of girls born”. We might have to discuss what is the best way to reach that goal but it is a reasonable goal to have. While I think saying “we need increase the number of people born with Down Syndrome” is never a morally defensible position.
I don't think anyone's arguing "we need increase the number of people born with Down Syndrome". It's instead asking ourselves if we intend to consciously terminate the lives of those who could still live meaningful lives regardless of whether or not they have it. I don't think "we should decrease the number of people born with Down Syndrome" is a morally defensible position in and of itself either.
You seriously don't think "we should decrease the number of people born with Down Syndrome" is a morally defensible position either?
I don't think "we should decrease the number of people born homosexual" is a morally defensible position, but decreasing incidence of Down Syndrome, or autism, or Fetal Alcohol Syndrome, are absolutely morally defensible positions, and in fact, are regularly done -- people everywhere socially discourage pregnant mothers from drinking alcohol, for example, and I don't think the discouraging third-parties are the ones who are in the wrong in that situation.
I think having a child AT ALL, regardless of any other concerns, is an individual decision that should be made by mature, capable adults. I don't think it's necessarily a "morally defensible position" to have a third kid when you're struggling to take care of the previous two just because you belong to a religion that thinks prophylactics are immoral, and I would never, for example, judge a potential parent who decided to terminate a pregnancy because they were told it is unlikely their child will be born alive, and even if it is, would be unlikely to live for long.
I don't think "we should decrease the number of people born homosexual" is a morally defensible position, but decreasing incidence of Down Syndrome, or autism, or Fetal Alcohol Syndrome, are absolutely morally defensible positions, and in fact, are regularly done -- people everywhere socially discourage pregnant mothers from drinking alcohol, for example, and I don't think the discouraging third-parties are the ones who are in the wrong in that situation.
I think having a child AT ALL, regardless of any other concerns, is an individual decision that should be made by mature, capable adults. I don't think it's necessarily a "morally defensible position" to have a third kid when you're struggling to take care of the previous two just because you belong to a religion that thinks prophylactics are immoral, and I would never, for example, judge a potential parent who decided to terminate a pregnancy because they were told it is unlikely their child will be born alive, and even if it is, would be unlikely to live for long.
Yeah, I'm not arguing abortion is bad. I'm saying that we should deeply consider the morality of choosing to do it in such cases, because people with Down Syndrome or autism or other such differences can totally lead reasonably healthy and happy lives.
Nowhere did I claim that it is reasonable to "judge a potential parent who decided to terminate a pregnancy because they were told it is unlikely their child will be born alive" (in fact, I'm Polish and am horrified at the new law recently passed in the country in which I was born, which specifically intends to do away with this specific act).
I think it's fine if you can't support another kid because you can't support another kid. I think it's fine if your kid won't live because your kid won't live.
But people with Down Syndrome and autism do live. And I think we should strongly consider the morality of the situation before going down that road. If someone is already struggling enough as it is keeping their lives together and finds out that this is the case, I would at least say it's more defensible than otherwise, because it is indeed harder to provide for some kids. But all kids are hard to provide for in their own way, and perhaps that person shouldn't be having kids anyway if that's the case. After all, we can't ever test for everything; it's entirely possible still to have a kid with something that can't be tested.
And people do discourage pregnant mothers from drinking, because that's an easy step to take to ensure higher chances of a happy and healthy baby. It's a false equivalence to compare that to terminating a potential life.
I won't judge people for their decisions. They have their reasons for doing what they'll do. And I'm absolutely unabashedly pro-choice. And of course I would have a hard time dealing with hearing that my kid will end up having Downs or whatever. But I think there is an aspect of morality to consider here, and the plain-and-simple "we should decrease the number of people born with Down Syndrome", presented without exception (as you put it, "absolutely"), does not fit my view. It's too close to eugenics for my taste.
Nowhere did I claim that it is reasonable to "judge a potential parent who decided to terminate a pregnancy because they were told it is unlikely their child will be born alive" (in fact, I'm Polish and am horrified at the new law recently passed in the country in which I was born, which specifically intends to do away with this specific act).
I think it's fine if you can't support another kid because you can't support another kid. I think it's fine if your kid won't live because your kid won't live.
But people with Down Syndrome and autism do live. And I think we should strongly consider the morality of the situation before going down that road. If someone is already struggling enough as it is keeping their lives together and finds out that this is the case, I would at least say it's more defensible than otherwise, because it is indeed harder to provide for some kids. But all kids are hard to provide for in their own way, and perhaps that person shouldn't be having kids anyway if that's the case. After all, we can't ever test for everything; it's entirely possible still to have a kid with something that can't be tested.
And people do discourage pregnant mothers from drinking, because that's an easy step to take to ensure higher chances of a happy and healthy baby. It's a false equivalence to compare that to terminating a potential life.
I won't judge people for their decisions. They have their reasons for doing what they'll do. And I'm absolutely unabashedly pro-choice. And of course I would have a hard time dealing with hearing that my kid will end up having Downs or whatever. But I think there is an aspect of morality to consider here, and the plain-and-simple "we should decrease the number of people born with Down Syndrome", presented without exception (as you put it, "absolutely"), does not fit my view. It's too close to eugenics for my taste.
And we are not doing this with a lot of other factors?
Why would this be different than planed parenthood?
I'm also not following that we should draw the line here just because it can be missused when you draw the line further away.
I would even argue, that it is our duty to do tests as we have the means and therefore the responsibility to do so. We do know that nature is not perfect. We can't control everything before like the pill and everything while it grows (supplements, no work etc.) and after birth by helping babies which came out to early or operations etc.
Why would we control everything but not this specific aspect?
The general notion quite globally is, that an abortion before 3month is ethical okay for us as a society and this timeframe was not choosen through some random events. It probably evolved.
Why would this be different than planed parenthood?
I'm also not following that we should draw the line here just because it can be missused when you draw the line further away.
I would even argue, that it is our duty to do tests as we have the means and therefore the responsibility to do so. We do know that nature is not perfect. We can't control everything before like the pill and everything while it grows (supplements, no work etc.) and after birth by helping babies which came out to early or operations etc.
Why would we control everything but not this specific aspect?
The general notion quite globally is, that an abortion before 3month is ethical okay for us as a society and this timeframe was not choosen through some random events. It probably evolved.
> China's sex selective abortions [...] Nazi eugenics campaigns
Those are organizations in charge of the trolley lever. How about putting the would-be parents in charge and keeping the organizations out?
Those are organizations in charge of the trolley lever. How about putting the would-be parents in charge and keeping the organizations out?
The families that I know that have chosen to abort a fetus with Down's syndrome have all gone on to have additional children. Although we can't say for sure, had those families chosen not to abort, those additional children may not have been conceived or born. It seems somewhat contradictory to put a huge value on the potential life of an unborn fetus with Down's while not recognizing the second-order effects on those potential lives.
Prenatal testing is one of the few solutions to this "post-darwinian" world (not in the usual sense of the word) with its modern medicine that will result in mankind accumulating more and more genetic defects.
Though slightly more ethical from my point of view would be gene-editing to remove those defects, instead of just terminating the fetus.
Edit: Also I'm not talking about down syndrome specifically. There's a long list of genetic defects that modern medicine can correct for and thus removes evolutionary pressure (bad eyesight, allergies, etc.)
Though slightly more ethical from my point of view would be gene-editing to remove those defects, instead of just terminating the fetus.
Edit: Also I'm not talking about down syndrome specifically. There's a long list of genetic defects that modern medicine can correct for and thus removes evolutionary pressure (bad eyesight, allergies, etc.)
It's hard to imagine any kinda of gene editing doesn't inevitably lead to Gattaca type situation:
https://www.youtube.com/watch?v=lP1cCjBkWZU
The doctor's "best of you" argument ... it's hard for that not to be appealing.
https://www.youtube.com/watch?v=lP1cCjBkWZU
The doctor's "best of you" argument ... it's hard for that not to be appealing.
I would be glad.
It doesn't make me special or a more valuable individual that i have sleeping issues and nerve issues.
It doesn't make me special or a more valuable individual that i have sleeping issues and nerve issues.
I'm not sure you would have been 'selected' then.
It wouldn't matter to me as i would not exist. So what?
You wouldn't 'be glad'.
Sure, but the other guy would be.
You should check out the movie.
I think there's actually some legit questions about if we tailor folks to be X efficient or manage their potential and who they were made to be... that might have a profound impact on happiness and how we see ourselves, what freedoms we are allowed and etc.
I think there's actually some legit questions about if we tailor folks to be X efficient or manage their potential and who they were made to be... that might have a profound impact on happiness and how we see ourselves, what freedoms we are allowed and etc.
When you refer to Gattaca: it doesn't reflect our society very well.
While i like that movie very much, he still got on a spaceship having much worse physical abilities than all the others of his crew.
Also in this specific topic, i'm not talking about a human who is able to overcome most/all of his obstacles given at birth. I'm talking about me and all other humans who are not able to do so.
I would also argue that on an ethical level, you would require to make sure that every new human being has the best chance our society can provide for him/her. Like if technology is so far advanced, that you can just scan an embryo, you see why it would become much smaller or way too tall which would lead to medical issues and you could fix it with a press of a button, you would need to do it.
I would argue that not doing this, is the same thing as denying a preterm baby an incubator.
While i like that movie very much, he still got on a spaceship having much worse physical abilities than all the others of his crew.
Also in this specific topic, i'm not talking about a human who is able to overcome most/all of his obstacles given at birth. I'm talking about me and all other humans who are not able to do so.
I would also argue that on an ethical level, you would require to make sure that every new human being has the best chance our society can provide for him/her. Like if technology is so far advanced, that you can just scan an embryo, you see why it would become much smaller or way too tall which would lead to medical issues and you could fix it with a press of a button, you would need to do it.
I would argue that not doing this, is the same thing as denying a preterm baby an incubator.
>make sure that every new human being has the best chance our society can provide for him/her
And in doing so? Replace those that can't?
And in doing so? Replace those that can't?
"modern medicine that will result in mankind accumulating more and more genetic defects."
Citation needed...
A lot of autosomal recessive genetic disease is a result of humans reproducing within their in-group, making the likelihood of two carriers of the same variant having offspring with that expressed variant. BRCA1 / BRCA2 in the Ashkenazi Jewish population are a common example. Nothing about medical genetic testing will directly cause more genetic defects.
Citation needed...
A lot of autosomal recessive genetic disease is a result of humans reproducing within their in-group, making the likelihood of two carriers of the same variant having offspring with that expressed variant. BRCA1 / BRCA2 in the Ashkenazi Jewish population are a common example. Nothing about medical genetic testing will directly cause more genetic defects.
The problem is that every generation has new de novo mutations. Mostly they don't do anything, very rarely they're positive, but some are bad. It used to be that only half of children survived to adulthood which produced enough selective pressure to remove new deleterious mutations, but that thankfully doesn't happen anymore. This isn't a problem in the short term but if we don't introduce something like pre-natal selection we'll eventually wind up back in a situation where half of children don't survive to adulthood despite modern medicine.
I believe the comment is saying that medical genetic testing and selective abortion is necessary because modern medicine protects people with e.g BRCA1 or cystic fibrosis.
Eh, realistically human evolution has been driven by almost all sexual selection for most as long as we've been around.
> will result in mankind accumulating more and more genetic defects
Why?
Unless the Down Syndrome patients themselves have children, then there wouldn't be an evolutionary impact.
Why?
Unless the Down Syndrome patients themselves have children, then there wouldn't be an evolutionary impact.
I don't they are referring to DS patients. Just that Darwinian evolutionary processes only selects for traits that make an impact prior to reproductive age. If a trait isn't expressed until after you have kids (MS, Huntington's etc.) it becomes easier to pass it on. Also as more diseases become survivable due to treatments / science then it would be easier to pass those traits on as well.
Why wouldn’t the Down Syndrome patients themselves have children?
It's much, much, less likely. Half of women with down syndrome are infertile. If they do get pregnant they usually end with a miscarriage and there is a 50% chance the syndrome won't be passed down.
Homosapiens are a result of chromosomal fusion, so I would approach the claim of "accruing defects" with great skepticism. Nature is still selecting as evidence by inflicting a high miscarriage & infertility rate.
https://www.ndss.org/resources/sexuality/
https://www.merckmanuals.com/home/children-s-health-issues/c...
Homosapiens are a result of chromosomal fusion, so I would approach the claim of "accruing defects" with great skepticism. Nature is still selecting as evidence by inflicting a high miscarriage & infertility rate.
https://www.ndss.org/resources/sexuality/
https://www.merckmanuals.com/home/children-s-health-issues/c...
They generally do not, either due to defects of germ cell formation or just little sexual activity. "As of 2006, three instances of males with Down syndrome fathering children and 26 cases of females having children have been reported." https://www.fertstert.org/article/S0015-0282(06)03067-6/full...
Because most people with Down Syndrome are sterile
I believe most would choose not to take that step because they are well and truly cognisant of the level of responsibility and care required to raise a child with the same, or more extensive, needs as they themselves had. No one would know better than they would, and I have yet to meet a person with Downs that was stupid despite any manifest intellectual deficit.
That said, it is definitely immoral to forcibly prevent another human from having a child. Any debate on morality must focus on the decision the individual themselves must make.
That said, it is definitely immoral to forcibly prevent another human from having a child. Any debate on morality must focus on the decision the individual themselves must make.
Genetic disorders don't always express themselves, but can run in the family
Sure but there is a difference between a single gene disorder with a given inheritence pattern, and a trisomy which is a numerical chromosomal aberration.
Are you planning to make laws that will make it illegal for people with genetic defects to procreate? Seriously?
You are probably not aware of the fact that majority of Down sufferers cannot procreate. There is only a few recorded instances of Down sufferers having children.
That said, you can have mosaic aneuploidy (just some cells are affected), in that case, your life is likely to be more typical.
That said, you can have mosaic aneuploidy (just some cells are affected), in that case, your life is likely to be more typical.
That seems like a big jump from what they actually said.
I'm surprised to see how controversial this comment has been.
It's seems intuitive to me that as we are able to solve genetic defects with modern medicine, we'd begin seeing more and more of them. I imagine even bad teeth, or poor eyesight would have greatly reduced one's likelihood of surviving and reproducing in our not so distant evolutionary past, let alone something like Type 1 Diabetes, or a chronic heart condition.
That of course is just speculation though. Does anyone know of any studies indicating one way or the other? My quick search wasn't able to turn anything up.
It's seems intuitive to me that as we are able to solve genetic defects with modern medicine, we'd begin seeing more and more of them. I imagine even bad teeth, or poor eyesight would have greatly reduced one's likelihood of surviving and reproducing in our not so distant evolutionary past, let alone something like Type 1 Diabetes, or a chronic heart condition.
That of course is just speculation though. Does anyone know of any studies indicating one way or the other? My quick search wasn't able to turn anything up.
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>will result in mankind accumulating more and more genetic defects.
Is there any evidence that this is actually the case?
Is there any evidence that this is actually the case?
I read article that says most genetic defects get selected out in utero. Just managing to develop properly is the major test of fitness.
Opinion having read some eugenics books. The authors completely conflate developmental disorders with generic ones. And they also way over state the true amount of genetic diversity.
Opinion having read some eugenics books. The authors completely conflate developmental disorders with generic ones. And they also way over state the true amount of genetic diversity.
There always after-birth abortion, although that's probably a lot less ethical.
I disagree, not knowing and then terminating because of knowing can save so much suffering for the parent and child.
Just because before there was no way to check/filter, did not guarantee that child would have a chance to reproduce.
The removal or inclusion of genetic defects usually stops if you can't reproduce and ends the family line with that descendent full stop.
Just because before there was no way to check/filter, did not guarantee that child would have a chance to reproduce.
The removal or inclusion of genetic defects usually stops if you can't reproduce and ends the family line with that descendent full stop.
I find it fascinating how many comments argue that these lives aren't worth living in a forum that just a few days ago had a (albeit unscientific) poll that said that most of you are currently depressed. 55-45 when I checked it. I was surprised it wasn't higher.
This despite being a population that largely skews young, educated, healthy, high earning, highly sought after. We hold the power to insist that ours are the "Good Values". We are the beautiful people Marlyn Manson sung about.
And yet, a set of people who are largely unappreciative of the value of their own lives, are passing judgement the lives of the disabled.
Why do you think their lives aren't worth living?
This despite being a population that largely skews young, educated, healthy, high earning, highly sought after. We hold the power to insist that ours are the "Good Values". We are the beautiful people Marlyn Manson sung about.
And yet, a set of people who are largely unappreciative of the value of their own lives, are passing judgement the lives of the disabled.
Why do you think their lives aren't worth living?
That’s not what anybody is saying. Are you offering to pay for the extra millions in lifetime care and need for those children?
"That’s not what anybody is saying."
Read the comments carefully
" Are you offering to pay for the extra millions in lifetime care and need for those children"
Where in my comment do I suggest that I wouldn't support the Billions (with a B in the US, you're off by three orders of mag) needed? Yes. I believe that a healthy, just society that has any semblance of a future has a moral obligation towards its needy.
Question. Where does your prejudice (i.e. pre-judging) that I wouldn't support extra Billions come from?
Read the comments carefully
" Are you offering to pay for the extra millions in lifetime care and need for those children"
Where in my comment do I suggest that I wouldn't support the Billions (with a B in the US, you're off by three orders of mag) needed? Yes. I believe that a healthy, just society that has any semblance of a future has a moral obligation towards its needy.
Question. Where does your prejudice (i.e. pre-judging) that I wouldn't support extra Billions come from?
My parents were manipulated into having prenatal disability tests because of my mom's low amniotic fluid during my sister's pregnancy. Tests came back positive and the doctors recommended abortion. My parents were horrified, being pro-life. They endured a traumatic next few months and a premature delivery. That was 1989. My sister was fine but it left my parents with enduring resentment of doctors to this day.
My abortion "policy" has been that it should be illegal to knowingly put an unborn fetus in jeopardy (unless the mother's life is at risk of course) as soon as the pregnancy is known beyond reasonable doubt. I can't imagine any other policy that doesn't dance with eugenics.
I think that the government's prerogative should be facilitating adoption for the baby and mitigating the "unavoidable" inequity to the mother biology has put upon her.
I understand many disagree with the above, I only ask that you keep an open mind as I also try to do about one of the trickiest moral quandaries in the present age.
My abortion "policy" has been that it should be illegal to knowingly put an unborn fetus in jeopardy (unless the mother's life is at risk of course) as soon as the pregnancy is known beyond reasonable doubt. I can't imagine any other policy that doesn't dance with eugenics.
I think that the government's prerogative should be facilitating adoption for the baby and mitigating the "unavoidable" inequity to the mother biology has put upon her.
I understand many disagree with the above, I only ask that you keep an open mind as I also try to do about one of the trickiest moral quandaries in the present age.
This is what frustrates me as well. I know two people who were told that their children will have down syndrome with almost complete certainty, and their kids ended up completely fine, at least in this regard. We're on our third child and the screening and push to make a decision is at every appointment. On our first pregnancy, after the first ultrasound the doctor told us there was a "roughly 10%" chance she had down syndrome and asked us what we wanted to do. As if I'm going to kill my kid over a slim chance at disability determined by a grainy picture from a 10+ year old ultrasound machine operated by someone just trying to make it to their lunch break. I can't help but wonder how many parents terminate perfectly healthy children.
Doesn't low amniotic fluid result in premature delivery in anycase? The doctor will try to help you make it to 35 weeks but its often not possible. Also if i remember correctly, Doctors try to add amniotic fluid during delivery to avoid complication for the mother and the children (else it can be bloody and infection-prone).
Also, maybe i agree on principle that abortion should be a terrible choice (i've have not thought this through yet), but a lot of my friends or close family are educators/youth counselors (i have been one myself in another life) and even with a big social security net (unlike the US), some lives are just so unbelievably sad i sometime think we should tests the parent before allowing them to have a child. I'm joking, but some days, not really.
To put the pro-life choice into perspective, of the 4 girls present in the "foyer" i was working at ten years ago (google translate give me reception center or youth club, its an orphanage for 11yo+), the only one still alive was blowing guys in the toilets since she was 12. At least she was proactive and asked money for it. The other 3 died, one suicide at 14, the other two "accident" between 17 and 19 yo (they did not leave a note). I only have new from one of the 30 guys i was trying to help at the time, he is still living in the street at 23yo, my mother just got him to do the paperwork to get a social security card and taught him how to use the formation center locals to cook for himself, so i guess he is making steps, but he was one of those we had hope for when he was 14, so knowing he is in the street since he is 18 make me feel like a failure.
I'm pretty sure nobody really wants to know those exist, know their past, their mothers, fathers or stepfathers, but still, they exist. I can't be pro-life when i've seen them suffer, seen them kill themselves, either literally or with drugs. Or not being able to live at all. I've seen a boy with no autism, aged 6, act like a 3yo around noon and bedtime and having a lot of issue with urinating and defecating (i was specialized 3-6). Asked the director why. If this kid manage to pass the mental trauma his father inflicted him, the physical damages will stay with him for the rest of his life. Some people should never, ever be parents. The killing of foetus is inconsequential until we've fixed how we take care of our children. Or maybe sterilizing people is the way to go.
Also, maybe i agree on principle that abortion should be a terrible choice (i've have not thought this through yet), but a lot of my friends or close family are educators/youth counselors (i have been one myself in another life) and even with a big social security net (unlike the US), some lives are just so unbelievably sad i sometime think we should tests the parent before allowing them to have a child. I'm joking, but some days, not really.
To put the pro-life choice into perspective, of the 4 girls present in the "foyer" i was working at ten years ago (google translate give me reception center or youth club, its an orphanage for 11yo+), the only one still alive was blowing guys in the toilets since she was 12. At least she was proactive and asked money for it. The other 3 died, one suicide at 14, the other two "accident" between 17 and 19 yo (they did not leave a note). I only have new from one of the 30 guys i was trying to help at the time, he is still living in the street at 23yo, my mother just got him to do the paperwork to get a social security card and taught him how to use the formation center locals to cook for himself, so i guess he is making steps, but he was one of those we had hope for when he was 14, so knowing he is in the street since he is 18 make me feel like a failure.
I'm pretty sure nobody really wants to know those exist, know their past, their mothers, fathers or stepfathers, but still, they exist. I can't be pro-life when i've seen them suffer, seen them kill themselves, either literally or with drugs. Or not being able to live at all. I've seen a boy with no autism, aged 6, act like a 3yo around noon and bedtime and having a lot of issue with urinating and defecating (i was specialized 3-6). Asked the director why. If this kid manage to pass the mental trauma his father inflicted him, the physical damages will stay with him for the rest of his life. Some people should never, ever be parents. The killing of foetus is inconsequential until we've fixed how we take care of our children. Or maybe sterilizing people is the way to go.
I know of at least two families who got told by the doctor that they have to abort the fetus because if the Down syndrome test. Is there a financial benefit to the doctor? Why would they keep pressing on that? The baby was born okay.
Having a child is terrifying enough. Some folks might be up for the challenge of supporting a child with special needs for their entire life (or a good chunk of it), but I'm not afraid to say that it was a huge relief to know that my son had no known genetic abnormalities before he was born.
There's nothing to be ashamed of here.
There's nothing to be ashamed of here.
Seriously.
I've seen several families destroyed by the challenges involved in raising children with special needs, or rare diseases.
Having a nuero/genetically-typical child is a challenging full time job. Add in the prospect of it being a full triple-time job for their entire life, whether that's six years or 130 years and it's not likely to be remotely possible for the vast majority of families to sustain. Between the mandatory extra time commitments, lost pay, increased expenses, and the conversation changes. How could it not?
I've seen several families destroyed by the challenges involved in raising children with special needs, or rare diseases.
Having a nuero/genetically-typical child is a challenging full time job. Add in the prospect of it being a full triple-time job for their entire life, whether that's six years or 130 years and it's not likely to be remotely possible for the vast majority of families to sustain. Between the mandatory extra time commitments, lost pay, increased expenses, and the conversation changes. How could it not?
I had a coworker with a child with severe cerebral palsy, and the evident strain on him and his family was enormous. I couldn't believe they were effectively thrown on their own resources. I came to the opinion that people in that situation deserve all the help society can give them, including caregivers and even special living situations.
Anyone who has children runs that risk. And society needs children, unless you believe the human race should let itself die out.
Anyone who has children runs that risk. And society needs children, unless you believe the human race should let itself die out.
I have a daughter with Down's (we didn't know during pregnancy - actually, we didn't find out until she was almost 2!!), and my wife got NIPT tests on subsequent pregnancies. I don't know what we'd have done had either of them been positive, but at the very least we wanted to know beforehand.
Like you said, there's nothing to be ashamed of here.
Like you said, there's nothing to be ashamed of here.
> actually, we didn't find out until she was almost 2
I'm curious about this. I didn't realize that the condition could go undiagnosed long after birth!
I'm curious about this. I didn't realize that the condition could go undiagnosed long after birth!
It is very unusual. Most parents will find out during pregnancy, immediately after birth, or within a few weeks of birth.
In our case, somehow none of the health professionals noticed or said anything (yep, we seriously found out later that at least 3 of them suspected and said nothing - because it "wasn't within their remit"). Typical Down's facial features are not quite as prominent in our daughter, and developmentally, for a long time she tended to match her peers, or only lag behind a little. But coming on for 2 years, she still wasn't walking and her speech was lagging being, and we went to see a paediatrician - he recognised it immediately, and told us without even waiting on karyotyping. It was something of a shock :)
In our case, somehow none of the health professionals noticed or said anything (yep, we seriously found out later that at least 3 of them suspected and said nothing - because it "wasn't within their remit"). Typical Down's facial features are not quite as prominent in our daughter, and developmentally, for a long time she tended to match her peers, or only lag behind a little. But coming on for 2 years, she still wasn't walking and her speech was lagging being, and we went to see a paediatrician - he recognised it immediately, and told us without even waiting on karyotyping. It was something of a shock :)
That's astonishing. I think every mother over a certain age is offered a test here in Norway as a matter of course along with genetic counselling to make sure that she is able to make an informed decision once the result is known. This was the case for my children decades ago in Norway.
Mothers in the UK get rough statistics based on their age (e.g. you're told you have a 1 in 8000 chance of having a kid with Down's), and have the option of an amnio, which is invasive and carries a risk of miscarriage, so many will go off the stats alone.
NIPT has only been around for a few years, whereas amnio has been available for decades AFAIK, so I guess it's amnio that's been commonly been available in Norway too?
NIPT has only been around for a few years, whereas amnio has been available for decades AFAIK, so I guess it's amnio that's been commonly been available in Norway too?
Yes it was amnio.
They mention it in the article but we should really be calling this what it really is, 21st century eugenics.
It's not "changing who gets born and who doesn’t", it's killing the weak, the unwanted, the vulnerable.
It's saying that our lives have meaning and worth and dignity only so long as we are wanted and not a burden to others.
Few minds and opinions change on HN but I encourage anyone viewing this as a positive development of society to meet someone with down syndrome in person and ask if that person would be better off killed.
It's not "changing who gets born and who doesn’t", it's killing the weak, the unwanted, the vulnerable.
It's saying that our lives have meaning and worth and dignity only so long as we are wanted and not a burden to others.
Few minds and opinions change on HN but I encourage anyone viewing this as a positive development of society to meet someone with down syndrome in person and ask if that person would be better off killed.
> I encourage anyone viewing this as a positive development of society to meet someone in person with down syndrome in person and ask themselves if that person would be better off killed.
I have a daughter with Down's (I've posted a couple times in this thread already), but I still view this as a positive development.
I love my daughter dearly, and would die for her if need be - and I don't see any contradiction with this; I don't want my daughter to have Down's and the additional possibility of health issues that goes with it, or of course the inevitable societal issues. Her life is going to be a lot harder than that of a typical person, and of course it has been and will continue to be tough on her parents.
But this isn't about parents killing their existing children, it's about allowing future parents to make a choice whether to bring someone with possibly very severe disabilities into the world.
I have a daughter with Down's (I've posted a couple times in this thread already), but I still view this as a positive development.
I love my daughter dearly, and would die for her if need be - and I don't see any contradiction with this; I don't want my daughter to have Down's and the additional possibility of health issues that goes with it, or of course the inevitable societal issues. Her life is going to be a lot harder than that of a typical person, and of course it has been and will continue to be tough on her parents.
But this isn't about parents killing their existing children, it's about allowing future parents to make a choice whether to bring someone with possibly very severe disabilities into the world.
'killed'. Abortion is not killing.
Our society defines it as okay. You apparently don't agree with this but you are not the majority here.
No human aborts a fetus for fun.
My wife and i lost our 'fetus' on the 3 month mark. There have been a lot of thoughts about this experience and lots of emotions. And i would probably abort a fetus with Down Syndrom.
No one is doing an abortion easy. It is never easy for whatever reason and its not your place to criticize it when its not your responsibility.
You have to understand one thing: People are able to seperate the wish of not having a kid with down syndrom from other human beings who have down syndrom.
Our society defines it as okay. You apparently don't agree with this but you are not the majority here.
No human aborts a fetus for fun.
My wife and i lost our 'fetus' on the 3 month mark. There have been a lot of thoughts about this experience and lots of emotions. And i would probably abort a fetus with Down Syndrom.
No one is doing an abortion easy. It is never easy for whatever reason and its not your place to criticize it when its not your responsibility.
You have to understand one thing: People are able to seperate the wish of not having a kid with down syndrom from other human beings who have down syndrom.
Posts like this confuse me. It is absolutely killing a human. This is a scientific fact. The moral question is whether or not they are a person, or otherwise, whether or not they deserve rights, at various points of development, and apparently, any medical conditions they have or may have in the future, based on probabilities from current medical research.
its not. You can think you define it like this, but our society is not killing humans when we abort.
https://en.wikipedia.org/wiki/Homicide https://en.wikipedia.org/wiki/Fetus
" The other question related to the beginning of human life is even more difficult to answer. It is the fertilization of the egg cells; but a conglomeration of cells in the early phase of pregnancy can hardly be characterized as a human person. The human identity, personality, and worth is associated with the functioning of the brain, so only when the brain is fully developed can there be any talk about an unborn human being." https://pubmed.ncbi.nlm.nih.gov/7476658/
Just because you say 'It is absolutly killing a human' your statement is wrong.
https://en.wikipedia.org/wiki/Homicide https://en.wikipedia.org/wiki/Fetus
" The other question related to the beginning of human life is even more difficult to answer. It is the fertilization of the egg cells; but a conglomeration of cells in the early phase of pregnancy can hardly be characterized as a human person. The human identity, personality, and worth is associated with the functioning of the brain, so only when the brain is fully developed can there be any talk about an unborn human being." https://pubmed.ncbi.nlm.nih.gov/7476658/
Just because you say 'It is absolutly killing a human' your statement is wrong.
Except those links are exactly my point. "Human" is a species of intelligent animals. "Person", is an entity typically associated with traits humans have. They are different things and the distinction is important. The purpose of your "dehumanizing" language is to detract from the "personhood" being debated.
Nope; I don't need to discuss the 'personhood'.
I'm clearly fine with abortion before the 3th month.
And no if you wanna have it clarified: I think a human being is more than just a small or big blob of cells
My opinion did not change after we lost our 'fetus' in the 3th month. And no seeing a small body lying there was not a nice experience.
I'm clearly fine with abortion before the 3th month.
And no if you wanna have it clarified: I think a human being is more than just a small or big blob of cells
My opinion did not change after we lost our 'fetus' in the 3th month. And no seeing a small body lying there was not a nice experience.
Given the grammar mistakes, I'm assuming English is not your first language, and you aren't properly understanding what I'm saying. It's fine if you don't want to engage, but if you are going to engage, please do so in good faith, seeking to understand the other person as completely as possible, particularly if you are working against a language barrier. I had assumed you were being disingenuous/willfully ignorant before, but I doubt that now, my apologies for making that assumption.
You still can try to clarify what you are trying to say instead of being dismissive.
Let me try to reword it:
Yes it is a human fetus; Its not a human being.
Let me try to reword it:
Yes it is a human fetus; Its not a human being.
There is a common theme among people who argue over abortion; they choose particular words that are either unscientific or misleading, in a disingenuous way, to promote their side as being more rational. My initial assumption is that you were doing this, and you may still be, I'm giving you the benefit of the doubt. I feel it is very important that when we discuss abortion, we do so in a way that is scientific, rational, and consistent.
Your choice of words is particularly egregious, in my opinion. Killing is not the same as homicide. Human is not the same as person. A fetus is not a clump of cells, or a baby.
A "human being" is just a human (a common usage scientific term), and human is just a species of animal. So yes, a "human fetus" is a "human being". "Person" is a legal/philosophical term, not necessarily a scientific one. "Killing" simply refers to ending the life of a living thing. "Homicide" (the mention of which you removed?) is a legal term for killing a person. To drive this point home further, we have concepts for non-human persons, and non-person humans. They aren't interchangeable in all contexts.
The scientific reality and proper usage of the English language is abortion is killing humans (human fetuses). This is not up for debate. The debate is whether these humans are "persons", which entitles them to rights, or if they are not, if they deserve rights in some other capacity (e.g. my dog isn't a person but has rights).
Again, when people say "it's not killing" or "it's not a human", or tangentially, "it's a clump of cells" or "it's a baby" they are factually wrong and are deliberately misusing those words in an attempt to strengthen their argument, when in reality it makes them look either dishonest or ignorant.
To me, your posts are either dishonest, or ignorant. That was my entire point.
Your choice of words is particularly egregious, in my opinion. Killing is not the same as homicide. Human is not the same as person. A fetus is not a clump of cells, or a baby.
A "human being" is just a human (a common usage scientific term), and human is just a species of animal. So yes, a "human fetus" is a "human being". "Person" is a legal/philosophical term, not necessarily a scientific one. "Killing" simply refers to ending the life of a living thing. "Homicide" (the mention of which you removed?) is a legal term for killing a person. To drive this point home further, we have concepts for non-human persons, and non-person humans. They aren't interchangeable in all contexts.
The scientific reality and proper usage of the English language is abortion is killing humans (human fetuses). This is not up for debate. The debate is whether these humans are "persons", which entitles them to rights, or if they are not, if they deserve rights in some other capacity (e.g. my dog isn't a person but has rights).
Again, when people say "it's not killing" or "it's not a human", or tangentially, "it's a clump of cells" or "it's a baby" they are factually wrong and are deliberately misusing those words in an attempt to strengthen their argument, when in reality it makes them look either dishonest or ignorant.
To me, your posts are either dishonest, or ignorant. That was my entire point.
> The scientific reality and proper usage of the English language is abortion is killing humans (human fetuses). This is not up for debate.
Killing <animal> and killing <animal> fetus is not a an equivalence in animal medicine.
https://www.merckvetmanual.com/reproductive-system/abortion-...
I do not subscribe to your belief that there is no debate, with that assertion.
Killing <animal> and killing <animal> fetus is not a an equivalence in animal medicine.
https://www.merckvetmanual.com/reproductive-system/abortion-...
I do not subscribe to your belief that there is no debate, with that assertion.
To kill simply means to put a living thing to death. A fetus (human or otherwise) is a living thing. I don't know what the purpose of your link was, or how it has anything to do with the misuse of words above. Unless you think I'm implying that all forms of killing are the same, which obviously I'm not. That being said "killing <animal> fetus" is merely a subset of "killing <animal>" by basic logic. Were you implying otherwise by citing that link?
> That being said "killing <animal> fetus" is merely a subset of "killing <animal>" by basic logic.
No, that is not logical. Killing a caterpillar is not killing a butterfly. Known forms of life are not absolute in classification. You have decided to classify a fetus as a subset and others do not. Good luck with whatever.
No, that is not logical. Killing a caterpillar is not killing a butterfly. Known forms of life are not absolute in classification. You have decided to classify a fetus as a subset and others do not. Good luck with whatever.
"Foeticide (or feticide) is the act of killing a fetus, or causing an abortion."
Abortion stops a pregnancy and a pregnancy is the production of a human life.
You are also not killing sperm by using a tissue, neither do you kill an egg.
You also don't kill an embryo as those things are not alive.
Just because a biological mechanism started doing what it is programmed to do, doesn't make it alive.
Would you argue that a virus is alive?
When do you draw your line of a biological machine becoming alive?
Abortion stops a pregnancy and a pregnancy is the production of a human life.
You are also not killing sperm by using a tissue, neither do you kill an egg.
You also don't kill an embryo as those things are not alive.
Just because a biological mechanism started doing what it is programmed to do, doesn't make it alive.
Would you argue that a virus is alive?
When do you draw your line of a biological machine becoming alive?
You insistence on using scientific terms is misplaced in this case, as definitions are imprecise. This is not axiomatic geometry we are talking about.
For example, by some definition of species, many people with Down Syndrome do not belong to homo sapiens or any species really, due to inability to reproduce.
The closest definition you seek is DNA matching arguably is not favorable either because the syndrome causes severe DNA structure difference.
For example, by some definition of species, many people with Down Syndrome do not belong to homo sapiens or any species really, due to inability to reproduce.
The closest definition you seek is DNA matching arguably is not favorable either because the syndrome causes severe DNA structure difference.
Forgive me for thinking "kill" and "human" are grade school vocab words with clear definitions. I really don't feel like I'm being too pedantic here (maybe a little, but for good reason). I think the biased and incorrect way people speak when discussing abortion is ridiculous and isn't conducive to healthy conversation. If there were pro-lifers in this thread talking about a genocide two orders of magnitude bigger than the holocaust I'd be talking them down too.
> To me, your posts are either dishonest, or ignorant.
> incorrect way people speak
You bubble about scientific definition, and call people. And yet pose no real argument.
> incorrect way people speak
You bubble about scientific definition, and call people. And yet pose no real argument.
A human foetus w/o personality or any human trait, or a person that have a life to live and don't want to forcibly stay attached to that violonist for 9 months, i think i'm pretty okay with killing the foetus and everyone should be too.
> They mention it in the article but we should really be calling this what it really is, 21st century eugenics.
No, we shouldn't call it that because that's not what it is.
https://en.wikipedia.org/wiki/Eugenics
> In this period, people from across the political spectrum espoused eugenic ideas. Consequently, many countries adopted eugenic policies, intended to improve the quality of their populations' genetic stock. Such programs included both positive measures, such as encouraging individuals deemed particularly "fit" to reproduce, and negative measures, such as marriage prohibitions and forced sterilization of people deemed unfit for reproduction. Those deemed "unfit to reproduce" often included people with mental or physical disabilities, people who scored in the low ranges on different IQ tests, criminals and "deviants", and members of disfavored minority groups.
The key element, here, is that eugenics involves the state controlling the rights of the individual to reproduce in the first place.
In this case we're dealing with the exact opposite: providing additional information in support of a person's right to make a decision about whether they shouldn't reproduce.
I would make the claim that, given a positive test for a genetic disorder, forcing a person to bring that fetus to term is in fact far closer to the troubling elements of the eugenics movement--a direct intervention by the state in a person's reproductive decisions--than the current situation.
No, we shouldn't call it that because that's not what it is.
https://en.wikipedia.org/wiki/Eugenics
> In this period, people from across the political spectrum espoused eugenic ideas. Consequently, many countries adopted eugenic policies, intended to improve the quality of their populations' genetic stock. Such programs included both positive measures, such as encouraging individuals deemed particularly "fit" to reproduce, and negative measures, such as marriage prohibitions and forced sterilization of people deemed unfit for reproduction. Those deemed "unfit to reproduce" often included people with mental or physical disabilities, people who scored in the low ranges on different IQ tests, criminals and "deviants", and members of disfavored minority groups.
The key element, here, is that eugenics involves the state controlling the rights of the individual to reproduce in the first place.
In this case we're dealing with the exact opposite: providing additional information in support of a person's right to make a decision about whether they shouldn't reproduce.
I would make the claim that, given a positive test for a genetic disorder, forcing a person to bring that fetus to term is in fact far closer to the troubling elements of the eugenics movement--a direct intervention by the state in a person's reproductive decisions--than the current situation.
Consider the parent that you are forcing to raise a child that requires a significant amount of work. It's better to have wanted children. Unwanted children will suffer in different ways.
Are you against abortion in general, or just for people with Downs?
Hmm, so the testing isn't high sensitivity? It appears that the initial couple had the foetus tested and then did not abort but found that they had a child with Down Syndrome in the end. Interesting.
I think that there are two tests. First there is a non invasive test that can be done to evaluate if the foetus is "at risk" of Downs. Then there is a sampling one that is very specific. Basically counting the chromosomes. But the catch is that the specific test carries a risk to the pregnancy - so it's not applied without cause. As well as the sensitivity issue in the article there is also a specificity issue.
My daughter was tested (non invasively) as at high risk of downs (the doctor said 50/50) we decided we didn't care... lo and behold: she doesn't have downs. I don't know enough about the area to make judgements, but I am definitely concerned that it's not a slamdunk that the doctors are getting this right.
There is a huge agenda of control around pregnancy in the UK - our consultant was so arsey about us not doing the follow-up that I had to get him changed out (it later turned out that he was struck off 2 years later for more or less murdering a woman and child, but that's another story).
My daughter was tested (non invasively) as at high risk of downs (the doctor said 50/50) we decided we didn't care... lo and behold: she doesn't have downs. I don't know enough about the area to make judgements, but I am definitely concerned that it's not a slamdunk that the doctors are getting this right.
There is a huge agenda of control around pregnancy in the UK - our consultant was so arsey about us not doing the follow-up that I had to get him changed out (it later turned out that he was struck off 2 years later for more or less murdering a woman and child, but that's another story).
There is a newer type of test, only very briefly mentioned in the article, and strangely not even by name: NIPT (Non-Invasive Prenatal Testing).
It works by testing tiny amounts of the baby's DNA that can be found in the mother's blood. It is close to 100% effective for detecting Down's Syndrome.
It needs only a blood sample, so carries no meaningful risk for mother or fetus, but it's more expensive than the older amnio or sampling methods, so is usually only available privately (at least in the UK).
It works by testing tiny amounts of the baby's DNA that can be found in the mother's blood. It is close to 100% effective for detecting Down's Syndrome.
It needs only a blood sample, so carries no meaningful risk for mother or fetus, but it's more expensive than the older amnio or sampling methods, so is usually only available privately (at least in the UK).
This test is widely available in the US from e.g., Counsyl[1]. It's pretty amazing how many conditions they are able to check for with just a sample of the mother's blood; it's not just Down's but virtually any chromosomal abnormality. Our care provider strongly recommended it due to our risk factors.
https://prenatalscreening.com/
https://prenatalscreening.com/
Thanks - that's really informative, it's great that things move on.
I think part of it is if you want a genetic sample you have to puncture the amniotic sack, which can cause complications.
This is not a new philosophical problem. We already know what the inherent tension is here. Do we value the sanctity of a human life over the greater social order?
Of course both answers to that question have very far reaching implications, and to answer one way or another almost always reveals oneself to be a hypocrite in some way. But instead of actually engaging with these hard questions we equivocate and try to build logical defenses that allow us to have our cake and eat it too.
Unfortunately with modern science and medicine we will be forced to reckon with the consequences of these unspoken choices soon or later. I don't pretend to know what is correct here, and I don't necessarily pass judgement on those who would answer these questions differently than I, but I do have large amounts of contempt for anyone who tries to ignore the realities of their positions and even more contempt for those who think the answer is obvious and self explanatory.
Of course both answers to that question have very far reaching implications, and to answer one way or another almost always reveals oneself to be a hypocrite in some way. But instead of actually engaging with these hard questions we equivocate and try to build logical defenses that allow us to have our cake and eat it too.
Unfortunately with modern science and medicine we will be forced to reckon with the consequences of these unspoken choices soon or later. I don't pretend to know what is correct here, and I don't necessarily pass judgement on those who would answer these questions differently than I, but I do have large amounts of contempt for anyone who tries to ignore the realities of their positions and even more contempt for those who think the answer is obvious and self explanatory.
This is personal for me, we are just undergoing IVF treatment. We opted to have all embryos biopsied and checked for aneuploidies (Down Syndrome is a form of aneuploidy). Sure enough, some were aneuploid, though almost certainly non-viable.
I could not, in good faith, deliberately bring a child with Down syndrome to this world. Just could not.
I could not, in good faith, deliberately bring a child with Down syndrome to this world. Just could not.
Same here. And nothing wrong with that choice at all. Others are free to plan their families as they please.
Special attention must be given to evaluating the morality of prenatal diagnostic techniques which enable the early detection of possible anomalies in the unborn child. In view of the complexity of these techniques, an accurate and systematic moral judgment is necessary. When they do not involve disproportionate risks for the child and the mother, and are meant to make possible early therapy or even to favour a serene and informed acceptance of the child not yet born, these techniques are morally licit. But since the possibilities of prenatal therapy are today still limited, it not infrequently happens that these techniques are used with a eugenic intention which accepts selective abortion in order to prevent the birth of children affected by various types of anomalies. Such an attitude is shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of "normality" and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well. And yet the courage and the serenity with which so many of our brothers and sisters suffering from serious disabilities lead their lives when they are shown acceptance and love bears eloquent witness to what gives authentic value to life, and makes it, even in difficult conditions, something precious for them and for others.
— John Paul II, Evangelium Vitae, 63
http://www.vatican.va/content/john-paul-ii/en/encyclicals/do...
http://www.vatican.va/content/john-paul-ii/en/encyclicals/do...
I hope I'm not following the argument, because it sounds like he thinks we should have other people around 'suffering with serious disabilities' so we can be reminded how precious life is. If so, that's cruel to the point of perversity.
It's saying that if we terminate base on a disability we are preventing that person from a chance a life based on the assumption that it would be better not to exist rather than have the disability in question. Those born with these disabilities might disagree and they might see such an action as a judgement against their own existence. This further adds to their suffering.
Only if you assume its relevant.
Its not relevant when your society defines abortion before 3 month okay, which plenty do and i agree with.
If we would see it different, than it would be murder.
Its not relevant when your society defines abortion before 3 month okay, which plenty do and i agree with.
If we would see it different, than it would be murder.
This other comment throws up an interesting twist on that:
https://news.ycombinator.com/item?id=25140048
Once we are talking about counterfactuals, that is things like "would haves" about people who don't exist but could have, it opens the door to considering other people who don't exist but could have.
Under the assumption that a family who proceeds with the Downs foetus to birth has fewer children afterwards, ought we not to consider the later children who might not exist as part of this moral equation too?
What if a family who proceeds with the Downs foetus to birth is likely to have multiple fewer children after than they would have had?
Some people born with disabilities might disagree - and have every right to disagree - and see the action of abortion as a judgement against their own existence. But in doing so, are they not identifying themselves more with the counterfactual Downs foetus than with the counterfactual non-Downs foetus?
If so, does that not suggest people who think that way identify themselves with the disability to some degree ("In that world I would have been aborted"), rather than identifying themselves as people independent of a physical characteristic ("In that world I would have been guaranteed my body would not have this disability")?
https://news.ycombinator.com/item?id=25140048
Once we are talking about counterfactuals, that is things like "would haves" about people who don't exist but could have, it opens the door to considering other people who don't exist but could have.
Under the assumption that a family who proceeds with the Downs foetus to birth has fewer children afterwards, ought we not to consider the later children who might not exist as part of this moral equation too?
What if a family who proceeds with the Downs foetus to birth is likely to have multiple fewer children after than they would have had?
Some people born with disabilities might disagree - and have every right to disagree - and see the action of abortion as a judgement against their own existence. But in doing so, are they not identifying themselves more with the counterfactual Downs foetus than with the counterfactual non-Downs foetus?
If so, does that not suggest people who think that way identify themselves with the disability to some degree ("In that world I would have been aborted"), rather than identifying themselves as people independent of a physical characteristic ("In that world I would have been guaranteed my body would not have this disability")?
He thinks that we should treasure all life as precious, not only the healthiest and strongest.
Yet this attitude rarely comes with systemic care for those born with handicaps, so actually it is a form of classist cruelty.
There is no shortage of suffering, we don't need to choose to create more.
There is no shortage of suffering, we don't need to choose to create more.
Yeah, because the Catholic Church never did anything to help folks that are handicapped, sick, or poor....
> Next to the federal government, Catholic Charities is the largest US social-safety-net provider.
https://en.wikipedia.org/wiki/Catholic_Charities_USA
> Next to the federal government, Catholic Charities is the largest US social-safety-net provider.
https://en.wikipedia.org/wiki/Catholic_Charities_USA
Do you really want to do tennis with how much good/bad the catholic church has done? Good that they provide some hospitals, but not a replacement for good government policy.
Lol wut? Nobody is trying to go all John Stewart Mill here. Just observing that there are reasons to question the assertion that people who agree with JPII don't care about the sick, poor, and handicapped.... SMH
Ah yes, the pope that as now comes to light has protected pedophiles in the church for decades. Really the authority we should all look up to.
(1) JPII was one of the great moral thinkers of the 20th century and I highly recommend that you read some of his work. Not only a thinker, he may be the single man most responsible for the fall of the USSR.
(2) The human institution of the Church, especially where wealthy, is highly corrupt and I say that as a devout Catholic who believes Christ established the Catholic Church as His church (tldr the human & divine Church are separate things).
(3) One of the likely reasons that Benedict abdicated was that he did not want to be "taken advantage of" as he saw various Vatican higher-ups do with the aging and frail JPII.
(4) JPII sadly dismissed cases of allegations. One thing to keep in mind though is when he was growing up in Nazi and then Soviet occupied Poland he would see the occupying forces falsely accuse "resistance" figures of abuse in order to hobble their reputation.
(5) While JPII did make mistakes, it is also my belief that many Vatican figures still-living use him as a scapegoat to hide their own errors. They are doing their best to hide any and all investigation and purely say "this is the fault of people who are now dead." They do not want any oversight. For example, why did they choose to finally release the long-awaited report on Cardinal McCarrick, the most prominent US abuser, the week of the presidential election in the US? Aiming to have it buried!
(2) The human institution of the Church, especially where wealthy, is highly corrupt and I say that as a devout Catholic who believes Christ established the Catholic Church as His church (tldr the human & divine Church are separate things).
(3) One of the likely reasons that Benedict abdicated was that he did not want to be "taken advantage of" as he saw various Vatican higher-ups do with the aging and frail JPII.
(4) JPII sadly dismissed cases of allegations. One thing to keep in mind though is when he was growing up in Nazi and then Soviet occupied Poland he would see the occupying forces falsely accuse "resistance" figures of abuse in order to hobble their reputation.
(5) While JPII did make mistakes, it is also my belief that many Vatican figures still-living use him as a scapegoat to hide their own errors. They are doing their best to hide any and all investigation and purely say "this is the fault of people who are now dead." They do not want any oversight. For example, why did they choose to finally release the long-awaited report on Cardinal McCarrick, the most prominent US abuser, the week of the presidential election in the US? Aiming to have it buried!
And still the church contains pedophiles and homophobes.
We have to see it as a whole thing and as a whole is negative.
We have to see it as a whole thing and as a whole is negative.
I'm Polish, for the entirety of my childhood and teenage years the man was revered more than Jesus himself. In Poland he's beyond Saint, you can't speak ill of him. And yes, I'm aware of his contribution to the fall of communism and fall of communism in Poland in particular - his election as a Pole was specifically designed to achieve that goal after all, communist government really didn't know what to do about it and it strengthened the Polish church to such an incredible force they became completely untouchable and yes, could be seen as the leading reason for the eventual fall of communism.
However.
Despite the early life reverence, I feel that as a grown adult I do now see him in a completely different light - as a man put into a certain role which he has played correctly, and ultimately he has protected an institution that sheltered abusers, corruption, wealth and which ultimately is a cancer spreading over Poland right now, destroying the society from within.
Also not everything is about US - look what's happening in Poland with cardinal Dziwisz, the closest confidant of the pope - I always suspected he was a piece of shit after disobeying the direct testament of JP2 and making money off of it, but now it's been confirmed he's much much worse than just profiteering off a dead pope.
However.
Despite the early life reverence, I feel that as a grown adult I do now see him in a completely different light - as a man put into a certain role which he has played correctly, and ultimately he has protected an institution that sheltered abusers, corruption, wealth and which ultimately is a cancer spreading over Poland right now, destroying the society from within.
Also not everything is about US - look what's happening in Poland with cardinal Dziwisz, the closest confidant of the pope - I always suspected he was a piece of shit after disobeying the direct testament of JP2 and making money off of it, but now it's been confirmed he's much much worse than just profiteering off a dead pope.
I appreciate your reply and testimony!
The "image" of JPII is a conundrum. On the one hand, he was extremely charismatic and gave many, many people a very real hope and a sense of purpose during a desolate century. However, he was and is not Jesus and the "media Pope" is a problem the Church has been dealing with since. The Pope must travel and must smile, etc etc whereas we know a Pope certainly has his work cut out for him just in the Vatican. The Church has never taught that every image and utterance of the Pope is divinely wrought, but media has twisted us into an odd place. "You wouldn't dare criticize the Pope, would you? Look how holy and beautiful he is!". (By media and "us" I am referring to believing Catholics; obviously secular media has no problem criticizing the Pope). In the US there has been a marked shift since McCarrick in the laity for holding the bishops more accountable, which albeit it is proceeding at a much slower pace than any of us would like. But a dam has broken, thank God.
Regarding the US, I mentioned the American church & McCarrick as an example of still-living Vatican power-players shifting blame and it was not my intention to say such problems are unique to America. Indeed, Dziwisz and other players boil my blood like little else.
The "image" of JPII is a conundrum. On the one hand, he was extremely charismatic and gave many, many people a very real hope and a sense of purpose during a desolate century. However, he was and is not Jesus and the "media Pope" is a problem the Church has been dealing with since. The Pope must travel and must smile, etc etc whereas we know a Pope certainly has his work cut out for him just in the Vatican. The Church has never taught that every image and utterance of the Pope is divinely wrought, but media has twisted us into an odd place. "You wouldn't dare criticize the Pope, would you? Look how holy and beautiful he is!". (By media and "us" I am referring to believing Catholics; obviously secular media has no problem criticizing the Pope). In the US there has been a marked shift since McCarrick in the laity for holding the bishops more accountable, which albeit it is proceeding at a much slower pace than any of us would like. But a dam has broken, thank God.
Regarding the US, I mentioned the American church & McCarrick as an example of still-living Vatican power-players shifting blame and it was not my intention to say such problems are unique to America. Indeed, Dziwisz and other players boil my blood like little else.
This may be controversial, but I don't believe an unborn fetus has any inherent value outside of whatever feelings of hope and excitement it elicits in the parents. If those feelings are instead of dread and anguish, it should be terminated for the benefit of all.
The quote seems to imply there is value in the suffering of a disabled child and its parents - suffering for its own sake - which is absolutely horrific.
The quote seems to imply there is value in the suffering of a disabled child and its parents - suffering for its own sake - which is absolutely horrific.
> The quote seems to imply there is value in the suffering of a disabled child and its parents - suffering for its own sake - which is absolutely horrific.
I think it would be more accurate to say that the quote is asserting that human life has great value _regardless_ of the amount of suffering involved. (Or put another way, the total value of someone's life is not a function of the amount of suffering they experience.) Certainly this is a challenging worldview since naturally everyone wants to avoid suffering (or at least avoid suffering that does not help them achieve some goal). But at the same time it is hard to make the general assertion that people who have suffered greatly would have been better of not existing.
I am reminded of the story about Johannes Steinhoff [1], a German fighter pilot in WWII. Apparently after witnessing another pilot die horribly in a fire, he asked his friend to just kill him quickly if he ever ended up in a similar situation. As it turns out, Johannes was later a victim of a terrible explosion (even his eyelids were burned off). His friend literally drove to the hospital to shoot him and put him out of his misery, but was prevented from doing so by the medical staff. Johannes ended up recovering and went on to become a key player in the post-war German Air Force and the German Military Representative to the NATO Military Committee.
I don't quite know what to think of this story because on one hand I would not wish his ordeal on my worst enemy. But, on the other hand, it is hard to say that anyone would have been "better off" if his friend had killed him. Life is often what we choose to make of it and it is impossible to avoid all suffering. It seems like the best we can do is play the hand that we are dealt and try to regard all things outside of our control with equanimity.
1. https://en.wikipedia.org/wiki/Johannes_Steinhoff
I think it would be more accurate to say that the quote is asserting that human life has great value _regardless_ of the amount of suffering involved. (Or put another way, the total value of someone's life is not a function of the amount of suffering they experience.) Certainly this is a challenging worldview since naturally everyone wants to avoid suffering (or at least avoid suffering that does not help them achieve some goal). But at the same time it is hard to make the general assertion that people who have suffered greatly would have been better of not existing.
I am reminded of the story about Johannes Steinhoff [1], a German fighter pilot in WWII. Apparently after witnessing another pilot die horribly in a fire, he asked his friend to just kill him quickly if he ever ended up in a similar situation. As it turns out, Johannes was later a victim of a terrible explosion (even his eyelids were burned off). His friend literally drove to the hospital to shoot him and put him out of his misery, but was prevented from doing so by the medical staff. Johannes ended up recovering and went on to become a key player in the post-war German Air Force and the German Military Representative to the NATO Military Committee.
I don't quite know what to think of this story because on one hand I would not wish his ordeal on my worst enemy. But, on the other hand, it is hard to say that anyone would have been "better off" if his friend had killed him. Life is often what we choose to make of it and it is impossible to avoid all suffering. It seems like the best we can do is play the hand that we are dealt and try to regard all things outside of our control with equanimity.
1. https://en.wikipedia.org/wiki/Johannes_Steinhoff
And yet, people with Down’s syndrome are more happy than average person, so we cannot say that they suffer, and aborting baby with Down’s syndrome does not prevent baby suffering. I know that people with Down’s are more susceptible to certain illnesses but even with that they are happy. Source: my sister worked with peoplw with Downs.
It's a valid perspective, so I think the downvotes aren't in order. However I strongly disagree. Having Down syndrome isn't just being "outside the conventional parameters of of normality", it's a serious disease with life-altering implications. You will never surpass the cognitive capacity of a young child, you will have impaired vision and hearing, if you ever manage to speak at all, you will probably lose that ability at around 30 years of age. You will have a myriad other chronic and painful health problems, and then you will finally die at around age 40 (maybe more with enough high-quality support). This is not a life worth living, if I ever were in such a situation I would pray to be euthanised.
I'm afraid a lot of what you've said here is simply not true - it's either wofully outdated, or pure disinformation. Attitudes to Down's have changed a lot in recent decades, and children now get access to education and assistance, instead of being stuck in an institution to rot. As such, life outcomes are vastly different to what they used to be.
I have a daughter with Down's, so I probably know more about it that most.
> You will never surpass the cognitive capacity of a young child
This is just completely untrue.
> you will have impaired vision and hearing
There is certainly a higher incidence of vision and hearing problems in people with Down's, but it's far from guaranteed. Further more, glasses and hearing aids are a thing.
> if you ever manage to speak at all
I'm struggling to take you seriously now - this is utterly absurd.
> You will have a myriad other chronic and painful health problems
There is a higher incidence of some physical and mental illnesses in people with Down's, but again, it's far from guaranteed, and again need not have a large impact. For example, a lot of those born with Down's have a small hole in their heart, but nowadays it's fairly easily rectified. Not sure what "painful" health problems you could be referring to.
I have a daughter with Down's, so I probably know more about it that most.
> You will never surpass the cognitive capacity of a young child
This is just completely untrue.
> you will have impaired vision and hearing
There is certainly a higher incidence of vision and hearing problems in people with Down's, but it's far from guaranteed. Further more, glasses and hearing aids are a thing.
> if you ever manage to speak at all
I'm struggling to take you seriously now - this is utterly absurd.
> You will have a myriad other chronic and painful health problems
There is a higher incidence of some physical and mental illnesses in people with Down's, but again, it's far from guaranteed, and again need not have a large impact. For example, a lot of those born with Down's have a small hole in their heart, but nowadays it's fairly easily rectified. Not sure what "painful" health problems you could be referring to.
While it is a serious condition, most of your statements are simply not true. Life expectancy for Down syndrome is around 55 - 60 years old. I have a family member with Down's who is around 60 years old at the moment and despite his health issues, he is one of the happiest individuals I know. Not saying this goes for all afflicted people, but a blanket statement like 'not a life worth living' is just plain BS.
That sounds like a pretty severe expression of it, I don't know the distribution but I know people who don't have these limits.
I think there is a certain tension between on the one hand being against children being aborted for downs syndrome, but being OK with children with no detected abnormalities being aborted for lifestyle/career reasons.
At least not in germany.
Are extreme religous people okay with any abortion? Then there is no tension for them either and as far as i know, those are the more/real prominent examples of groups who saying something about this topic at all
Are extreme religous people okay with any abortion? Then there is no tension for them either and as far as i know, those are the more/real prominent examples of groups who saying something about this topic at all
There are many many examples of choices that it's OK to make unless it's for a bad reason - that's exactly what a protected class is about.
Pure eugenics. But it's ok for some reason this time.
You didn't cure Down Syndrome, you just killed its victims.
scop(1)
I would be more surprised if this were not true. It's not very PC to say, but quite simply being different is not inherently a moral good. Downs Syndrome in particular is more controversial, because people who have this disorder typically are happy in their lives. I've spent a not insignificant part of my life working with teenagers and adults with Downs Syndrome as a volunteer, and all of the people I've worked with have been cheerful and generally seem to have a high enjoyment factor in their lives. On the flip side, all of them required life-long assistance and care, never able to function completely independently, and lacking in almost all other meaningful quality of life factors.
It is entirely possible, without any dissonance whatsoever, to respect the autonomy and wonder of human life and the rights of people with disabilities, while also understanding that having children with debilitating permanent disabilities can be a heartbreaking exercise that drains you emotionally, mentally, and physically. Nobody reasonable wishes for their child to suffer from such a disability, so the moral implications of the shift towards prenatal screening and following abortion are more about the abortion than the rest of the conversation. Denmark, in particular, has a very open social view towards abortion, so the fact that abortion rates are so high when negative screening occurs is unsurprising. I'm sure the result would differ in other countries in proportion roughly to their social views on abortion.