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> Yet a gulf seems to separate the publicly expressed attitudes and private decisions. I would be more surprised if this were not true. It's not very PC to sa

> Yet a gulf seems to separate the publicly expressed attitudes and private decisions. 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.

gowld 6y ago
> meaningful quality of life factors. What are these?
- andrepd 6y ago
  Everything, from cognitive ability, to chronic health problems in vision, hearing, heart, diabetes, etc. And of course, the immense weight on caretakers.
- tristor 6y ago
  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.
- LatteLazy 6y ago
  That's the million dollar question here: is the Downs person's life worth more than the person (or people) they replace?
  - kwhitefoot 6y ago
    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.
GordonS 6y ago
> 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.
xupybd 6y ago
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.
- Fumtumi 6y ago
  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.
- RHSeeger 6y ago
  > 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.
- lotu 6y ago
  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.
e40 6y ago
that drains you emotionally, mentally, and physically Also financially. The level of care required isn't something that all people can afford.

gowld 6y ago

> meaningful quality of life factors. What are these?

andrepd 6y ago
Everything, from cognitive ability, to chronic health problems in vision, hearing, heart, diabetes, etc. And of course, the immense weight on caretakers.
tristor 6y ago
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.
LatteLazy 6y ago
That's the million dollar question here: is the Downs person's life worth more than the person (or people) they replace?
- kwhitefoot 6y ago
  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.

GordonS 6y ago

> 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.

xupybd 6y ago

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.

Fumtumi 6y ago
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.
RHSeeger 6y ago
> 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.
lotu 6y ago
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.

e40 6y ago

that drains you emotionally, mentally, and physically Also financially. The level of care required isn't something that all people can afford.