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.)
https://www.youtube.com/watch?v=lP1cCjBkWZU
The doctor's "best of you" argument ... it's hard for that not to be appealing.
It doesn't make me special or a more valuable individual that i have sleeping issues and nerve issues.
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.
Why?
Unless the Down Syndrome patients themselves have children, then there wouldn't be an evolutionary impact.
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.
Is there any evidence that this is actually the case?
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.
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.
http://www.vatican.va/content/john-paul-ii/en/encyclicals/do...
There is no shortage of suffering, we don't need to choose to create more.
> Next to the federal government, Catholic Charities is the largest US social-safety-net provider.
Getting thrown under the bus by the crowd who wrote it is a sure sign of sainthood.
(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!
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.
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 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.
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.
Also financially. The level of care required isn't something that all people can afford.
What are these?
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.
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.
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.
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.
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.
Those are organizations in charge of the trolley lever. How about putting the would-be parents in charge and keeping the organizations out?
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 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.
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.
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.
There's nothing to be ashamed of here.
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?
Anyone who has children runs that risk. And society needs children, unless you believe the human race should let itself die out.
Like you said, there's nothing to be ashamed of here.
I'm curious about this. I didn't realize that the condition could go undiagnosed long after birth!
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.
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.
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).
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).
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
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?
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?
I could not, in good faith, deliberately bring a child with Down syndrome to this world. Just could not.
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.
