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The Last Children of Down Syndrome

by arnoooooo on 11/18/20, 4:16 PM with 137 comments

• by tristor on 11/18/20, 5:45 PM

  > 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.

• by secabeen on 11/18/20, 6:02 PM

  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.

• by chmod775 on 11/18/20, 5:42 PM

  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.)

• by tosseuthansia on 11/18/20, 6:43 PM

  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?

• by chub500 on 11/18/20, 6:23 PM

  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.

• by mmastrac on 11/18/20, 5:44 PM

  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.

• by bennettfeely on 11/18/20, 6:14 PM

  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.

• by renewiltord on 11/18/20, 5:39 PM

  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.

• by pdeuchler on 11/18/20, 6:04 PM

  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.

• by inglor_cz on 11/18/20, 6:06 PM

  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.

• by michaelsbradley on 11/18/20, 5:28 PM

  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...

• by gadders on 11/18/20, 5:49 PM

  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.

• by beervirus on 11/18/20, 8:03 PM

  Pure eugenics. But it's ok for some reason this time.

• by Konohamaru on 11/19/20, 7:04 AM

  You didn't cure Down Syndrome, you just killed its victims.