Iceland’s Darkness: Eradicating Down Syndrome From Their Society
[guest post by Dana]
A long while back, I was strolling through a Disney Store during my lunch hour, and a young man turned and hugged me. Out of the blue. This perfect stranger with a big smile on his face then told me he loved me. I was so startled that I just stood there confused. In a moment, an older couple rushed over and gently pulled the young man away. They apologized to me for their son’s burst of affection, and explained that their son was an “exceptional hugger”. Why, yes, I could see that! Their son had Down syndrome. He loved everyone. Including lucky me. I had a pleasant conversation with the couple, and then said good-bye. I felt happy. It certainly wasn’t one of those Big Deal moments in life, but rather a small, quiet one. It was the kind that sneaks up on you, and you just know something pure and sweet just shot through the universe, momentarily cutting through the misery, and you just happen to be there, in the right place at the right time, to catch that shot of love and tuck it away in your heart.
That happy run-in came to mind when I read about Iceland’s near-eradication of Downs syndrome births. As if this modern-marvel of eugenics was something to cheer about:
Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.
While the tests are optional, the government states that all expectant mothers must be informed about availability of screening tests, which reveal the likelihood of a child being born with Down syndrome. Around 80 to 85 percent of pregnant women choose to take the prenatal screening test, according to Landspitali University Hospital in Reykjavik.
…
Using an ultrasound, blood test and the mother’s age, the test, called the Combination Test, determines whether the fetus will have a chromosome abnormality, the most common of which results in Down syndrome. Children born with this genetic disorder have distinctive facial issues and a range of developmental issues. Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.
…
With a population of around 330,000, Iceland has on average just one or two children born with Down syndrome per year, sometimes after their parents received inaccurate test results.
And while Iceland is witnessing Down syndrome children disappear from their landscape of life, I was shocked to read the statistics about such “termination rates” in other “civilized,” first-world nations:
According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it’s 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity — and Down syndrome is included in this category.
Geneticist Kari Stefansson offers his thoughts on his nation’s “progress,” observing that this is not just a medical decision being made. But if not medical, what? Something… moral? :
“My understanding is that we have basically eradicated, almost, Down syndrome from our society — that there is hardly ever a child with Down syndrome in Iceland anymore,” he said.
Quijano asked Stefansson, “What does the 100 percent termination rate, you think, reflect about Icelandic society?”
“It reflects a relatively heavy-handed genetic counseling,” he said. “And I don’t think that heavy-handed genetic counseling is desirable. … You’re having impact on decisions that are not medical, in a way.”
Stefansson noted, “I don’t think there’s anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals is a fairly complicated decision.”
Of course this compels one to ask, indeed, where does it end? And who gets to play God and decide how far is too far? But seemingly, for the vast majority of the people in Iceland, this quest to eradicate Downs syndrome births children has little to do with morality. At least that’s what they tell themselves. Consider counselor Helga Sol Olafsdottir, whom women turn to when discussing what they should do when they are informed that a chromosomal abnormality has been discovered:
Olafsdottir tells women who are wrestling with the decision or feelings of guilt: “This is your life — you have the right to choose how your life will look like.”
She showed Quijano a prayer card inscribed with the date and tiny footprints of a fetus that was terminated.
Quijano noted, “In America, I think some people would be confused about people calling this ‘our child,’ saying a prayer or saying goodbye or having a priest come in — because to them abortion is murder.”
Olafsdottir responded, “We don’t look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder — that’s so black and white. Life isn’t black and white. Life is grey.”
Eliminating the existence of Down syndrome births, hence babies, children and adults is the natural outcome of such a rationalization. If it isn’t seen as the engineered murder of one deemed less than acceptable, and seen only as a “possible life,” and an imperfect one at that, then it becomes quite easy to kill.
I once spent a short, precious amount of time in the presence of a lovely couple who unexpectedly found themselves thrust into one of those gray areas of which Olafsdottir speaks, and yet they didn’t hesitate to choose life. They did so because they believed that the unique individual the wife carried was fearfully and wonderfully made, and that they had been specifically chosen to provide the necessary arms of love to hold, the tender hearts to nurture, and the courage required for the special baby she carried. The reward of their chosen “suffering,” they would insist to Olafsdottir, was to experience a joy so profound that they never looked back with regret at choosing to bring that which was deemed imperfect into this world and into their lives. Because in his own unique way, their son brought a different kind of perfect to them: the kind that is seen in big, wide-open bursts of love offered to strangers.
(Cross-posted at The Jury Talks Back.)
–Dana
This is heartbreakingly sad.
Dana (023079) — 8/14/2017 @ 8:41 pmWhen I was an undergrad, I worked with Downs’ kids and autistic kids. I thought I wanted to be a genetic counselor. You just read why I am not.
Simon Jester (8aea69) — 8/14/2017 @ 8:56 pmTell me again how the default behavioral expectancy for man is benign and moral. We are ever so reasonable and rational. That religion stuff is just so much fantasy. Who needs it?
I’ve spent most of my life wondering why God shows our country any mercy or extends providence. My guess is it won’t be for much longer.
Thanks for this heartbreaking, important, and profound post, Dana.
Ed from SFV (3400a5) — 8/14/2017 @ 8:59 pmClose to a 100%, that is a startling figure.
narciso (d1f714) — 8/14/2017 @ 9:05 pmIceland’s Unique View On Marriage
Marriage seems to be optional in Iceland and unwed mothers are the norm. Bill Weir explores Iceland’s ideas of family on “The Wonder List,” Sunday at 10p.
Source: CNN
happyfeet (28a91b) — 8/14/2017 @ 9:07 pmWith a population of around 330,000, in a world of around 7 billion, Iceland represents nothing. It may as well be a setting for a domed colony on one of the moons of Jupiter in a dystopic science fiction novel, for all the significance it has to the rest of Humanity.
nk (dbc370) — 8/14/2017 @ 9:11 pmWhich means some “good” babies are aborted erroneously, too, right?
Oh well…eggs and omelettes!
Patricia (5fc097) — 8/14/2017 @ 9:12 pmThank you for this post, Dana. I, too, have had the profound pleasure of witnessing “something pure and sweet just shot through the universe.” The place in my heart where it dwells, still, is an anchor against a compass-less world.
felipe (023cc9) — 8/14/2017 @ 9:16 pmPatricia (5fc097) — 8/14/2017 @ 9:12 pm
Quite right.
felipe (023cc9) — 8/14/2017 @ 9:17 pmPersonal Story: When my (now ex-) wife was pregnant with our second child, she was given this test. Early 2000 and we received a phone call for her to go up to the larger regional hospital for further screening. We went up and were given the news that indications were that our unborn child had a chance at having Downs.
As I was aware of the test and the parameter margins I asked on what they were basing their maths on. They used the worst case numbers and achieved the result as given. I got them to move the date to the date we believed the deed that led to the successful conception was achieved and the chance dropped significantly. We asked on the viewing of the 13 week ultrasound and asked them to then factor in this date rather than their estimate. This result pushed the child o the normal probability of downs for a normal healthy naturally conceived child.
Only by knowing the actual parameters that they look for and having better knowledge on the conception date did we avoid taking the doctor’s advice. Advice she was standing by even when we stated we would be keeping the baby.
In the fullness of time, we brought our daughter into the world and she was not suffering from any birth defects. I worry that other families will abort healthy children all due to not knowing that 7 days difference significantly impacts on the odds of your unborn having Downs. 17 Years Later I still remember the pressure we were under from people who thought they knew everything. I would have not traded my Daughter in for anything, and I am glad I knew enough to make them do their work better. I feel sorry for those who did not.
Daniel (df5853) — 8/14/2017 @ 9:45 pmThank you for this article Dana. God bless.
NJRob (7f4bec) — 8/14/2017 @ 10:04 pmWere it not such an incredible imposition on personal liberty I would be fully in favor of requiring a parental license before a pregnancy would be allowed to carry to term. I would require that potential parents demonstrate both a stable relationship and the financial ability to support a child. I would actually go further and revert to a significance-fault-required model for divorce during the child’s minority.
But like I say, I see that model being such an incredible imposition on the individual that I can’t really support it despite how desirable I see the enterprise.
Soronel Haetir (86a46e) — 8/14/2017 @ 11:12 pmwow. my stomach went empty.
mg (31009b) — 8/15/2017 @ 4:11 amTo deal with the inaccuracy of some tests Iceland will pass a law permitting postpartum abortions. Once the Downs Syndrome problem is solved, black hair will be added to the list of deformities.
Jim (a9b7c7) — 8/15/2017 @ 5:26 amOne of the reasons I patronize the Home Depot I do is because they have a policy of hiring the disabled where possible, including mentally disabled.
They have two Down’s syndrome kids who do good work. They have a guy with some kind of hyperkinetic ADHD, a short skinny very strong fellow who can load a trailer with heavy stuff by himself. They even have a guy with something like Tourette’s – when not actually talking to a customer he talks loudly about his stream of consciousness.
Most of the regular customers and the staff have come to care for these people and enjoy working with them.
Fred Z (1e15d6) — 8/15/2017 @ 6:46 amGreetings:
Me, I’m thinking Iceland has plighted its troth to the Euro-Borg and all the latter’s Human Rights Courts are busy with other matters.
11B40 (6abb5c) — 8/15/2017 @ 7:15 amFrom what I read, Daniel, your story is not unusual. Many people report that their mothers were advised to abort them, and they refused. So bless you and your family!
//
Fred Z, we have several disabled folks who work at our local grocery stores. One guy was born in Asia. My Asian students said parents of such kids often come to America because we treat the children with respect and love. Confucianism teaches that such children are payback for something bad the ancestors did, so it’s tough there.
Patricia (5fc097) — 8/15/2017 @ 8:30 am“Eliminate Down syndrome” actually means “eliminating human beings who have Down syndrome”. Other diseases, like say smallpox, are not eliminated this way. We do not euthanize people diagnosed with cancer and then declare victory in the war on cancer.
Because Down syndrome is not inherited, this remedy will always need to be resorted to, if no ACTUAL way to prevent or treat it is ever found.
Frederick (64d4e1) — 8/15/2017 @ 8:53 amIt’s funny that Icelanders think “Americans” universally consider abortion to be murder, when our laws are interpreted to grant women abortion as a matter of Constitutional right, whereas in Iceland you need to have a diagnosis of deformity.
People see what they expect to see.
Frederick (64d4e1) — 8/15/2017 @ 8:55 amNext stop, achondroplasia.
Pinandpuller (975b5d) — 8/15/2017 @ 9:32 amIf they ever find a gay gene, all bets are off.
harkin (536957) — 8/15/2017 @ 9:42 am@19 Frederick – you either misread the original post, or . . . ??? . . .when you write that: Icelanders think “Americans” universally consider abortion to be murder . That said, I agree w/ you that oftentimes, People see what they expect to see.
By the bye, it’s inaccurate to state that abortion is available in Iceland only in case of foetal deformity (though overall, indeed, the legal limitations there are more restrictive than in the US.)
@18 Surely, you understand that the Icelandic practices in question do not result in the killing of birthed human beings . And that for hundreds of millions of folks, such practices cannot possibly constitute “euthanasia” in any sense (much less in its conventional sense). Which is not to say that the choice to abort or not is necessarily a “morally easy” one for any particular woman (or couple). And obviously, those whose religion forbids abortion and/or whose tenents hold a fetus to be on the same plane as a birthed human being, such folks may suffer greater pain on the whole in working through a decision of their own in difficult circumstances, and quite likely suffer greater pain in contemplating the decisions of others which are, in this regard, at odds with the tenents of their own faith. Peace be with you.
Q! (267694) — 8/15/2017 @ 9:54 amRush is talking about this right now.
Pinandpuller (975b5d) — 8/15/2017 @ 10:09 am@Q!:you either misread the original post
I suppose I did.
Surely, you understand that the Icelandic practices in question do not result in the killing of birthed human beings .
I do know that. But they do result in the killing of human beings. I’m not sure that anything is gained by pointing to “birthed” any more than it would be by saying it does not result in the killing of “healthy” human beings or “useful” human beings or “right-handed” human beings.
Most of the time we do not accept that eliminating the victims of an affliction as equivalent to eliminating the affliction. I find this lack of clarity about what exactly is being done, and what it means, convenient. Actually eliminating the affliction while sparing the lives of the afflicted would be much more work than this is.
Frederick (64d4e1) — 8/15/2017 @ 10:20 am@21 harkin
There is a bedazzled chromosome.
Pinandpuller (975b5d) — 8/15/2017 @ 11:08 amI don’t think it’s a coincidence that a lot of the food items on Fear Factor were normal Scandinavian fare.
Pinandpuller (975b5d) — 8/15/2017 @ 11:13 am@24 I’m not sure that anything is gained by pointing to “birthed” .
It’s not a question of gain or loss; it’s a question of understanding that there are many people who hold a view on the question which is at odds with yours — that there is a significant difference between a human fetus[fn 1] and a (birthed) human being. Folks who seem (at least many of them) to be moral creatures and who in fact seem to share a moral system overwhelmingly congruent with yours. And of understanding (or reaching to understand) why their views and yours are at odds, and how to make sense and/or come to peace with the resultant hodge-podge in an intellectually honest fashion. For you to declare (as you seem to do) that an abortion is invariably the killing of a human being. period. full stop. . . . well that seems, to me, to be a declaration which ultimately “gains” one very little indeed. But if in fact it gives you peace to so declare, good for you, and congratulations.
………
Q! (267694) — 8/15/2017 @ 12:00 pm[fn 1 – Or at least a “non-late-term fetus]
@Q!:an abortion is invariably the killing of a human being
Then what is it the killing of? Really, I’d like to know what you think is killed, if not a human being. But note that I never used the word “murder”. “Killing” and “murder” are not the same, and I never said where I stand on abortion.
What I DID do is insist that the “elimination” of Down syndrome be spelled out as what it is–the elimination of human beings afflicted with Down syndrome, and we never phrase it that way when we talk of eliminating smallpox, HIV, cancer, or malnutrition.
Frederick (c8a679) — 8/15/2017 @ 6:40 pm@Q!: I didn’t say, but you seem to think you know, so I will right now just disabuse you.
I do not find abortion morally objectionable at conception. I find it abhorrent at term. That’s about where most Americans are anyway.
But even though I do not object to abortion in every circumstance, I do insist we acknowledge that it is always and invariably the killing of a human being. Killing is sometimes morally justifiable, or at least excusable. That’s why we don’t put people in prison if they can be shown to have killed in self-defense.
Frederick (c8a679) — 8/15/2017 @ 6:46 pmThis is why I call them molochs minions substitute any Babylonian or phoenician
narciso (d1f714) — 8/15/2017 @ 6:48 pmdeity
@narcisco: Now be fair, the Moloch worshippers were killing birthed babies and that is just right out.
Unless you’re say, Steven Pinker.
Frederick (c8a679) — 8/15/2017 @ 6:54 pmLast year about a million American women were not set to prison after defending themselves.
Rev.Hoagie® (630eca) — 8/15/2017 @ 7:07 pm@Rev Hoagie: There are very few people who would try to characterize abortion as “self-defense”; I certainly was not. I used it as one example of the many flavors of homicide besides murder and self-defense, and we have different definitions and sanctions for them, because we recognize degrees of culpability and danger to the community.
Frederick (c8a679) — 8/15/2017 @ 7:11 pmI should come clear, I probably have more in common with Q! than he thinks, because we’re so damned tribal now that if you say one thing people think they know everything else you might say.
There are people who think meat is murder. I have argued with them about that, but it never would have occurred to me to say that meat does not involve killing an animal. Q! did not come right out and say that a fetus is not a human being, but he sure walked right up to saying that.
Frederick (c8a679) — 8/15/2017 @ 7:17 pmI’m not following you, Frederick. What *flavor* of homicide does abortion fall under? Since we’re recognizing the degrees of culpability who is culpable for performing an abortion? They say Dr. Gosnell aborted perhaps upwards of 70,000 fetus’ but he had not reached a point where he was a danger to the community until he killed a patient. Almost all of his abortions were black babies making him the number one perpetrator of black genocide in history. Probably a thousand times greater than the KKK.
Rev.Hoagie® (630eca) — 8/15/2017 @ 7:50 pm@29/30/35
Then what is it [an abortion] the killing of? Really, I’d like to know what you think is killed, if not a human being. [#29]
Q! did not come right out and say that a fetus is not a human being, but he sure walked right up to saying that. [#35]
For me (and I expect many others), a (“morally allowable”) abortion is the killing of something which is less than a human being. Some potentiality of a human being. Something along the lines of what Olafsdottir in the original post described as follows: We look at it as a thing that we ended. We ended a possible life that may have had a huge complication [Emphasis added]
It seems to me only because a non-late-term fetus is something well shy of being a human being, that the ending of its potentiality can be morally (or legally) borne. It is a thing (or a “being” or a quantity) so significantly different from a human being as we know human beings, that the termination of the vital processes which keep it “alive” is on a different moral and legal plane.
Perhaps, as you suggest, you and I share very similar views as to whether in case A, B, or C, abortion is morally allowable. And perhaps our differences as to whether (“allowable”) abortion is the killing of a human being (you – yes; how could it be otherwise? versus me – no; how could it possibly be so?) constitute some sort of mirror-dance whose steps (I do not fathom how) amounting to a “distinction without a difference” — as sometimes is stated, in matters legal.
Now, all that said (and not that it’s important in the least), I confess that am unaware of any legal (or moral) principles which would allow the killing of a “human being” as I understand that term, freely and for all intents and purposes unconditionally. Yet there are not a few societies that permit abortions freely at early stages – even States like Portugal (up to 10 weeks) – which has a strong and ancient religious tradition forbidding abortion. While I have not discussed this with any Portuguese, I would be surprised if they embraced such a philosophy/attitude, while at the same time they held that such an abortion effected the killing of a “human being”. Perhaps this is a lack of imagination on my part, but in any event, you likely (?) have a more complete notion of my position.
Q! (267694) — 8/15/2017 @ 8:41 pm@Rev Hoagie:What *flavor* of homicide does abortion fall under?
Its own. Homicide is killing a human. Abortion is that. But it can be done without culpability, under our laws, by the mother for any reason or none, but over which the father has no say and for which he or others who are not the mother can be held criminally liable. Although there are sometimes cracks in the coalition, who’d like to carve out gender-selective abortion, or LBGT abortion (if ever the condition can be detected in the womb) but can’t see how without endangering abortion-on-demand.
Frederick (c8a679) — 8/15/2017 @ 8:54 pm@Q!:something which is less than a human being
It would never occur to me to say that a cow killed for meat is less than a cow, and therefore it’s not immoral to kill it and eat it.
It is a thing (or a “being” or a quantity) so significantly different from a human being as we know human beings
Twenty days from conception, maybe, but not twenty days from term.
Yet there are not a few societies that permit abortions freely at early stage
There are societies that permit all sorts of things that you probably oppose and would call “murder”. Almost every human society has made rules about when it is or is not okay to kill humans. You can’t say that just because the killing is legal, the target is not considered human. At one time, in the West, killing a man in a fair fight was not a matter for the law, it was between you and his surviving relatives and it could be settled with money. “Murder” was originally secret killing.
Frederick (c8a679) — 8/15/2017 @ 9:04 pm@39 What a terribly disappointing, slip-shod and disingenuous response, Frederick! Heavens! I won’t make the mistake of engaging with you again, if I can possibly help it.
Q! (267694) — 8/15/2017 @ 9:24 pmIt’s easy to fall into the trap of equating crime with sin and law-abidingness with virtue. That if the government says it’s wrong it is the same as God saying it is wrong, and if the government approves then God also approves. (You may substitute “a transcendent morality” for God, if you wish.)
nk (dbc370) — 8/15/2017 @ 9:34 pmQ!:What a terribly disappointing, slip-shod and disingenuous response
Content-free string of adjectives…
Frederick (c8a679) — 8/15/2017 @ 9:46 pm@nk:It’s easy to fall into the trap of equating crime with sin and law-abidingness with virtue.
For a person who thinks so, “unjust law” is a contradiction in terms. Such an attitude is power-worship.
Frederick (c8a679) — 8/15/2017 @ 9:53 pmThank you for this article.
Ryan (29a5a4) — 8/15/2017 @ 11:21 pmbullet force games
It is estimated that in the US about two-thirds of the fetuses diagnosed as having Down’s Syndrome are aborted. The figure is higher in most European countries.
http://dailysignal.com/2017/08/15/iceland-aborting-nearly-babies-syndrome/
bob sykes (4eda30) — 8/16/2017 @ 4:51 amI am amused at how the leftists both in Iceland and here explain killing kids with Down Syndrome as virtually eliminating it. Well, duh. If you kill everybody who is blind you’ve eliminated blindness too.
Rev.Hoagie® (630eca) — 8/16/2017 @ 5:39 pm“something which is less than a human being”
Spoken as a true progressive sophist, straight from the eugenicist mold so beloved by Woodrow Wilson and Margaret Sanger. Are you an Antifa Klan member or just a deep sympathizer?
Rick Ballard (656c55) — 8/16/2017 @ 5:56 pm