August 16th, 2017

Iceland says down with Downs

With the advent of tests for Downs syndrome in utero and the availability of abortion, the future of Downs syndrome as a phenomenon has become a question mark. In the country of Iceland, for example, 100% of the women carrying babies revealed by amniocentesis to have Downs syndrome decide to abort. That means that Downs syndrome will become mostly a thing of the past in Iceland—although, since the test is not 100% accurate, a few Downs syndrome babies slip through the cracks every year.

Statistics in this country are different, with an estimated termination rate of 67%.

Downs syndrome is not one of those conditions that inevitably causes terrible suffering and death at a very young age. Mental capacity is diminished but Downs syndrome babies usually grow up to have meaningful and productive lives and are well-loved. They have some health problems but tend to live to be about 60 these days, with the right medical intervention.

This sort of intervention is also likely to be a slippery slope:

When Thordis Ingadottir was pregnant with her third child at the age of 40, she took the screening test. The results showed her chances of having a child with Down syndrome were very slim, odds of 1 in 1,600. However, the screening test is only 85 percent accurate. That year, 2009, three babies were born with Down syndrome in Iceland, including Ingadottir’s daughter Agusta, who is now 7…

As Agusta grows up, “I will hope that she will be fully integrated on her own terms in this society. That’s my dream,” Ingadottir said. “Isn’t that the basic needs of life? What kind of society do you want to live in?”

Geneticist Kari Stefansson is the founder of deCODE Genetics, a company that has studied nearly the entire Icelandic population’s genomes. He has a unique perspective on the advancement of medical technology. “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.”

You said it.

[NOTE: I am extremely grateful that I never had to make this decision. When I was pregnant, amniocentesis was far from standard.]

18 Responses to “Iceland says down with Downs”

  1. Lizzy Says:

    The tests not being accurate also means that women will abort healthy babies incorrectly identified as Downs.

    I find the term “eradicate” unsettling, particularly since this is not some communicable or inherited disease; they’re not stopping Downs, just stopping those kids from being born. The Downs babies will continue to be conceived in Iceland, which not the same thing as, say, the eradication of yellow fever or polio from a society/community.

  2. Matthew Says:

    The Spartans would abandon children they believe not fit to the elements. We do the same. So much for human progress.

  3. DNW Says:

  4. F Says:

    I have heard — although never with great authority — that doctors and midwives delivering obviously “defective” infants as recently as the last century would allow the infant to die before taking its first breath. When I first heard this I understood defective to mean, for example, a physical deformity. Does this apply to Down Syndrome? Hard to say, as it might not be recognizable at delivery. And maybe the story is completely untrue.

    Given our ability to deliver and incubate significantly premature infants, I think there has been an evolution in medical ethics, saving the lives of infants and adults where the quality of life will be in question.

    I don’t see this discussed a lot, and perhaps the situation with Down Syndrome is instructive: as medical capabilities improve, who can say whether poor quality of life will be a problem in a wide range of conditions?

  5. Don S Says:

    F- True. I heard this from a university prof- a former MD turned teacher-in the mid 70’s. He called it “pillowing”. The newborn was placed face down on the receiving blanket and suffocated. Given the profs age and the time at which he was a working MD, this dated back to at least as long ago as the mid 1900’s.
    And,BTW, I worked for quite a time at a residential center for developmentally disabled people. Downs manifests as a spectrum. Impairment can be fairly mild or devastatingly profound. The former get TV programs about them -we took care of the latter.

  6. Bill Says:

    This is awful. Unsurprising but awful. The people w DS I’ve known lead full lives and are often some of the most delightful souls you’ll ever meet.

  7. vanderleun Says:

    Origins of the Faith

    They expose the unwanted infant
    On a hot, flat stone or throw it,
    Whirling, by the feet into the ravine
    For the raven’s obscene brunch,
    And walk back down
    The barren brindle hill
    To the village of rocks,
    Hearing the mother moan,
    Noting the father’s stern smile.
    All male, the state demands,
    And sound.

  8. Jamie Says:

    When I was pregnant with our second, I was 35 and amnio was offered. I would have done the test for information but only have used that information to prepare for any difficulty the test might indicate was coming our way. However, I wasn’t sure how my husband felt about it (the test, the results, our response) until he gave his answer: he looked at me, said, “Would it change anything we’d do?” I shook my head (I admit, a little tentatively, since as I said I wasn’t sure of his feelings and knew that if we disagreed we would need to find a compromise – we should not go into something like having a disabled child without being on the same page, if at all possible). And he shrugged and said, “Then I guess it’s not worth the risks. No thanks.”

    I was (not to my credit) kind of surprised. But I should have realized that the kind of father he had already been to our first was going to be the kind of father who would accept and love our second and third however they came on the scene. Apparently, on the principle that God shapes the back to fit the burden, we were shaped to be the parents of three kids who are physically healthy and cognitively “normal,” whatever that means.

  9. Ymar Sakar Says:

    The Left will determine if you are born, when you are born, and how much you get to pay them for the privilege of living.

    Downs Syndrome is a result of an incomplete or over complete synchronization between the spirit that controls matter, and the mortar avatar the spirit logs into in order to control the avatar on the material dimension.

  10. Ymar Sakar Says:

    The spirit that controls flesh is independently intelligent of the dna and the brain size/complexity.

    Which is why crows and certain birds are self taught to use tools, whereas apes and monkeys are way more dumb in comparison.

    Such birds do not have the brain capacity to do so, if we are genetically closer to apes, then apes should be second only to us in intelligence. Yet it is the spirit that controls matter, and it is the quantum state of the spirit that contains the information, not the brain. The brain is merely like a radio, it only filters and transmutes data, it does not store it nor does it manage it.

    Killing off the mortal avatar form of a super intelligent spirit, is about as useless as nuking yourself because you hate breakfast.

    Continue your voyage in life believing that the State has the power, because you gave them all that power. In the end, your spirit will still be around in eternal damnation and agony, irregardless of what happens to the temporary flesh. Who cares about what happens to your virtual accounts and avatars? You can just make a new one from scratch later on with enough investment. But those who labored and harbored the intent of supporting evil, will still be penalized at their spirit, the real source of their pain and joy.

  11. ConceptJunkie Says:

    I think eugenics is going to come roaring back in the next couple decades, except that we will have the technology to be much more effective, and much more ruthless about it. Single-payer health care is going to accelerate the problem because governments can save money by aborting or euthanizing people who will be a drain on the system. Death panels are real and inevitable.

    Scandinavia and Iceland are at the forefront of this kind of ruthless calculus of the value of human life, and it’s going to get worse before it gets better. As many people have said, the right to die will eventually become the duty to die.

  12. Lizzy Says:

    “Given our ability to deliver and incubate significantly premature infants, I think there has been an evolution in medical ethics, saving the lives of infants and adults where the quality of life will be in question.”

    Sure, we can detect more birth defects/issues early, and better save premature babies — and we also have more treatments available to help a lot of them long term. For example, a variety of heart defects can be treated today that 30+ years ago were a death sentence. Are we going to judge the quality of life of someone who’s only operating at 93% blood oxygenation as less worthy and not a valid expense (surgeries) next?

    Downs is not a terminal disease, not a futile waste of precious healthcare resources (i.e., not an ailment that will surely kill the baby within hours/days/weeks). I am not comfortable with a society that wants to judge the quality of a non-terminal child’s life. This is the path to Hitler’s Aktion T4 program (yeah, some topics do require one to ‘go Godwin’).

  13. Molly Brown Says:

    When I was pregnant with my first child I had the test for Downs and my husband and I were in agreement that we would terminate if the result was positive. We were told that would be best for everyone.
    Fast forward two and a half years later and we are on the way to the hospital for the next baby’s test. I had already decided that if the result was positive and my husband couldn’t accept it that I would chose a Down’s baby over my marriage.
    As he pulled into a parking place my husband turned to me and said; ‘Why are we even doing this? We’re not getting rid of this baby no matter what’s wrong with it.’ We have been together for 38 years – and hope for many more – but I don’t think I could ever love him more than I did in that moment.
    FWIW, that was also the beginning of my change.

  14. J.J. Says:

    Jamie and Molly Brown, thanks for sharing.

    I worked out at a gym for five years where one of their employees was a Down Syndrome boy who kept the men’s locker area clean. He was a delightful young man to be around. I know he was one of those who is high functioning, but he certainly changed my image of DS children. When Sara Palin decided to keep her DS boy, Trig, it made me like her even more.

    As I’ve mentioned before, travel opens one’s eyes. So many cultures that do not share the values we do. Just thankful to live in the good old USA. Not perfect, but a darn sight better than most places and a place where we can try to improve.

  15. Roy Says:

    I know and have known several people who are Downs syndrome. They range from toddlers to adults. *ALL* of them are delights to be around. (I know, there might be other issues or problems with raising a Downs syndrome child that I am unaware of. Still…)

    You want to know what is happening to our country? …to western society? It’s this:

    Ever since the advent of “abortion for convenience”, our society has turned its back on God. The results are not unexpected.

  16. n.n Says:

    Lives deemed unworthy.

    The Pro-Choice (i.e. selective, opportunistic, and unprincipled) quasi-religious/moral, legal, scientific, and social philosophy is a short-term response with long-term consequences.

    There is no easy answer, but we should strive toward reconciliation of moral (i.e. individual dignity, intrinsic value), natural, and personal imperatives.

  17. n.n Says:

    reconciliation of moral (i.e. individual dignity, intrinsic value), natural, and personal imperatives

    Internally, externally, and mutually consistent principles.

  18. Ymar Sakar Says:

    Roy Says:
    August 17th, 2017 at 9:46 am

    Most likely correct. One reason I wasn’t all that optimistic about Trum being our Hussein type messiah that is going to “save the Republic” is because usually when a nation violates divine commands, like Israel did, the punishments would begin. And it will start small and end up larger and larger as time goes on, giving people plenty of time to repent.

    When they don’t, the Flood comes or the cities are destroyed by orbital meta weapons like Soddom and Gomorrah.

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Previously a lifelong Democrat, born in New York and living in New England, surrounded by liberals on all sides, I've found myself slowly but surely leaving the fold and becoming that dread thing: a neocon.

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