The Jury Talks Back

8/14/2017

Iceland’s Darkness: Eradicating Down Syndrome From Their Society

Filed under: Uncategorized — Dana @ 7:38 pm

[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.

–Dana

1 Comment »

  1. “This is your life — you have the right to choose how your life will look like.”

    Pro-choice is substituting human judgment for God’s.

    Comment by DRJ — 8/15/2017 @ 6:35 am

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