Analysis

Iceland isn’t ‘eradicating’ Down syndrome — it is killing every person who has it

A recent CBS News episode of “CBSN: On Assignment” has garnered some disturbing headlines this week with an episode entitled “The country where Down syndrome is disappearing.” The story reports on the nation of Iceland and the almost 100 percent abortion rate for preborn babies diagnosed with Down syndrome. The CBS story took on a tragically ironic tone:

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… 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.

Iceland, with a population of 330,000, sees only about two children a year born with Down syndrome, CBS reports, noting that in the United States, about 6,000 babies are born annually with Down syndrome. While some women choose not to receive genetic testing, since an Icelandic law requires women be informed of the availability of the testing (and a majority of women do test), it’s a widespread practice. So is aborting the child diagnosed with Down syndrome. In fact, one mother even admits to CBS News that she, indeed, aborted partly from the pressure she felt, because it seemed so many mothers were doing it.

CBS reports that four out of five mothers who receive a prenatal diagnosis of Down syndrome chose to abort their baby:

For expectant mother Bergthori Einarsdottir, who chose to have the test, knowing that most women did so helped steer her decision. “It was not pressure, but they told me that most women did it,” she said. “It did affect me maybe a little bit.”

The story explains that sometimes the reason two children per year with Down syndrome are born is because “sometimes after their parents received inaccurate test results.” And one hospital official who works in prenatal testing at the facility where approximately 70 percent of Icelandic babies are born adds: “Babies with Down syndrome are still being born in Iceland. Some of them were low risk in our screening test, so we didn’t find them in our screening.”

Making the birth of a baby with Down syndrome sound like a mistake due to bad testing is only one of many disturbing attitudes in the nation. The story reports how one mother who received incorrect test results launched herself into advocating for individuals with Down syndrome:

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…. Since the birth of her daughter, Ingadottir has become an activist for the rights of people with Down syndrome.

Another consideration of Iceland’s genetic testing is that if it’s only 85 percent accurate, how many children with Down syndrome diagnoses don’t actually have developmental issues? Iceland is certainly aborting some children it would deem “worthy” of living. But of course, every child should have a right to live, no matter what issues might exist. In a society that values life, this is not a difficult concept, but in Iceland the right to life is only a reality for some. And that’s why the backlash against the nation has been so vitriolic. When CBS News posted its initial tweet about the story, the replies were fast and furious:

Everybody Loves Raymond star and outspoken pro-lifer Patricia Heaton agrees with many of these tweets and blasted the nation’s practice on her Twitter account:

Heaton’s Twitter feed is now filled with replies sent to her by parents and loved ones of those who have Down syndrome. Many are thanking her for speaking out. Most of the tweets sent to her by others are pictures of obviously happy and thriving people with Down syndrome, something that no doubt has become a rare sight in Iceland.

The CBS story quotes geneticist Kari Stefansson, who founded a genetics company that studies almost all of Iceland’s genomes. Stefansson says:

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.

But he also admits, “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.”

However, at the hospital where most Icelandic babies are born, one of the people counseling women about their prenatal diagnoses says she tells women who are wrestling with feeling guilty about their abortion decision: “This is your life — you have the right to choose how your life will look like.” She adds:

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.

This attitude is the most disturbing of all. If a human being’s heart stops, that person is considered dead. There is nothing grey about that. Life is life and death is death. Parents of children with Down syndrome often comment about the joy their children have brought them and many they meet. Despite what Iceland’s leaders may believe, there are many who are happy to adopt children with Down syndrome and special needs. So if a woman doesn’t’t feel she can raise her child, she should be offered adoption as an option.

Icleandic officials may not “look at abortion as murder,” but that doesn’t make it any less so. Abortion takes a human life. Iceland most certainly has not eradicated Down syndrome; it is simply killing every person who has it.

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