CBS News ran a story in August 2017 about Iceland’s method of making Down syndrome “disappear”. MSN picked it up. How abominably abhorrent is this discussion of Iceland killing almost all its babies with certain genetic disorders? Let us count the ways.
1. The title: The Country Where Down Syndrome is Disappearing. Really? People with Down syndrome being killed is not the same thing as the condition disappearing. I mean, if someone wanted Jews or girls or poor people to disappear, killing them would do the trick, too, but we’d rightly be horrified by it.
2. “The number of babies born with Down syndrome has significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland.” Or, eradicating Down syndrome people, perhaps? We identify more and more people with the possibility of having genetic disorders that we don’t want our society to be plagued with, and kill them to preserve our purity?
3. “Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.” What if they didn’t? Would they be any less valuable as humans? Who’s to say which life is “full” and which isn’t? What’s the implication here? That there’s some threshold of health and longevity expectations below which people might as well be killed? Is living with Down syndrome in a Western European country with modern nutrition and sanitation any less “healthy” than living without a “genetic disorder” amidst disease and food scarcity and without even clean water in Africa or Southeast Asia?
4. “Other countries aren’t lagging too far behind in Down syndrome termination rates.” Stated another way, could we say “in the race to kill people with undesirable genetic traits, the rest of the world has some catching up to do”? Down syndrome isn’t being terminated – people are being terminated. Does killing people with Down syndrome terminate Down syndrome any more than killing blind people terminate blindness?
5. “Babies with Down syndrome are still being born in Iceland… we didn’t find them in our screening.” So, what, too bad you didn’t get every last one of them?
6. “The screening test is only 85 percent accurate.” Iceland has a very low birth rate because it has a very small population, but what happens if a larger country like the United States applies their practices? According to the National Down Syndrome Society, 6000 or so (1 in 700) babies are born with Down syndrome each year in the United States. If almost all babies whose tests were positive with an accuracy rate of 85% were killed, 15% of them would be killed “by mistake”, who didn’t have Down syndrome at all. Is 900 “normal” babies per year an acceptable enough margin of error to make Down syndrome “disappear” in the US?
7. “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.” My understanding is that there are many children with Down syndrome in Iceland – it’s just that there is hardly ever a case where such a child is allowed to be born and live out his life.
8. “Some people would say that just offering the test is pointing you towards a certain direction.” Ya think? By default, the baby lives; only by running a test that approximates the likelihood of undesirable traits are you are introducing data to steer you away from that default.
9. “Olafsdottir counsels 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.'” Oh? The baby’s girl’s life isn’t “your” life – it’s “her” life (unless you bring a particular religious tradition into it, then it’s neither yours nor hers). Your “right to choose how your life will look” extends to eliminating other lives that intrude on your choices? If that’s counseling, why bother?
10. “We don’t look at abortion as a murder. We look at it as a thing that we ended.” Considering a person a “thing” is half the problem. The other half of the problem is recognizing her as a person but deciding to kill her anyway.
11. “We ended a possible life that may have had a huge complication…” No – you ended a life, not a “possible” life. So, the mere possibility of an arbitrarily “huge” “complication” is the determining factor in whether someone should live or die? If we were to apply this principle to born people, how might that play out? Imagine if we started advocating for terminating the lives of other kinds of people who we don’t think have a good enough chance of leading lives free of “huge complications”.
12. “…preventing suffering for the child and for the family.” Agusta Ingadottir, pictured in the article, is suffering exactly how? Even in severe cases, is the person with Down syndrome suffering more than the rest of us, or just living life in a way that’s normal to them considering their abilities? The article even links to the National Down Syndrome Society website, which describes all facets of Down syndrome with nary a mention of “suffering”. Could it be that an appeal to “preventing suffering for the child” is just a smokescreen for “preventing suffering for the family”? In stark contrast to this specious statement, the NDSS website advocates books in which “a message from families that is echoed again and again is that the positive impacts of having a member with Down syndrome far outweigh any difficulties or challenges that may come up.” Besides, what does that matter? There are plenty of people who endure suffering of all kinds, but we don’t kill them.
I wonder how long it will be before a politician points to Iceland as a model for controlling the burden of undesirable people from its population? And says that we have “advances” in and availability of “medical care” to thank for it? And that party loyalists will eat it up? And how long before other undesirable genetic traits will be detected and marked for eradication as well?
I hate to present all negativity, so I’d like to offer a glimmer or two of hope in all of this. To CBS’s credit, they don’t outright commend Iceland for what they’re doing, although some of the earlier statements are quite favorable. They do give voice to those who are raising objections — not stamping out this side of the debate at least gives the appearance of objectivity. The Federalist, National Review, The Daily Signal, and even, refreshingly, at least one celebrity, have taken the lead in rightly condemning the practice and the casual headlines. Thordis Ingadottir, Agusta’s mother, “has become an activist for the rights of people with Down syndrome.” Hopefully the rights will extend to the right to life itself instead of the almost automatic termination of anyone with a high enough probability of having Down syndrome. And Geneticist Kari Stefansson seems to have something resembling a conscience when he says that the near 100% termination rate “reflects a relatively heavy-handed genetic counseling… 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.” In a way? In every way. Maybe these two will have some measurable impact on the morals of their little country. And maybe big countries will recoil in horror from the awful eugenics experiment that’s going on in Iceland, refuse to participate, and call them out on it.
In the words of the counselor Helga Sol Olafsdottir, “Life isn’t black and white. Life is grey.” Life, you say?