Iceland made international headlines years ago, when it was discovered that there is a nearly 100% abortion rate for babies diagnosed prenatally with Down syndrome. And as nearly all pregnant women in Iceland undergo prenatal testing, that means Down syndrome is disappearing.
Fast-forward to the present day, and not much has changed — and Icelandic bioethics experts are beginning to get concerned.
The Australian Broadcasting Corporation recently published an article investigating why Iceland has such a sky-high abortion rate; there, just two or three babies with Down syndrome are born each year. This is because approximately 85% of pregnant Icelandic women opt for prenatal testing, and when there is a positive result for Down syndrome, abortion is virtually always chosen.
Ástríður Stefánsdóttir, a medical doctor and a professor in applied ethics at the University of Iceland, implied that having an abortion due to Down syndrome is practically a foregone conclusion.
“I’m not sure that our attitude is so different from other countries. It might just be that the decision is taken at another place in the process,” she said. “Those who take the tests have already made up their mind that they are not going to have a baby with Trisomy 21. So if there is a [high] abortion rate, that’s not strange.”
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She added, “Everyone goes into the system. We don’t have many pregnancies where women never have any touch with the medical system — I think I can say the number is zero.”
Also chiming in was Dominic Wilkinson, a consultant in newborn intensive care and a professor of medical ethics at the University of Oxford, who claimed that parents who choose to undergo eugenic abortions don’t make that decision “lightly,” saying, “Parents find these types of decisions incredibly difficult. [Decisions before birth] are about the family that they want to have, the child that they feel in a position to support and the life that they would wish for their future child.”
This is part of the inherent problem, however. A child should never be a product to be purchased and created according to the buyer’s specifications. Choosing to become a parent should never mean that one can choose what kind of child they receive, and then discard the defective ones. There is never a guarantee of perfection — let alone health — whether a diagnosis happens prenatally, at birth, or 10 years down the line. Whether a person has a disability or not, he or she has an inherent right to life, and that life is still valuable and worth living.
Stefánsdóttir admitted that Iceland does not offer many positive representations of life with Down syndrome, allowing people to remain fixed on negative, outdated stereotypes of what raising a child with a disability is like.
“I know [medical professionals] try to do their absolute best in informing people, but we can always do better,” she said. “And of course, it’s best if people know this before they get pregnant and they don’t have to face all of this at the time of pregnancy, because it is limited how much you can discuss this in 20 minutes of meeting time with the midwife or doctor. Personally, I think the best thing we can do is to have people with intellectual disability and people with Down syndrome … publicly visible. This changes the way people think [through] personal histories, personal encounters.”
Yet it will be impossible for people with Down syndrome to be publicly visible and share their personal histories if they never get the chance to be born.
And Stefánsdóttir also admitted that the Down syndrome community is bothered by this discriminatory culture. “When we start listening to what people with Down syndrome themselves have to say about this … they find it disturbing … and we hear the same stories from their families,” she said. “My view is that it has influence. And the simple fact that the tests exist devalues their life.”
As the Australian Broadcasting Corporation pointed out, many people choose abortion after a prenatal diagnosis because they are led to do so by their doctors.
“Our concern is that the information being presented to prospective parents is sometimes inaccurate, biased, not delivered in the best way,” Darryl Steff, CEO of Down Syndrome Australia, said. “Prospective parents have the right to make the decision that’s appropriate for them, and everyone’s circumstances are different … so it’s not about a pro-life position, it’s about an informed choice.”
Even a pro-abortion advocate who works for an abortion organization finds the pressure troubling.
Bonney Corbin is the director of advocacy at MSI Asia Pacific, and was also born with several genetic mutations. Though she still argued that women should be able to have abortions for any reason, she also admitted that the current eugenic mentality is problematic. “So much of the rhetoric around prenatal testing, foetal anomaly identification and coercion towards abortion is laced with some sort of value-based judgment that we need to eliminate disability,” she said. “It can be done in so many different ways, [like] ‘I’m sorry to say that …’ or ‘I have bad news.’ [If] it’s said with a frown or a smile, that can really influence the whole context of that pregnancy scan and the decisions that result from it.”
