Backlash has begun over a recent CBS News story, the headline for which reads: 'Inside the country where Down syndrome is disappearing'.
From first impression, this may seem as though the condition is becoming less common by its own volition, or there had been some kind of scientific breakthrough. However, a more accurate explanation, explored within the story, is that the overwhelming majority of expecting parents are choosing to terminate their pregnancies if the foetus shows signs of having Down Syndrome.
The story delves into Iceland's practice for prenatal screening tests, and the fact that the vast majority of Icelandic women - very close to 100 per cent - choose to terminate their pregnancy if their unborn child tests positive for the condition.
How far along a pregnancy is does not matter, in this instance. Icelandic law permits abortions after the 16-week mark, if the tests show signs that the foetus has "a deformity" - Down Syndrome is included in this categorisation.
As a result of these practices, Iceland has an average of only one or two babies born with Down Syndrome per year.
Some are horrified, saying that the condition itself isn't being eradicated - people who have Down Syndrome are.
Iceland introduced prenatal screening tests in the early 2000s. The tests are optional, but government orders state that all expecting women must be thoroughly informed about the tests. According to the Landspitali University Hospital in Reykjavik, between 80 to 85 per cent of women choose to undergo the testing.
One woman chose to have the test after being told that majority of women had done it. "They told me that most women did it," she said. "It did affect me maybe a little bit."
CBS also spoke to a mother of a 7-year-old girl, Agusta, who has Down Syndrome - Thordis Ingadottir took the prenatal testing, which said her baby had only 1 in 1600 chance of having the condition, and she went ahead with the pregnancy. Ingadottir has since become an activist for the rights of people with the condition in Iceland.
"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 Stafansson, the founder of deCODE Genetics, told CBS that the near 100 per cent termination rate of foetuses likely to have Down Syndrome "reflects a relatively heavy-handed genetic counselling".
"I don't think that heavy-handed genetic counselling is desirable," he said. "You're having impact on decisions that are not medical, in a way."
In response to the report, people began sharing their thoughts about Iceland's prenatal screening practices, and parents began sharing adoring photos of their own children who have Down Syndrome:
Some anti-abortion activists, including conservative US politician Sarah Palin, used the story as an example of abortion being "evil". Others from the pro-choice camp spoke out about this being an issue far removed from the pro-choice vs. anti-abortion debate, and that while they did not disagree that women should be allowed the choice of termination and autonomy over their own bodies, Iceland's practice shows ingrained discrimination against people with Down Syndrome.
SBS reached out to the CEO of Down Syndrome Australia, Dr Ellen Skladzien, who told us that the report on prenatal screening and consequential abortions of children with Down Syndrome in Iceland had brought up "a number" of concerns.
"The headline used in the story was inappropriate as it does not accurately reflect the issues around prenatal screening and suggests that Down syndrome can be “eradicated”.
"We are unable to comment directly about the counseling or information that is provided to families in Iceland, but Down Syndrome Australia believes that women should be able to make an informed choice about prenatal screening and continuation of pregnancy. It is essential that good information is available both before deciding to have screening and after results are provided.
"Unfortunately in Australia, many people are given outdated and inaccurate information and are therefore unable to make an informed choice. It is simply unethical to provide a screening test for any condition without adequate information and consent. People should also have an opportunity to meet with other families and get up-to-date information about Down syndrome before making any decisions.
"Down Syndrome Australia will continue to advocate for better information and support for families who are undergoing prenatal screening."
