Why hardly any babies with Down syndrome are born in Iceland.

Video via ABC

Each year in Australia, roughly 272 babies are born with Down syndrome. In Iceland, the figures don’t nearly compare, with only one to two children born with Down syndrome each year. These rates mean the Nordic country may soon become the first to completely eradicate the genetic condition.

Down syndrome is a congenital disorder that arises from a chromosome defect – specifically, people with Down syndrome have 47 chromosomes in their cells instead of 46, which results in physical, developmental, and intellectual abnormalities.

So, why exactly are Iceland’s figures so low? Quite controversially, their near-eradication of the condition is pinned down to the fact that almost 100% of expectant mothers to children with Down syndrome choose to terminate their pregnancies. In Australia, this figure is closer to 80-90%, according to ABC‘s Lateline program.

In the early 2000s, Iceland introduced prenatal tests, allowing women to screen for the genetic condition in early pregnancy. Now, about 85 per cent of women in Iceland choose to do this testing. While these tests are available all over the world, it’s the likelihood of a woman in Iceland terminating the pregnancy that sets them apart.

Helga Sol Olafsdottir, a pregnancy counsellor in Iceland, spoke to CBS News about why Icelandic women overwhelmingly choose to terminate Down syndrome pregnancies. “We don’t look at abortion as a murder,” she said. “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 gray.”

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Speaking to The New Daily in August last year, Western Australian mum Emily McCain expressed her concern that misinformation was affecting women’s decisions to terminate Down syndrome pregnancies.

Thirteen weeks into her pregnancy with her daughter, McCain was told it was likely her baby would have the genetic condition. Another test ultimately confirmed her unborn child had Down syndrome.

“At that stage, I was halfway through my pregnancy, and my doctor was advising me to terminate the baby,” she said.

“Being told to terminate your baby by a doctor makes you doubt whether you’re making the right decision.”

McCain told The New Daily that when she first saw her daughter, who was eight at the time of publication, she saw “this perfect little baby”.

“I didn’t feel any regret. I knew I’d made the right decision.”

For University of Sydney bioethicist Dr Tereza Hendl, these high rates of termination beg questions about the stigma of intellectual impairments.

“There are serious ethical concerns,” she said. “A woman who decides to have a child with Down syndrome can be stigmatised and labeled as a ‘burden on society’. In the future, families with children with Down syndrome could find it hard to find social support.”

A majority of Australian women who received a diagnosis of Down syndrome during their pregnancy said the prenatal care they received after that diagnosis was ‘poor’ or ‘very poor’. Many felt pressured to terminate, and were given only worst case scenarios for their child’s future.

When asked about Iceland’s rates of Down syndrome, geneticist Kari Stefansson told CBS News, “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.”

 

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