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

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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