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.”
Top Comments
I am a person whose unborn child received a diagnosis of Down syndrome - picked up in early blood testing and confirmed by CVS.
I wish to just put it out there that those of us put in that position do not want to abandon our children but we are put into a position where we need to evaluate the value of our little ones life based on statistics and research around their health and level of disability.
When you receive a diagnosis of Down syndrome, no-one can tell you how severely your little one will be affected. We sought support from
A genetic counsellor, the DS Association in our state, talked to numerous family and sought support from a specialist psychologist. We took about a month to come to our decision.
Ultimately, we came to the decision to induce our baby girl at 16 weeks knowing that she would not survive - in other words, to terminate. We did not do this because we do not think we were up to the challenge, or because we wanted a “perfect”
Child - both of us were comfortable with the prospect of raising a child with intellectual disability. But where we faltered was with the prospect of would happen to our girl if she survived and lived to 30 or 40 or 50 or more and my husband and I would became to old to care for her
- especially as neither of us have any other family or children who would be able to take over care. I do not have faith in the government support systems that would take over her care when we die. We could
Pour our heart and souls into interventions and hope that we could set our girl up to be relatively independent, but when you have a prenatal diagnosis you have to look
At the worst case scenario. Every person with Down syndrome is different and so for us, that scenario is what if my girl is on the poorer functioning end of the spectrum? Other people in those chat have spoken about the co-morbidities which we researched in great detail and I won’t repeat, but from our talking to families the abilities of every person with DS varied hugely.
I am not saying my decision was the right one, nor that it is the right one for everyone. I also do not believe that all those with disabilities should be terminated. I actually have done a lot of work in disability and don’t believe it is necessarily a limitation.
But these decisions don’t get made in a vacuum. Every family faced with this decision looks at the support which they will be able to access amongst their family and from the government to see if they can do this. I do get upset when people blame the parents terminating their pregnancies after a prenatal diagnosis because I look at the current royal commission into abuse in disability services, or the managing of the NDIS and I think get angry at THAT! Guilting parents who terminate is does not change the support systems which often our decisions are based on.
"..the first to completely eradicate the genetic condition" is misleading. Down Syndrome isn't hereditable. There will always be a few cases, even if they never make it out of the abortion clinic.
Perhaps not; we aren't yet sure what causes trisomy 21, but we do know that apparently almost any trait or tendency can eventually be bred into or out of a species given enough time and selective pressure.
Like empathy?
Empathy? You mean like deciding not to let a embryo with a high potential for multiple problems be born and therefore allowed to suffer without need?
Down syndrome is not fatal or painful. I don’t think there’s much suffering involved. In fact, of the half dozen people I know with Down syndrome none of them would consider their life not worth living. It is a disability, not a disaster.
Ignorance and outdated opinions breed fear and further ignorance.