In Iceland, almost all diagnosed Down syndrome pregnancies are aborted after prenatal testing. Some bioethics experts are concerned

In Iceland, almost all diagnosed Down syndrome pregnancies are aborted after prenatal testing. Some bioethics experts are concerned
  • PublishedMay 1, 2024

Iceland is known for its rugged landscape, rich Viking history, and progressive social politics.

But the Nordic island nation has another lesser-known distinction: There is next to no-one in its population with Down syndrome.

According to the Icelandic government, two or three children with Down syndrome are born on average each year.

That’s a rate 2.5 times less than in Australia and almost four times less than in the USA.

The explanation has been well documented. In Iceland, upwards of 85 per cent of women elect to have prenatal testing, and close to 100 per cent of pregnancies where Down syndrome is diagnosed are terminated.

Denmark isn’t far behind, with a termination rate of 98 per cent.

These are deeply personal and often painful decisions made by prospective parents. But experts and disability advocates say this statistic also raises complex and confronting questions.

Questions like, what could this mean for the diversity of our future societies? And what does it say about how we value those living with disabilities?

A difficult choice

Down syndrome, also known as Trisomy 21, is a genetic condition that occurs at conception. Where most people have 46 chromosomes, those with Down syndrome have 47.

The condition usually confers some level of intellectual disability, increased risk of certain health conditions like heart defects, vision and hearing loss, developmental delays and characteristic physical features.

During the early stages of pregnancy, ultrasounds and a non-invasive blood test are commonly used to screen for Down syndrome and other chromosomal irregularities. Diagnostic tests can then be done to provide more definitive results.

Data shows that in the case of a positive result for Down syndrome, women around the world mostly choose to terminate their pregnancy.

In Australia and the UK, the termination rate is estimated to be around 90 per cent. In the USA, researchers put it between 67 and 85 per cent.

Dominic Wilkinson, a consultant in newborn intensive care and a professor of medical ethics at the University of Oxford, says he’s “never met a parent who’s made such a decision lightly”.

“Parents find these types of decisions incredibly difficult,” he says.

“[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.”

An illustration of a pregnancy test with two red lines indicating a positive.
Professor Wilkinson says women’s choices before birth are “shaped by their expectations” and “informed by what they see around them”.(ABC RN: Anna Levy)

Professor Wilkinson says there are a range of factors that affect that choice, including the individual values of the family and the cultural values of their community.

“Sometimes those decisions are shaped in positive ways, by hearing the support and the openness of society to support women’s choices either to continue or to discontinue a pregnancy,” he says.

“Other times, those choices are certainly shaped in more negative ways by prejudice or bias or fears about the ability of a society or family to access the care that they would need.”

Julia Hales, an actor and artist with Down syndrome, has seen those choices first-hand.

In an ABC documentary she presented, she examined the impact of prenatal testing for Down syndrome on families and communities — including her own.

She says while it was a confronting process to witness, she felt empathy for those who decided to terminate their pregnancy.

“Inside me, it’s quite sad. It is sad not to have babies with Down syndrome,” she says.

“But I completely understand what [pregnant women] are going through … They don’t see the other side but that’s OK. If they feel like they want to terminate, then it’s completely up to them.”

The case of Iceland

The story behind Iceland’s high termination rate is debated.

As with other Nordic states, it has a progressive healthcare system, especially when it comes to abortion.

Universal health care is enshrined in Icelandic law and almost entirely publicly funded. Abortion was first legalised for certain cases in 1935, and Iceland’s current termination policy is considered highly progressive.

Iceland was also an early adopter of first-trimester combined screening — which can detect Down syndrome and other genomic conditions — and began offering it to all pregnant women in 2003, although access can be geographically challenging for some. Studies report that in Icelandic culture, prenatal testing is widely accepted.

But Ástríður Stefánsdóttir, a medical doctor and a professor in applied ethics at the University of Iceland, doubts cultural factors are all that significant.

“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 says.

“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.”

She says it’s more relevant that “it’s impossible to get lost” in the Icelandic healthcare system.

“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.”

An illustration of a silhouetted woman in profile, her hands on her pregnant belly.
Icelandic law allows for abortion on request until the end of the 22nd week of pregnancy.(ABC RN: Anna Levy)

However, Professor Stefánsdóttir says Iceland, like most countries, could do more to inform the public about what life with a child with Down syndrome could look like.

“I know [medical professionals] try to do their absolute best in informing people, but we can always do better,” she says.

“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.”

She believes increased connections to those living with Down syndrome would help.

“Personally, I think the best thing we can do is to have people with intellectual disability and people with Down syndrome … publicly visible,” she says.

“This changes the way people think [through] personal histories, personal encounters.”

Nonetheless, she says the high rates of termination have real consequences for those with Down syndrome and their communities.

“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 says.

“My view is that it has influence. And the simple fact that the tests exist devalues their life.”

Concerns over misinformation

In Australia, negative experiences of prenatal testing have been highlighted lately, by a recent submission to the NSW Birth Trauma Inquiry by Down Syndrome NSW.

The peak body, which represents more than 5,000 people, told the inquiry that 49 per cent of families surveyed felt pressured by medical professionals to terminate their pregnancies.

Women have also reported feeling alienated, neglected and discriminated against during and after prenatal testing, and being given biased information about their child’s future.

Darryl Steff, the CEO of Down Syndrome Australia, says these are worrying accounts.

“Our concern is that the information being presented to prospective parents is sometimes inaccurate, biased, not delivered in the best way,” he says.

“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.”

Bonney Corbin is the director of advocacy at MSI Asia Pacific, an “unapologetically pro-choice” non-profit organisation that works to provide women with reproductive health care, including contraception and abortions.

She was also born with several genetic mutations, which she says “would warrant a clinical recommendation to consider having an abortion”.

As an advocate in both disability and pro-choice communities, Ms Corbin believes non-judgemental care and informed consent are key.

“For a person who’s pregnant, it’s their decision and theirs alone how they proceed with a pregnancy,” she says.

“It needs to not be about decreasing the rate of disability, it needs to be about increasing the choices that people have in pregnancy.”

An illustration of a doctor, dressed in scrubs with a stethoscope, holding the hands of a seated woman of colour.
“We need to be compassionate and develop a sense of humanity around talking about pregnancy scans,” Ms Corbin says.(ABC RN: Anna Levy)

In her work with MSI and as chair of the Australian Women’s Health Alliance, Ms Corbin says she’s seen ableism permeate almost every aspect of preconception and prenatal care.

“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 says.

That can come down to the language medical professionals use when they explain a prenatal diagnosis.

“It can be done in so many different ways, [like] ‘I’m sorry to say that …’ or ‘I have bad news’,” Ms Corbin says.

“[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.”

Is this eugenics?

Bioethicists have long debated whether eradicating Down syndrome through abortion amounts to eugenics.

Rosemarie Garland-Thomson, a bioethicist and a professor emeritus in English literature at Emory University, believes it is “definitely a eugenic initiative”.

She explains that eugenics began as the “progressive” idea that humans have “a moral, political and social obligation to improve human communities” through medical science.

However, history shows how that logic played out through the horrors of the Holocaust and other mass violence in the 20th century.

In the aftermath of World War II, eugenics was roundly denounced and the field of bioethics rose in prominence.

“Yet, many have argued that this fundamental premise of eugenics, that the best people ought to be encouraged and the least fit or the least desirable people should be discouraged from existence, has carried forward in ways that are ethically distressing,” Professor Garland-Thomson says.

“And genetic conditions, especially Down syndrome, represent the most important cases here.”

In a society that “values consciousness and cognitive capability”, people with intellectual disabilities are particularly devalued, she says.

“Because the human characteristics that we think of as [related to] Down syndrome are largely identified as undesirable characteristics … it becomes logical to eliminate the so-called disease that is Down syndrome, and with it, the persons get eliminated.

“This is what makes, in my view and in many people’s views, the health initiative of eliminating Down syndrome … unethical and eugenic.”

But Professor Wilkinson from the University of Oxford thinks very differently about the issue.

“I think it’s very important to distinguish between what is clearly ethically deeply problematic and wrongful, which is state-enforced decision-making in order to ‘improve’ the quality of the genes of the population … That’s what was attempted in the middle of the 20th century in a very crude way,” he says.

“That’s not what’s contemplated or referred to in relation to offering the option, non-compulsorily and non-coercively, to women and families of finding important and relevant information about conditions that might seriously affect their future child’s life and then supporting them to make informed choices.”

No matter how medical technology may progress, he says we’re going to need the “genomic literacy” to have these conversations.

“Those types of issues are not necessarily fundamentally changed by the advent of new forms of technology, but they are difficult ones and they’re ones that we need to be able to support to support public reflection on.”

A less diverse world

Down Syndrome Australia CEO Mr Steff says part of that reflection includes considering the makeup of our societies.

At a macro level, he says selecting against Down syndrome goes towards “narrowing the diversity of a community”.

“There are different people all around the world, in every community, with different abilities, different disabilities, and that’s part of the rich fabric of our communities,” he says.

“It would be disappointing to see bits of that disappearing.”

He stresses that people with Down syndrome overwhelmingly consider themselves to have great lives, especially as health care, early intervention and support services have improved over the past few decades.

The life expectancy of a person with Down syndrome in Australia is now 60 years; in the 1950s, it was just 15. Those with Down syndrome were also commonly institutionalised — sometimes from birth — until around four decades ago.

Ms Hales agrees that the lives of those with Down syndrome can be as rich as anyone else’s.

An illustration of a white woman with Down syndrome, smiling. She has brown shoulder-length hair and wears glasses.
Through her art and advocacy, Ms Hales says she’s following her dream “to change the world and make it better for everyone to live in”.(ABC RN: Anna Levy)

“I’ve been living independently for the last 24 years, I’ve been going to work, I’ve done amazing shows … I’ve got a great life,” she says.

“The people out there in the Down syndrome community are some of the most inspiring people I’ve ever met.”

She has some words of advice for those choosing to go through with their pregnancies with a Down syndrome diagnosis.

“Fall in love with your baby. Just raise them as part of the family … They’re going to have a great life, with family that they love and friends.

“Don’t worry. You don’t have to be scared.”

SOURCE: ABCNEWS

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