Due to abortions, only one or two babies with Down syndrome are born each year in Iceland, sparking debate over prenatal testing for ‘genetic abnormalities.’
Preparing for a new baby means lots of visits to the doctor and lots of tests.
One common test for mothers-to-be is screening for Down syndrome, a genetic disorder resulting from a full or partial extra copy of chromosome 21.
In the United States each year, more than 6,000 babies with Down syndrome are born, according to the National Down Syndrome Society.
However, almost none are born in Iceland.
That’s because nearly 100 percent of women in Iceland who receive a positive test for Down syndrome choose to terminate the pregnancy.
Iceland isn’t alone in having high termination rates.
In Denmark, 98 percent of pregnancies with a Down syndrome diagnosis are terminated.
In France, it’s 77 percent, and in the United States it’s 67 percent.
In Iceland, the law permits abortions after 16 weeks if the fetus has a deformity.
As a result, only one or two babies with Down syndrome are now born each year in Iceland, which has a population of 330,000.
One expert interviewed by CBS News suggested that by requiring that women be informed that prenatal testing for Down syndrome is available, Iceland is suggesting (or pushing) them to terminate a Down syndrome pregnancy.
“We try to do as neutral counseling as possible, but some people would say that just offering the test is pointing you toward a certain direction,” said Hulda Hjartardóttir, head of the Prenatal Diagnosis Unit in Landspítali University Hospital in Reykjavik.
That view is also held by Eric Scheidler, the executive director of Pro-Life Action League.
“I think that kind of [prenatal] testing is appropriate for parents who want it, but it should be used in order to prepare for caring for a child,” Scheidler said.
He believes that parents-to-be are pressured by healthcare professionals to terminate pregnancies with a “troubling diagnosis.”
“Parents are being urged to abort their children,” he said. “There’s really not a fair presenting of options being offered to parents.”
He added, “Having gotten to know several people with Down syndrome in my life, I am horrified by the thought that Iceland, and Western society in general, is rejecting these children.”
In the U.S., numerous states have attempted to restrict prenatal testing for Down syndrome, spina bifida, or more generally, “genetic abnormalities,” through legislation.
In 2016, the Missouri State Senate introduced a ban on abortions based on prenatal testing that showed a diagnosis of Down syndrome.
The bill was defeated.
According to Planned Parenthood Advocates of Missouri, anti-abortion legislators wrote that bill specifically about Down syndrome as an attempt to make it “a wedge issue in [legislators’] efforts to ban abortion altogether.”
“This is about politics and taking away women’s ability to make personal, private, and often complicated decisions,” Planned Parenthood Advocates of Missouri stated in a fact sheet. “This bill does nothing to address the serious underlying concerns about discrimination against people with disabilities.”
Officials at Planned Parenthood’s national office did not respond to a request from Healthline for an interview for this story.
A 2015 bill introduced in the Texas House of Representatives also failed. The bill would have prohibited the Department of Health from providing written information that mentioned abortion as an option after a Down syndrome diagnosis.
Advocates for people with Down syndrome are concerned by the news out of Iceland.
Sara Hart Weir, MS, president of the National Down Syndrome Society, said her organization was “deeply concerned” by the trend.
“We do not condone the actions of a country to eradicate individuals with Down syndrome,” she told Healthline.
She noted these prenatal tests are not regulated by the U.S. Food and Drug Administration (FDA).
Weir also shared Scheidler’s view that parents-to-be are not being properly informed by healthcare professionals about what life with a child with Down syndrome could be like.
“Women — even in the United States of America — are not receiving accurate, up-to-date information about Down syndrome from their healthcare providers — a vital issue we have advocated for, for many, many decades,” she said.
Weir said people with Down syndrome need to be accepted as part of society.
“In the U.S., people with Down syndrome continue to exceed expectations,” she said. “Individuals with Down syndrome live independently, go to college, work in competitive jobs, get married, live to their full potential, and lead fulfilling lives.”
Screening tests for Down syndrome are optional in Iceland.
However, the government requires that mothers be informed that such tests exist.
As many as 85 percent of pregnant women choose to take the available screening tests, CBS News reported.
The first screening test, which is administered in the first trimester, does not conclusively diagnose Down syndrome. Rather, it predicts the likelihood that the fetus may have the chromosomal abnormality.
The first consideration for medical professionals is the mother’s age, as the risk of Down syndrome increases as a woman gets older.
Next, doctors will perform a blood test that checks for abnormal levels of plasma.
Then they administer an ultrasound that focuses on an area near the fetus’ neck. According to the Mayo Clinic, “When abnormalities are present, more fluid than usual tends to collect in this neck tissue.”
In some cases, these tests are performed in two parts called the integrated screening test, and occur during the second trimester.
If initial screening suggests a likelihood that the fetus will have Down syndrome, then diagnostic tests can also be used.
These include amniocentesis, which takes samples of amniotic fluid from inside the uterus to test, as well as testing cells from the placenta.