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Iceland Under Fire Over Controversial Method Of Nearly Eradicating Down Syndrome Births

Published on: August 20, 2017 at 4:17 PM
By Patricia Ramirez

Iceland seems to be leading the world in the eradication of Down syndrome; on average, only one or two babies suffering from the condition are born in the nation of 330,000 each year. As Mayo Clinic reports, Down syndrome is caused by an abnormal cell division involving chromosome 21 resulting in extra genetic material, which in turn results in the characteristic features and developmental delays and issues associated with the genetic condition.

Cognitive impairments resulting from Down syndrome can range from mild to severe, and deadly physical anomalies are also often associated with the disease. Roughly half of all those who suffer from Down syndrome have serious health conditions, including potentially deadly congenital heart defects. The life expectancy of those afflicted with the syndrome is roughly 60 years, and many require specialized medical care for the entire duration of their lives.

Modern medical testing and screening procedures have drastically reduced the number of babies born with Down syndrome in developed nations. The condition is often apparent while the fetus is in utero, either via ultrasound, genetic testing or a combination of the two. Ultimately, no nation on the planet has come as close to eradicating Down syndrome as Iceland , but the county’s method of doing so has many anti-abortion activists up in arms.

That’s because women in Iceland are terminating Down syndrome pregnancies at a rate of nearly 100 percent. Screening tests for the potentially devastating genetic condition have been widely available since the early 2000s, and while completely optional, the Icelandic government does require that all pregnant women be informed that the tests are available. Roughly 80 to 85 percent of women in Iceland opt for the genetic testing that screens for Down syndrome, according to CBS News.

The test is referred to as the “Combination Test,” and it considers factors such as blood test results, the pregnant woman’s age and ultrasound images to determine whether or not a given fetus has a chromosomal abnormality such as Down syndrome.

While Iceland’s widespread practice of screening for Down syndrome and terminating nearly all pregnancies where it’s discovered to exist may seem harsh, it’s hardly unheard of in the developed world. In 2015, 98 percent of Down syndrome pregnancies were terminated. In France, that termination rate was 77 percent. In the United States, from 1995 to 2011, 67 percent of Down syndrome fetuses were terminated.

Down syndrome is often not discovered until late in the 2nd trimester, which can pose a legal and ethical dilemma for some expectant mothers. However, Iceland allows for the termination of pregnancies after 16 weeks in cases of fetal deformity, including Down syndrome.

Only a couple of babies with Down syndrome are born during an average year in Iceland, and in many of those few instances it is because parents get incorrect genetic screening results. In the United States, roughly 6,000 Down syndrome babies are born annually.

According to Geneticist Kari Stefansson, the founder of deCODE Genetics, Down syndrome has been almost completely eradicated in Iceland. As his company has investigated genomes involving nearly the whole population of Iceland, he’s something of an expert on the subject. And Stefansson believes that “heavy handed” genetic counseling is to blame for the country’s nearly 100 percent Down syndrome pregnancy termination rate.

“It reflects a relatively heavy-handed genetic counseling,” he said.

“And I don’t think that heavy-handed genetic counseling is desirable. … You’re having impact on decisions that are not medical, in a way. 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.”

Hulda Hjartardottir, is head of the Prenatal Diagnosis Unit at Landspitali University Hospital. Roughly 70 percent of babies in Iceland are born within the institution’s walls, and according to Hjartardottir, it’s possible that simply offering genetic counseling and testing to all expectant mothers is pointing them in a “certain direction,” adding that there a concerted effort among medical professionals to remain neutral in the process.

When genetic abnormalities, including Down syndrome, are discovered, Helga Sol Olafsdottir (also of Landspitali University Hospital) helps to counsel the pregnant women in the midst of crisis. She tells those feeling guilty over their decision to terminate that “this is their life.”

“This is your life — you have the right to choose how your life will look like.”

Women in Iceland who choose to terminate Down syndrome fetus are given a prayer card following the procedure. The tiny memento includes the termination date and the footprints of the terminated fetus, a practice that is confusing to anti-abortion activists in America, many of whom consider terminating a pregnancy to be tantamount to murder.

The attitude toward selective abortion (or any abortion) is much different in Iceland, claims Olafsdottir.

“We don’t look at abortion as a murder. 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 grey.”

What do you think? Has Iceland truly made positive strides toward ending Down syndrome, or does their genetic screening program amount to little more than euthanasia, as anti-abortion activists widely claim? Let us know your thoughts on this controversial issue in the comments below.

[Featured Image by Denis Kuvaev/Shutterstock]

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