Inside The Country Where Down Syndrome Is Disappearing

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Because they're aborting all the babies who have it.

"What kind of society do you want to live in?": Inside the country where Down syndrome is disappearing

cbsnews.com/news/down-syndrome-iceland/


With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndromehas significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland.

Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women -- close to 100 percent -- who received a positive test for Down syndrome terminated their pregnancy.

While the tests are optional, the government states that all expectant mothers must be informed about availability of screening tests, which reveal the likelihood of a child being born with Down syndrome. Around 80 to 85 percent of pregnant women choose to take the prenatal screening test, according to Landspitali University Hospital in Reykjavik.

"CBSN: On Assignment" headed to Iceland with CBS News correspondent Elaine Quijano to investigate what's factoring into the high termination rates.

Using an ultrasound, blood test and the mother's age, the test, called the Combination Test, determines whether the fetus will have a chromosome abnormality, the most common of which results in Down syndrome. Children born with this genetic disorder have distinctive facial issues and a range of developmental issues. Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.

Other countries aren't lagging too far behind in Down syndrome termination rates. According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it's 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity -- and Down syndrome is included in this category.

With a population of around 330,000, Iceland has on average just one or two children born with Down syndrome per year, sometimes after their parents received inaccurate test results. (In the U.S., according to the National Down Syndrome Society, about 6,000 babies with Down syndrome are born each year.)

"Babies with Down syndrome are still being born in Iceland," said Hulda Hjartardottir, head of the Prenatal Diagnosis Unit at Landspitali University Hospital, where around 70 percent of Icelandic children are born. "Some of them were low risk in our screening test, so we didn't find them in our screening."

When Thordis Ingadottir was pregnant with her third child at the age of 40, she took the screening test. The results showed her chances of having a child with Down syndrome were very slim, odds of 1 in 1,600. However, the screening test is only 85 percent accurate. That year, 2009, three babies were born with Down syndrome in Iceland, including Ingadottir's daughter Agusta, who is now 7.

According to Ingadottir, three babies born with Down syndrome is "quite more than usual. Normally there are two, in the last few years." Since the birth of her daughter, Ingadottir has become an activist for the rights of people with Down syndrome.

As Agusta grows up, "I will hope that she will be fully integrated on her own terms in this society. That's my dream," Ingadottir said. "Isn't that the basic needs of life? What kind of society do you want to live in?"

Geneticist Kari Stefansson is the founder of deCODE Genetics, a company that has studied nearly the entire Icelandic population's genomes. He has a unique perspective on the advancement of medical technology. "My understanding is that we have basically eradicated, almost, Down syndrome from our society -- that there is hardly ever a child with Down syndrome in Iceland anymore," he said.

Quijano asked Stefansson, "What does the 100 percent termination rate, you think, reflect about Icelandic society?"

"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."

Stefansson noted, "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."

According to Hjartardottir, "We try to do as neutral counseling as possible, but some people would say that just offering the test is pointing you towards a certain direction." Indeed, more than 4 out of 5 pregnant women in Iceland opt for the prenatal screening test.

For expectant mother Bergthori Einarsdottir, who chose to have the test, knowing that most women did so helped steer her decision. "It was not pressure, but they told me that most women did it," she said. "It did affect me maybe a little bit."

Over at Landspitali University Hospital, Helga Sol Olafsdottir counsels women who have a pregnancy with a chromosomal abnormality. They speak to her when deciding whether to continue or end their pregnancies. Olafsdottir tells women who are wrestling with the decision or feelings of guilt: "This is your life — you have the right to choose how your life will look like."

She showed Quijano a prayer card inscribed with the date and tiny footprints of a fetus that was terminated.

Quijano noted, "In America, I think some people would be confused about people calling this 'our child,' saying a prayer or saying goodbye or having a priest come in -- because to them abortion is murder."

Olafsdottir responded, "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."
 





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#2
if the child is to be born with physical and mental defects, why bring it into this world? why have it suffer to live a fully normal functioning life when it can never ever do that? people should have that option.

part of my opinion is based on my belief in intervention theory. if we have been genetically manipulated, and we have overwhelming numbers of genetic defects compared to other species, then i dont believe that we need to bear the brunt of this curse. all infants have a right to life-- a normal functioning life, not one filled with struggle and pain because a poor roll of the dice from the get-go. the soul can take a U turn and head right back to the god source and become reborn in a different, error-free body.
 





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#4
These are not barely functioning, brain dead specimens who need machines to survive. Do you know anyone with Down's Syndrome? They're precious.
theyre completely innocent. i agree.
but if you were given a choice as a fetus to be a fully functioning human being with all possibilities and someone with a genetic defect limiting your lifespan, your fecundity, and your mental abilities, what would you choose?
 





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#5
theyre completely innocent. i agree.
but if you were given a choice as a fetus to be a fully functioning human being with all possibilities and someone with a genetic defect limiting your lifespan, your fecundity, and your mental abilities, what would you choose?
So it's the fetus's choice? Or are you just assuming it's what the fetus would have wanted?
 





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#7
well, we were all fetuses once. knowing what you know now, what would you choose?
You mean if I was going to be born with Down's Syndrome, but somehow had the cognizance and knowledge I do now, would I choose to abort myself? Is that the question? It's nonsense. The fetuses don't have the choice, so what I would do to my mentally handicapped fetus self is completely not the issue.

When my wife was pregnant with our son we had the test done for Down's Syndrome, and regardless of the result, abortion was never an option. It is simply not our choice to make.
 





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You mean if I was going to be born with Down's Syndrome, but somehow had the cognizance and knowledge I do now, would I choose to abort myself? Is that the question? It's nonsense. The fetuses don't have the choice, so what I would do to my mentally handicapped fetus self is completely not the issue.

When my wife was pregnant with our son we had the test done for Down's Syndrome, and regardless of the result, abortion was never an option. It is simply not our choice to make.
if i was a fetus doomed (or destined, in your view) to a life of handicap, inability, and difficulty, id ask for a free pass back to the source for a rebirth assignment. i also would not want my son or daughter coming into this world in such a condition. contracting problems or deficiencies post birth is, of course, another story.

i respect your religious viewpoint.
 





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#9
wow fascinating issue. i'm not sure i agree with the doctor's view that they have eradicated the syndrome though seems they are just avoiding it, for now.
 





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#13
That's just vile, why abort a child because he or she will have Down's syndrome? You aren't protecting them from anything, they'll get the educational and local support they need, you're protecting yourself from the increased duty and responsibility- which is selfish

They really pressured me to take the Down's syndrome test and I just refused. I didn't care if my baby would be a little different, what gives us the right to intervene with the natural order and process that goes on when the baby is in the womb?
 





Etagloc

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#14
That's just vile, why abort a child because he or she will have Down's syndrome? You aren't protecting them from anything, they'll get the educational and local support they need, you're protecting yourself from the increased duty and responsibility- which is selfish

They really pressured me to take the Down's syndrome test and I just refused. I didn't care if my baby would be a little different, what gives us the right to intervene with the natural order and process that goes on when the baby is in the womb?
I bet the angels in heaven were like

 





Etagloc

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#20
Ah I see lol

I know you're anti abortion, you don't have to prove it mate I believe you
Yes but I want people to see my abortion=eugenics thread.... to further drive into people's minds that abortion=eugenics.... because it is lol. I don't know how it is in the UK but in the US they try extra hard to push abortion amongst minorities because it is part of a eugenics agenda.