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

Last
         Updated Aug 15, 2017 2:17 AM EDT

"CBSN: On Assignment" airs Mondays at 10 p.m. ET/PT on CBS and on our streaming network, CBSN. Explore more on this topic in our "Behind the Lens" report.


With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndrome has 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.

cbsn-oa-landspitali-hospital.jpg

The
laboratory at Landspitali University Hospital, the country's  main
medical center, where the majority of Icelandic women's prenatal blood
tests are processed.

CBS News

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.

cbsn-oa-agusta.jpg

Agusta, age 7. On average, Iceland has two people with Down syndrome born each year.

CBS News

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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