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Down syndrome in Iceland is disappearing due to abortions

Strax

Member
Ted Cruz tweeted about this and now people have been calling the Icelandic people Nazis and claiming that they are boasting of genocide.

What does GAF say?

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

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. 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."
 
You can do the same here in the states. One of the first tests that gets done on a pregnant really early on determines if the fetus will develop down syndrome and then the doctor informs you of your options.
 

Madame M

Banned
No one is forcing anyone to get an abortion In Iceland, sorry Mr. Cruz, captain of hyperbole, that's not genocide.

What's amusing is these new laws popping up in states like Ohio where some fetuses with certain genes are protected and others are not. The Ohio law sounds like eugenics to me, not Iceland.
 

Blizzard

Banned
That's a weird way of thinking about it. Is it really eliminating Down's Syndrome if a bunch of women have to have abortions because of it? Like, the percentage of pregnancies with Down's Syndrome involved could be really low or high. If it kills your successful birth rate that's still an issue I would think.

I wonder if there are any possible leads to correcting or avoiding it to prevent the issue entirely. I guess in the future people will be able to genome-edit their baby or something to avoid it anyway.
 

Temascos

Neo Member
While abortion is not an easy choice to make (I was originally going to have a twin born at the same time as me, but the other child had to be terminated due to the risk on both of us and my mother, and I'm thankful both me and my mother are alive today, but it still does break her heart), it's the right call when it comes to complications that basically stop the child from living a normal life, or indeed a life at all.

Also, there's irony that Ted Cruz and his ilk criticising the Icelandic government on this and calling them Nazis.
 

Dynasty

Member
Morally I am against abortion, I view it as murder but pragmatically I would never want it made illegal. In the US it is baffling seeing pro-life people, wanting and pushing for abstinence-only education since it goes against reducing abortion.
 

cr0w

Old Member
It's an option for the parents and ultimately their choice, and one they'll have to accept and live with. I don't see a problem with people being allowed to make their own decisions.
 

c0de

Member
If abortion is ok, why isn't this?

I think that when you get the results that there is a possibility that your child will have the down syndrome it already reached a point where it's considered more of a human being than when usually abortions happen. So it's more a question of when and not why if this has any meaning at all for people being fine with abortions.
 

SRG01

Member
That's a weird way of thinking about it. Is it really eliminating Down's Syndrome if a bunch of women have to have abortions because of it? Like, the percentage of pregnancies with Down's Syndrome involved could be really low or high. If it kills your successful birth rate that's still an issue I would think.

I wonder if there are any possible leads to correcting or avoiding it to prevent the issue entirely. I guess in the future people will be able to genome-edit their baby or something to avoid it anyway.

It's not possible to gene edit out Downs Syndrome from an embryo as it's a chromosoidal disorder.

However, it may be possible to prevent or edit out the chromosoidal disorder from occuring in the first place.
 

Tigress

Member
If abortion is ok, why isn't this?

Agreed... which is why I don't have a problem with this as I honestly don't have a problem with abortion (to a certain point. For me it depends on if the child is aware of itself enough to be a different person vs. a bunch of cells).

And honestly, if some one isn't ready to take care of a baby that is going to take a lot more care (and money), then why should they be forced to have the kid? Why not prevent it before it is a life and therefore keep a kid from going into either a bad situation or having to be in foster care hoping to find some one who will willingly take on the challenge? Is it really fair to create a life knowing it probably isn't going to have a good one?
 

c0de

Member
That's a weird way of thinking about it. Is it really eliminating Down's Syndrome if a bunch of women have to have abortions because of it? Like, the percentage of pregnancies with Down's Syndrome involved could be really low or high. If it kills your successful birth rate that's still an issue I would think.

I wonder if there are any possible leads to correcting or avoiding it to prevent the issue entirely. I guess in the future people will be able to genome-edit their baby or something to avoid it anyway.

Yes, it's not like a virus that spreads itself. It can happen to every woman.
 

Blizzard

Banned
It's not possible to gene edit out Downs Syndrome from an embryo as it's a chromosoidal disorder.

However, it may be possible to prevent or edit out the chromosoidal disorder from occuring in the first place.
Thanks for the correction. I'm definitely not educated enough on the biology involved.
 

Vamphuntr

Member
I'm ok to do it for Down Syndrome since your child is going to be in trouble and unable to take care of himself. People don't deserve a life of suffering. My gripe is that if we start to normalize this, how far are we going to go with advances in genetic testing.
 

Sulik2

Member
Morally I am against abortion, I view it as murder but pragmatically I would never want it made illegal. In the US it is baffling seeing pro-life people, wanting and pushing for abstinence-only education since it goes against reducing abortion.

Yup if you are truly pro-life then you realize the best way to stop abortion is easy access to sex education and birth control. Most pro-lifers in the states are just crazy religious people or closet misogynists who don't actually care about the welfare of the women.
 

Kinyou

Member
It's pretty tough, as it's essentially saying that a live with down syndrome isn't worth living, on the other hand, I'm not sure I'd be able to take care of a child with a condition like that.
 
Instead of denigrating people born with Down Syndrome I'm just going to say the right to choose means the right to choose for any reason and leave it at that
 

spons

Member
I'm ok to do it for Down Syndrome since your child is going to be in trouble and unable to take care of himself. People don't deserve a life of suffering. My gripe is that if we start to normalize this, how far are we going to go with advances in genetic testing.

Might as well develop a test for classical autism and remove those fetuses as well.

Where to stop though.
 

JaggedSac

Member
This is great news.

If Teddy wants to force people to have high risk down babies, he should be forced to take care of them once they are born.

Might as well develop a test for classical autism and remove those fetuses as well.

Where to stop though.

People aren't forced to have abortions. They are just given information about the risk that a resultant baby will have issues. If you want to have a baby with a high risk of downs, go for it.
 

Pinkuss

Member
I'm of course for a womans right to choice and at early stages the moral issue is low as it's better off for all involved and a life really hadn't developed. (I'll always be pro abortion for many reasons too).

The whole downs thing though and abortion feels odd though (not that I'm against it as heck I've not been there and who can judge how severe it will be) as I've had downs in laws (brother) in the past and he was relatively mildly forms and who where very intelligent. I also grew up around my mum caring for people with these disabilities with her having a lot of empathy around these people and some being a lot more severe than others.
 
My older brother was born with autism. He's functionally at the level of a 2 or 3 year old. The struggle that my family went through was huge. Fighting for my brother. Fighting for proper education. Fighting the stigma from friends and relatives. Fighting fighting fighting. It was either that or have him become a burden of the state.

If my parents were weaker people they wouldn't have been able to do it. I wouldn't have been able to do it. It was something me and my wife talked about before we had kids. I don't blame anyone who comes to that kind of hard decision.
 

RMI

Banned
man that is some sick shit if you want to judge people for not wanting to raise a kid with disabilities. You think they are fucking happy about getting an abortion?

should note that my wife and I neglected to do any prenatal testing for genetic abnormalities beyond what could be determined with a maternal blood test. This is because, as explained to us by the genetic counselor, the risk of the testing was actually worse than the risk of finding anything to worry about. Let people make their own decisions.
 

FiggyCal

Banned
I still don't get praying for something that they never considered alive or having apriest come in. What are they praying for?
 

Alienous

Member
Nobody would derive joy from that choice - it's an unenviable situation for the individuals involved, and they should at least be allowed to choose the option that is the least tragic as they see it.
 

Aiustis

Member
Support abortion under any circumstances.

Respect people's choice to have children with special needs.

Support services for people with special needs.
 

mrklaw

MrArseFace
I think the complication comes from the question of choice

Abortion is there to allow women to terminate an unwanted pregnancy - maybe they aren't ready for a child, there was a failure of contraception.

But in these cases with screening, I would assume most/all of the women wanted the pregnancy (or they would have had an abortion already). So the question of choice is no longer 'do you want a child' - it's 'do you want *this* child'

I don't know how I feel about this. Luckily both of our children were born healthy but I have a cousin with a severe disability from birth. What about choosing because you screen and find out it's a girl but you already have girls and really want a boy? At what point should choice be limited?
 

commedieu

Banned
You can live a great life with downs. But, that's on the parents. As it should be.

Im not a good enough person to raise a child with it. talked to my partner about what we would do if it happened.

Not my greatest moment.. I mean watching the progress of a embryo turn into my daughter, it's hard to not see it as a human being. Vs a problem to abort. It's still up to women to decide what is best for their body and life.

Massive respect for people that choose to raise children, regardless of society.
 

kruis

Exposing the sinister cartel of retailers who allow companies to pay for advertising space.
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It's better for the parents to abort an embryo with Down than to carry on and have a miserable life because they can't cope with the strain of raiding a mentally disabled child. I've seen it from up close, I've got an uncle with Down. My grand mother had him when she was almost 40 years old. She did her best but ultimately that child was sent off to live on an institute because he was just too difficult too handle with his severely limited mental capacity. Having a baby with Down is a no win situation for all involved. Far better for the mother to have an abortion and try again.
 

Iksenpets

Banned
I would never support mandating abortions for genetic illnesses like that, but if people choose to do that when the screenings are made available to them, then sure.
 

TechnicPuppet

Nothing! I said nothing!
I paid £600 for a special blood test because the NHS test never worked. I'm not sure what we would have done but we wanted to know.
 

Madame M

Banned
Might as well develop a test for classical autism and remove those fetuses as well.

Where to stop though.

Leave it all with the choice of of the mother and family.

When the state gets involved at all in deciding who can get an abortion it becomes eugenics. In North Dakota, fetuses with genetic "abnormalities" now have special protections while "normal" fetuses do not.
 

FiggyCal

Banned
80773ca5b9bfb9f449b3c793e23305ebaef736d3.png


It's better for the parents to abort an embryo with Downes than to carry on and have a miserable life because they can't cope with the strain of raiding a mentally disabled child. I've seen it from up close, I've got an uncle with Downes. My grand mother had him when she was almost 40 years old. She did her best but ultimately that child was sent off to live on an institute because he was just too difficult too handle with his severely limited mental capacity. Having a baby with Downes is a no win situation for all involved. Far better for the mother to have an abortion and try again.

Yeah. It's certainly tragic and not something just anyone can do.
 
I remember when I made the assumption with an ex who had a Down's Syndrome relative that we'd abort any potential child who could have it. Not a good conversation.
 

dan2026

Member
So could Down Syndrome be potentially eradicated from a genetic perspective?

If no Down Syndrome children are ever born, then the chances of those specific genetic abnormalities would eventually lessen to the point of disappearing?

I might be completely misinterpreting the science here.
 
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