Down Syndrome Is Nearly Eliminated In Iceland And The Internet Has Feelings
Nearly 100% of women in Iceland who receive test results indicating their fetus will be born with Down syndrome are choosing to terminate the pregnancy, leading to a near elimination of Down syndrome in Iceland. The number of babies with Down syndrome is going down in many other countries as well.
Anti-abortion activists call it eugenics; mothers who have chosen to end a pregnancy with Down syndrome call it complicated. Expectant mothers now have more information than ever about their unborn child, leading to difficult decisions. Those protesting the abortion of fetuses with Down syndrome say an ethical line is being crossed.
The facts about Down syndrome show it as a complicated genetic mutation, one that now can be diagnosed early in a pregnancy, along with other diseases and health problems. Though many with Down syndrome are able to live healthy lives, living with Down syndrome isn't easy. Though some will be able to have jobs or marry, others will never live independently.
Learn more about why women are choosing to terminate pregnancies if the fetus is likely to have Down syndrome, and the ethical debate behind this decision.
Only Two Babies Are Born With Down Syndrome Each Year In Iceland
Down syndrome is disappearing in Iceland, but not because of a medical breakthrough or health trends for pregnant women. Only one or two babies are born each year with Down syndrome because the others are terminated.
In Iceland, about 85% of women choose to do prenatal testing, which can show Down syndrome and other genetic conditions in the first trimester. The same tests are available in the United States, but only about two thirds of women terminate the pregnancy, as opposed to nearly 100% in Iceland.
Pregnancy counselor Helga Sol Olafsdottir explained to CBS News why nearly all women in Iceland opt to terminate pregnancies that screened positive for genetic abnormalities: "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 gray."
The Ethical Dilemma Behind Eliminating Down Syndrome
Geneticist Kari Stefansson, the founder of deCODE Genetics, studies the entire Icelandic population's genomes. Stefansson calls the near-elimination of Down syndrome in Iceland "heavy-handed genetic counseling," which he does not think is a good idea. When it comes to wanting a healthy child, when is the line crossed? Some argue that terminating a fetus with Down syndrome requires believing that Down syndrome should be completely removed from society.
It is no doubt a complicated question, as genetic testing becomes more widespread and other conditions - not just Down syndrome - are brought into the limelight.
What Is Down Syndrome?
A typical cell has 46 chromosomes - 23 from the mother, and 23 from the father. Down syndrome occurs when there is an extra 21st chromosome, hence the moniker Trisomy 21. People with Down syndrome have developmental delays, distinct facial characteristics, are often shorter, and can also have a higher risk of developing epilepsy and Alzheimer's, among other conditions.
Prenatal Testing Is Changing
New noninvasive tests are becoming more and more common, as well as more affordable, for pregnant women to learn more about their unborn child. These new tests are able to be performed at 10 weeks, as opposed to 16-18 weeks. As tests get more common, doctors expect more diagnoses of conditions like Down syndrome, and even more growth in the prenatal testing market.
No one is forced to get prenatal testing, but doctors often suggest it. Most of these initial tests are screening tests, which tell the possibility of a child having a condition. Traditionally, diagnostic tests give more definite results and are ordered if the screening tests indicates it may be necessary. Down syndrome is not the only test that's screened for; spina bifida, brain and spinal conditions, cystic fibrosis, and others are tested for as well.
Amniocentesis, one of the most well-known prenatal tests, involves drawing amniotic fluid via a needle through the belly. Amniocentesis is often cited as dangerous and having a risk of miscarriage; however, this risk is only about .6%.
Genetic Mutations: Turning Into A Thing Of The Past
In August 2017, a heart condition in a fetus was corrected while still in the womb. The heart condition, a hereditary one, was effectively removed - meaning that the child wouldn't pass it on to their future children. However, that's just one case. While researchers hope to be able to correct anomalies while a fetus is in the womb, that is not a widespread possibility.
Now, the best medical professionals can do is give a woman information about her unborn child's potential genetics. Some, however, argue that earlier testing makes it easier to terminate a pregnancy, and advocates for those with Down syndrome note that those with the condition can still live a full life. Even in the case of correcting conditions still in the womb, some still cite ethical concerns - what constitutes an anomaly or abnormality, and who decides?
People With Down Syndrome Are Fighting Stereotypes
All around the world, people with Down syndrome are breaking boundaries and proving that Down syndrome isn't a disability, but rather makes one differently abled. In a nurturing environment, people with Down syndrome are able to develop life skills necessary to living independently; in some cases, they even go to college.
Mikayla Holmgren, a 22-year-old woman with Down syndrome, competed in the Miss Minnesota USA pageant in December 2017, making her the first to do so. In December 2016, Jack Barlow, a young boy with Down syndrome in Cincinnati, earned a spot dancing with the Cincinnati Ballet's production of The Nutcracker.
A young woman from Australia, Madeline Stuart, signed a modeling contract, putting yet another person with Down syndrome into the national spotlight, showing that those with Downs syndrome can not only live a full life, but excel in it.