The Disturbing, Eugenics-Like Reality Unfolding in Iceland

At Quartz:

Recently, a CBS news crew traveled to Iceland, producing a report titled “Inside the country where Down syndrome is disappearing.” As much as it sounds like it, the headline is not clickbait or hyperbole: In Iceland, nearly every women who undergoes prenatal testing and whose fetus receives a diagnosis of Down syndrome decides to end her pregnancy. Each year, according to their sources, only a child or two is born with Down syndrome in Iceland.

Up to 85% of pregnant women in Iceland choose to take prenatal testing. The specific test in question, which CBS calls the “combination test,” takes into account ultrasound images, a blood draw, and a mother’s age to determine the likelihood that a fetus has Down syndrome. (Older mothers are more likely to have babies with Down syndrome because chromosomal errors are more likely as women age.)

In essence, pregnant women in Iceland—and presumably their partners—are saying that life with disability is not worth living. It is one thing to decide that a child who will never walk, talk, feed herself, or engage with caregivers may not have a good quality of life. But children with Down syndrome do not fit this description. If a woman doesn’t want to have a child with Down syndrome, their bar for what qualifies as a life worth living is set quite high. Are babies who are born deaf destined to lead a worthwhile life? What about babies with cleft palates, which can be corrected but leave a visible scar?

Here’s the interesting thing: Down syndrome, or Trisomy 21 as it is also called, is actually one of the less severe chromosomal conditions. Unlike many other trisomies (genetic conditions in which a person has three copies of a chromosome instead of the standard two), it’s compatible with life.

People with Down syndrome have an extra copy of their 21st chromosome, which causes intellectual delays and readily identifiable facial features such as almond-shaped eyes. But the way that Down syndrome expresses itself in an individual can be highly variable. About half of babies born with Down syndrome have heart defects that require surgical correction. Some children with Down syndrome grow up to be adults who go to college and get married; others never live independently...

More.