Down Syndrome Nearly Eradicated in Iceland
With its tight-knit community and picturesque landscapes, Iceland has been making waves in the news for an unexpected reason: a recent study revealed that every single pregnant woman in Iceland from 2007 to 2015 whose fetus received a positive Down syndrome diagnosis chose to terminate their pregnancy (1). As a result, Down syndrome has been all but eradicated in the nation’s population, with on average only two children being born with Down’s each year (2). Even as the increased availability of prenatal testing has resulted in more abnormal pregnancies being terminated globally, Iceland’s 100% termination rate remains well above France’s 77% and the US’ 67% for chromosomal abnormalities (2).
Although Iceland has been noted for its ever-dwindling Down’s population, it remains something of an exception, a magnified version of a larger trend. At a population of 330,000, there are less people in Iceland than in Tampa, Florida (2); yet nearly 90% of the population can trace their roots back directly to their Viking ancestors, and only 6% are foreign born (1). In fact, all children born in Iceland must be named from a relatively short list of government-approved Icelandic names, a list created in an attempt to preserve the nation’s heritage (3). With such genetic and cultural homogeneity, it’s easy to see how a uniform approach to dealing with genetic abnormality has allowed such a high proportion of women to make the same decision. Icelandic laws allow for termination of pregnancy after 16 weeks of pregnancy if there’s a deformity such as Down syndrome, and a large majority of the nation’s women, up to 85%, choose to have prenatal testing done for chromosomal abnormalities (2). With the global trend leaning towards a higher rate of prenatal testing, as it becomes cheaper and more widely available, many countries are wondering if they are headed in the same direction as Iceland. Discussion emcompasses some of the deepest aspects of human rights; while some view termination of non-life threatening abnormalities a form of social progress, others view is as tantamount to eugenics.
Even within the Icelandic population, there has been significant discussion about the recent study. Kari Stefansson, a geneticist who founded a company called deCODE Genetics that has studied the genomes of nearly the entire Icelandic population, states that the high termination rate in Iceland "reflects a relatively heavy-handed genetic counseling, [which has an] impact on decisions that are not medical, in a way....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” (2).
- “Behind the Lens: Iceland's Down syndrome dilemma.” CBS News, 15 August 2017. https://www.cbsnews.com/news/behind-the-lens-disappearing-down-syndrome/.
- “‘What kind of society do you want to live in?’: Inside the country where Down syndrome is disappearing.” CBS News, 15 August 2017. https://www.cbsnews.com/news/down-syndrome-iceland/?linkId=40953194
- “Who, What, Why: Why do some countries regulate baby names?”. BBC, 1 February 2013. http://www.bbc.com/news/magazine-21229475.