There’s been a lot of talk in the media this year regarding the so-called Icelandic 100% Down syndrome termination rate. It first came to my attention during the Sally phillip’s documentary, ‘A World without Downs’. Though the documentary was on the whole rather excellent, it did stray into the sensational at times.
Lately, it’s been the turn of the rabid American media to leap on this bone and squeeze every drop of sensation out of it. A CBS report had Americans enraged at the ‘eradication of Down syndrome’.
It’s Journalism 101 to report the truth. However, the prevailing attitude of news reporting seems to be one of not letting cold hard facts get in the way of a good story . In the days of clickbait and reduced memory spans and attention, it falls to writers to push the sensational whenever possible. But what are the facts? Let’s investigate shall we?
Iceland is a tiny country with a population of only 330,000. So it stands to reason that not many people with Down syndrome will be born there anyway. Similar to most developed countries, women in iceland are given the option of pre-screening for the presence of Down syndrome. Since 2000, the government has mandated that all pregnant women be informed about screening for abnormalities. Approximately 85% of women proceed with this. From this 85%, nearly 100% chose to abort if the presence of an extra chromosome in the 21st pairing is detected. Since 2008, every Icelandic baby diagnosed with Down syndrome has been aborted.
This is from a doctor in Iceland who was interviewed for Iceland Monitor in response to the CBS program:
“80 to 85 percent of women choose to have the screening, so there are 15 to 20 percent who don’t. Those women don’t want the information. Of the women who have the screening and get results that point to increased risk, about 75 to 80 percent get further tests done. 20 to 25 percent choose not to. That’s a group that after counseling and discussions can’t bear the thought of ending the pregnancy despite the Downs syndrome emerging.
While that makes for grim reading, babies with Down syndrome are still being born in Iceland-approximately 1-2 each year. I had considered the possibility that it may not be feasible for rural dwellers to get to the services required to aid those with Down syndrome. However, 99% of the Icelandic population live in urban areas, so that discounts this hypothesis.
The bottom line is that children with Down syndrome are being born in Iceland. Not many but to say that Iceland is on the verge of eradicating Down syndrome is just not true. It’s more sensationalism and negativity that frankly, we in the Down syndrome community don’t need or want. For me once again, it boils down to education and support. If the support plans are in place to help women and men raise a child with Down syndrome and they are educated about their capabilities, then maybe more Icelandic women who receive a diagnosis of Down syndrome in utero will choose to keep their babies.