Estimation of the number of people with Down syndrome in Europe

“Estimation of the number of people with Down syndrome in Europe” an interesting and important paper, published in the European Journal of Human Genetics.
The authors of this paper Gert de Graaf (Netherlands), Frank Buckley (UK) and Brian Skotko (USA) worked on a study of the European populations of people with Down Syndrome, that also EDSA members assisted. The study has been accepted for publication. Here is the scoop: 

  • From 1901 until 2015, we have stitched together registries across Europe to calculate a country-by-country estimate of the number of people with Down syndrome, the number of selective pregnancy termination because of Down syndrome, and impact of such terminations on birth prevalence and population prevalence.
  • As of the most recent years, we estimate there were 8,031 annual live births of children with Down syndrome in Europe, which would have been around 17,331 births annually, absent selective terminations.
  • The estimated reduction of live birth prevalence was, on average, 54%, varying between 0% in Malta and 83% in Spain. 
  • As of 2015, we estimate there are 417,000 people with Down syndrome living in Europe; without elective terminations, there would have been about 572,000 people with DS, which corresponds to a population reduction rate of 27%.
  • Such statistics can be important barometers for prenatal testing trends and resource allocation within countries. Disability awareness initiatives and public policy initiatives can also be better grounded with these more precise estimates.

The paper is publicly available and can be found at (along with the country-by-country statistics in our 279-page supplement).  
We have also now created this fact sheet, which summarizes the highlights of this research.  (As a reminder, my same colleagues and I have previously published this fact sheet for the United States.)
Our work comes on the heels of this journalistic piece in The Atlantic: “The Last Children of Down Syndrome,” which takes a nuanced and multi-perspective look at the impact of prenatal testing on the Down syndrome community, using Denmark as the focus point.