The increase of prenatal screening in Europe has reduced the number of babies being born per year with Down syndrome by an average of 54%, according to a study published in the “European Journal of Human Genetics“ in December 2020 by researchers from Massachusetts General Hospital (MGH) and international Down syndrome organizations.
Three years of collecting data
The research team consists of Brian Skotko, Gert de Graaf and Frank Buckley. Skotko is a geneticist and director of the Down Syndrome Program at MGH. Graaf is the education and science officer of the Dutch Down Syndrome Foundation. Buckley is the CEO of Down Syndrome Education International and Down Syndrome Education USA.
The researchers spent three years collecting data from multiple registries and databases in Europe. Their goal was to estimate the number of babies being born with Down syndrome. Furthermore they wanted to find the overall number of people with Down syndrome in the population of European countries.
The cause: Screenings and terminations
“For the period 2011–2015, we estimate 8,031 annual live births of children with Down syndrome – a rate of around 1 in every 990 live births across Europe”, the researchers document in a fact sheet summarizing their study. This number has been decreasing throughout the last few decades:
“The percentage of live births of babies with Down syndrome reduced as a result of screening and terminations has steadily risen in Europe over the past 40 years to over 50% today. Put another way, this means that in recent years there were 50% fewer babies with Down syndrome than could have been born in Europe, absent elective terminations.“
No reduction in Malta
The team discovered a wide variation in Down syndrome birth rates among the various European regions: Interestingly enough the Eastern European states had only an average of 38%. Northern Europe had an average of 51%. Southern Europe had the highest reduction with 71%.
The data shows that there are huge differences among the various countries. For example Malta has no reduction in the percentage of babies being born with Down syndrome. Moldova and Ireland had only 8%.
On the other hand, in the United Kingdom 54%, in France 68% and in Germany 50% fewer babies with Down syndrome were born between 2011 and 2015. The highest numbers had Spain with 83% and Italy with 71%. The European average was 54%. In general they counted 417,000 people with Down Syndrome living in Europe in 2015.
What are the reasons?
The study shows that there are multiple factors influencing the decision of parents aborting their babies with Down syndrome: Religious and cultural traditions, the costs of prenatal screening, the counseling of expectant couples. Even the country’s opportunities for people with Down syndrome. “In the U.S., people with Down syndrome have great opportunities to get an education, to fall in love, and to find satisfying jobs”, says Skotko.
Studies in Australia and New Zealand to come
Skotko, Graaf and Buckley have already published a similar study in the United States in 2016: They stated that annually 33% fewer babies with Down syndrome were born as a result of pregnancy terminations. Now the team plans further studies in Australia and New Zealand.
Their goal is to help governments, Down syndrome organizations and parents to cooperate and support each other: “We just feel it is so important to provide countries with accurate numbers of their citizens with Down syndrome”, says Skotko. “Massachusetts, for example, has an outstanding network of parents who are willing to talk about their lived experiences of raising children with Down syndrome to expectant couples. That nonprofit has trained parent groups in Brazil, Japan and elsewhere so they don’t have to reinvent the wheel”.
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