World Down Syndrome Day is marked on 21 March. The 2026 World Down Syndrome Day theme, “Together Against Loneliness,” focuses on raising awareness of how loneliness disproportionately affects people with Down syndrome and other intellectual disabilities, as well as their families.
Down syndrome in the Nordic countries is characterized by high rates of prenatal screening and selective abortion, particularly in Iceland and Denmark, where the number of live births has decreased significantly.
In Iceland, approximately 80–85% of pregnant women undergo prenatal screening, and studies report that nearly all pregnancies with a confirmed diagnosis of Down syndrome are terminated. As a result, only 2–3 children with Down syndrome are born annually, indicating an extremely low live birth prevalence driven by high prenatal detection and termination rates.
This has initiated concern among many people with Down syndrome and their families who claim that such systematic search for fetuses with Down syndrome is undermining the dignity of people with Down Syndrome.
The dilemmas of the real world
Ástríður Stefánsdóttir is a professor at the Faculty of Health promotion, Sport and Leisure Studies, University of Iceland, where she conducts research in applied ethics. When explaining applied ethics in short Stefánsdóttir defines it as using ethics to analyse situations and dilemmas of the real world, with the aim of gaining a better understanding and finding acceptable solutions. Her fields of interest are medical ethics, public health, research ethics, and disability studies. She has background in both medicine and philosophy. She has previously worked as a medical doctor as well as participating as an expert in policy making and drafting bills for legislation.
Regarding the statistics and figures on prenatal screenings in Iceland she is not at all denying them, but she is cautious.
- Iceland is a small population. In order to get credible facts and statistics you would need to look at a long period, a period of ten years for example to see a real shift in the figures, Ástríður Stefánsdóttir says.
She also indicates there is no doubt that we have a low incidence of children with Down syndrome born in Iceland as well as in the Nordic countries, and that is an interesting topic: we have a great welfare system and a good quality of life. This includes people with disabilities who could work, have a family and in general lead good lives.. Even if our society can offer that, we still choose to avoid the birth of children with disabilities.
Choosing instead of accepting
- We believe in choosing instead of accepting, and this is a discussion we need to be ready to take. People want these screenings in order to choose and save themselves from what is unknown.
Elective terminations have led to a substantial reduction in the number of people born with Down syndrome in Europe and the Nordic countries. This pattern is consistent with European registry data demonstrating that widespread prenatal screening combined with selective termination significantly reduces the number of live births with Down syndrome.
Among her published articles Stefánsdóttir has been the author of: ‘A world without Down’s syndrome’ – an evaluation of foetal diagnosis in light of the ethos of medicine. There she highlights the importance of listening to the views of people with Downs syndrome and their families when we discuss health policy regarding fetal screening. Currently, the focus of our health policy is only on giving choices but there is very little discussion on what these choices actually mean. Stefansdottir claims that it should be discussed more openly what the choices entail. What does it really mean to have a child with Down syndrome? What does it mean for people with Downs syndrome to have a condition that is screened for? Instead of accepting the baby as a gift prospective parents are trying to choose the best available option. They avoid the unknown.
Choices private and supported
Their choices will always be private and should be supported. But questions regarding which screening options should be available in maternity care are not a private matter. They are professional questions but also political questions that should be discussed openly. Here, the voices of people with disabilities and their families should have a central place since they have firsthand experience of what the choices entail. Instead, their voices are not given any attention as society works today, Ástríður Stefánsdóttir says.
The estimated incidence of Down syndrome is between 1 in 1,000 to 1 in 1,100 live births worldwide. Each year, approximately 3,000 to 5,000 children are born with this chromosome disorder. Down syndrome occurs when an individual has an extra partial (or whole) copy of chromosome 21. It is not yet known why this syndrome occurs, but Down syndrome has always been a part of the human condition.
See article also here in Icelandic and in Swedish
