Facts about Down syndrome and pre-natal screening in Iceland
The Icelandic Ministry of Welfare considers it urgent to present the following facts due to incorrect and misleading information which has repeatedly been spread abroad concerning the birth of children in Iceland with Down syndrome. Among the misconceptions which have been promoted is the claim that the policy has been adopted by the Icelandic authorities of preventing mothers from giving birth to children with Down syndrome. These statements are not based on facts, and furthermore makes serious accusations which cannot simply be ignored.
Icelandic pre-natal healthcare services for mothers
All women in Iceland are offered pre-natal care, including regular health check-ups during pregnancy and post-natal assistance from healthcare professionals. During pregnancy a number of screenings are offered for clinical problems, to check for anything which could affect the mother's or child's health during pregnancy.
Screening for chromosomal disorders, such as Down syndrome, is entirely the decision of the prospective mother, who has an unequivocal right to accept or decline screening. In clinical guidelines, emphasis is placed on having healthcare personnel provide the prospective mother/parents with objective information concerning the advantages and disadvantages of screening on which they can base their independent decision.
Clinical guidelines for healthcare personnel on pre-natal care emphasise the importance of enabling every woman to take an informed decision on the service which she receives during pregnancy and it is the responsibility of healthcare personnel to explain clearly and objectively what options a woman has. The woman's decision is always to be respected. Guidelines are based on the understanding that pregnancy is a normal biological process.
Some 15-20% of women do not want fetal screening
On average, 15-20% of women choose not to have screening of the fetus during pregnancy, while 80-85% undergo such screening. Screening only reveals whether there is an increased probability of the fetus having Down syndrome, and further tests are needed to confirm this. Some 15-20% of women who are informed of the increased probability of Down syndrome following screening elect to continue the pregnancy and decline further testing in this regard. On average, during the past 10 years 2-3 children have been born each year with Down syndrome in Iceland.
Rights of the disabled and respect for diversity
For many years the Icelandic government has been working on transposing into Icelandic law provisions of the UN Declaration on the Rights of Disabled Persons. In signing the Declaration in 2007, Icelanders obliged themselves to work towards implementing it and it was ratified in Iceland in 2017. Since 2012, this work has followed a specific strategy and action plan for the disabled adopted by the Icelandic parliament Althingi, based on the UN Declaration. The current strategy and action plan in this field covers the period 2017-2021, and was drafted in close consultation with organisations for the disabled. The objectives of the programme state, for instance: “It is a core principle of Icelandic society to respect people with disabilities as part of human diversity. The full human rights of disabled persons will be strengthened, protected and ensured on equal terms with others, and conditions created enabling the disabled to live an independent life on their own premises."