In Iceland, the widespread use of prenatal testing has led to few babies with Down syndrome being given a chance at life. Iceland, which has socialized health care, mandates that pregnant women be informed about the availability of prenatal testing, and the vast majority of pregnant women opt for testing. Parents receiving bad news from tests are given counseling. After counseling, most parents choose to abort. In fact, it has been reported that only one or two babies with Down syndrome are being born in Iceland each year. Because the test for Down syndrome is not completely reliable, some parents have likely aborted perfectly healthy children; and some of those born with Down syndrome simply were not detected by tests.
The president of the Icelandic Downs Association, who is also the mother of a child with Down syndrome, believes that merely offering mothers information about prenatal testing leads them to view the disorder as something negative to be eliminated. The head of the Prenatal Diagnosis Unit at Landspitali University Hospital admits that there is some truth to that.
Meanwhile, geneticist Kari Stefansson blames the counseling for the high abortion rate. When a reporter asked, “What does the 100 percent termination rate, you think, reflect about Icelandic society?” Steffanson replied, “It reflects a relatively heavy-handed genetic counseling.” Judging by the statements of a counselor at the largest hospital in the country – where over 70% of Iceland’s babies are born – Steffanson may well have a point.
At Landspitali University Hospital, Helga Sol Olafsdottir counsels women who have a pregnancy with a chromosomal abnormality. They speak to her when deciding whether to continue or end their pregnancies. Olafsdottir tells women who are wrestling with the decision or feelings of guilt: “This is your life — you have the right to choose how your life will look like.”
This counselor went on to say,
“We don’t look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder — that’s so black and white. Life isn’t black and white. Life is grey.”
Perhaps abortion rates would be a bit lower if parents were told about the following studies. Contrary to what many might expect, a “study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked.” How many perfectly healthy adults feel that way?
Additionally, parents and siblings of those with Down syndrome appear to be positively impacted as well.
Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome… Among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.
Furthermore, a US study showed that the average cost of raising a child with Down syndrome is modest – just $84 more per month than the average cost to raise a child without the disorder. This is true because health insurance covers much of the additional costs incurred due to the disorder.
While insurance companies might like to save money by pushing their customers to abort their children with Down syndrome, they would likely face a public backlash if they did. And the public relations fiasco and lost business would likely outweigh any savings from such a scheme.
Unfortunately, when the government is largely funding health care, it has both the ability and a perverse incentive to encourage eliminating costly patients; and Iceland is no exception. In recent years, Iceland’s government and healthcare sector have been under tremendous pressure with growing wait lists and health professionals striking, resigning en masse, or going abroad due to low wages. Given Iceland’s experience, advocates for those with Down syndrome and other vulnerable groups who support socialized medicine should seriously consider the ramifications of allowing the government to play such a large role in health care.
Richard McCarty is the Director of Research for Americans for Limited Government Foundation
