Disappearing Rates of Down Syndrome In Iceland

Rapidly Declining Down Syndrome in Iceland – The Facts of the Case

Iceland was in the headlines recently when a news channel ran a segment about the fast disappearing rates of Down syndrome in Iceland.

• Iceland with a population of about 3,50,000 has just one or two children born with Down syndrome each year on an average, in some cases after their parents got inaccurate test results. (In contrast, in the U.S, about 6,000 babies with Down syndrome are born annually according to the National Down Syndrome Society.)
• Since the early 2000’s when prenatal screening tests were first introduced in Iceland, almost 100 percent of women who were found to carry a fetus with Down syndrome underwent termination of pregnancy.
• Doctors in Iceland are required to inform pregnant women about the availability of a screening test that could demonstrate (among many other disorders) the presence of Down syndrome in their baby.

The screening test called Combination test uses an ultrasound scan, a blood test and the maternal age to determine whether the fetus will have a chromosome disorder such as Down syndrome.

• However, authorities state that the Icelandic government does not make it mandatory for pregnant women to undergo the screening test nor does it force women who test positive to undergo an abortion.
• Approximately 80 to 85 percent of pregnant women opt to take the prenatal screening test, as per the Landspitali University Hospital in Reykjavik.

"Babies with Down syndrome are still being born in Iceland," says Hulda Hjartardottir, head of the Prenatal Diagnosis Unit at Landspitali University Hospital, where around 70 percent of Icelandic children are born. "Some of them were low risk in our screening test, so we didn’t find them in our screening."

• Interestingly, the hospital where the pregnancy is terminated seems to acknowledge the operation by giving the baby’s mother a “prayer” card with the baby’s sex and weight, along with the baby’s footprints post-termination.

Mixed Reactions To Iceland’s Policy of Aborting Down’s Syndrome Fetuses

• Some of the persons interviewed for the news piece were not sure it was the right thing to do to terminate a pregnancy unnecessarily
• The birth of any child will usher in a huge change in the parents’ lives; more so when the child has a disability. The decision to terminate will largely depend on how the news is delivered to them and the picture portrayed when counseling prospective parents

“Hammering home the momentous difficulties that would await us as parents was clearly a tactical move by the doctor to push us toward an abortion,” wrote Mr. Schrad an assistant professor of political science at Villanova University when he describes what he and his wife faced when they awaited the results of the screening test.

• Many people with Down syndrome reported having a very high level of satisfaction with their lives, and family members echoed similar sentiments when they said they have become better persons for having a sibling with Down syndrome.
• Geneticist Kari Stefansson had this to say when queried about Iceland’s policy

"It reflects a relatively heavy-handed genetic counselling and I don’t think that heavy-handed genetic counseling is desirable. You’re having impact on decisions that are not medical, in a way." He added, "I don’t think there’s anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals is a fairly complicated decision."

• Says Ingadottir an activist, whose daughter Augusta now 7 years old has Down syndrome, "I will hope that she will be fully integrated on her own terms in this society. That’s my dream," Ingadottir said. "Isn’t that the basic needs of life? What kind of society do you want to live in?"

Helga Sol Olafsdottir who counsels pregnant women with a Down syndrome fetus says, "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."

In conclusion it may be said that to try and upset the balance of nature through medical science may prove costly and may not be always correct. In fact, many persons with Down syndrome lead productive lives and have a lifespan of around 60 years.

To end with the words of St. John Paul II, “A society will be judged on the basis of how it treats its weakest members, and among the most vulnerable are surely the unborn and the dying.”

References:

1. "What kind of society do you want to live in?": Inside the country where Down syndrome is disappearing - (https://www.cbsnews.com/news/down-syndrome-iceland/)
2. Patricia Heaton: ‘Iceland isn’t eliminating Down syndrome—they are just killing everyone who has it.’ - (https://www.americamagazine.org/politics-society/2017/12/04/patricia-heaton-iceland-isnt-eliminating-down-syndrome-they-are-just)
3. Has Iceland Eliminated Down Syndrome Through Abortion? - (https://www.snopes.com/iceland-eliminated-syndrome-abortion/)

Source-Medindia