My understanding is that we have basically eradicated, almost, Down syndrome from our society — that there is hardly ever a child with Down syndrome in Iceland anymore.
What does that mean? Have they found a cure for Down syndrome? Is there a new genetic therapy that corrects the chromosomal anomaly that causes Down syndrome?
The truth is that Iceland is doing, although more efficiently than most, what many countries are doing. They test mothers for the likelihood that their child will have Down syndrome and then give them the option to abort the baby.
Am I suggesting that it is wrong to have this test?
We were offered and rejected the test for our son. We were strongly recommended to take the test with our daughter because there were indications of other chromosome problems during the pregnancy. We informed the doctors that we would not abort but agreed to take the test just to know what we would be dealing with.
In the CBS article, geneticist Kari Stefansson made this insightful comment:
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.
We should weigh those words carefully.
I think we need to ask two questions. One is whether we want a world with a disabilities. People often identify disabilities with suffering. However, the people with Down syndrome are some of the happiest people I’ve met.
I know that they are working on a similar test for autism. We have two children with autism. Even being on the severe end of the spectrum, they are full of life and love. I would never suggest that they are “suffering.” There is no part of me that wishes that they had been aborted to spare either them or ourselves the pain of disability.
Who gets to decide what life is worth living? What level of disability needs to be terminated?
I’ve no problem with genetic research into the various syndromes and disorders that are out there. We may reach a level of knowledge that some prenatal treatment may improve the quality of life.
But abortion is not that treatment. This brings us to the second question. Should abortion be used to cultivate a disability-free society?
Some may reject my attitude toward abortion as a religious dogma. After all, I’m a Christian pastor.
The truth is that I embraced the pro-life position during my time as an atheist. At a time when I didn’t believe in an afterlife, I thought that every life was worth receiving a shot. If there was no afterlife, this was the only chance we get.
The point that I’m trying to make with this post is that what Iceland is achieving is not a beautiful thing.
I would like to conclude with something from the CBS article. The article mentions a woman named Thordis Ingadottir, who received the test, was told there was only a slim chance that her child would have Down syndrome and yet he daughter was still born with Down syndrome.
If life with disability is so terrible, one might think that she would advocate that more women should take seriously the test results and abort all babies with a chance of Down syndrome.
Instead, this is what she has done:
Since the birth of her daughter, Ingadottir has become an activist for the rights of people with Down syndrome.
As Agusta grows up, “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?“