Iceland "Cures" Down Syndrome: Should America Do the Same?

Should any society actively eliminate Down Syndrome or any other "abnormality?"

Posted Jan 02, 2018

During the summer and fall of 2017, we learned that Iceland, and other countries are "curing" Down Syndrome using prenatal screening, genetic counseling, and, ultimately, terminating pregnancies deemed to be "undesirable." It is ironic that proponents of this approach to “treating” Down Syndrome consider prenatal screening, genetic counseling, and then terminating the pregnancy to be a "cure." A review of the origin and etymology of the word “cure” when considering this important societal question is illuminating.

According to the Merriam-Webster online dictionary[1] “the Latin noun cura had the general sense of “the care, concern, or attention given to something or someone.” It might refer to “medical care or healing.” …the word [was also used by some religious groups] chiefly in regard to “the care of souls,” since that was one of their main concerns. The word passed into French as cure and then into English with this spiritual sense. The English noun curate, meaning “one who takes care of souls, a member of the clergy,” developed from this sense. Later the medical senses of cure became more common.”

It is sad to contemplate that a word that for centuries meant “the care of souls” has now come to mean “making sure that people with Down Syndrome are never born." One could argue that “eradicate” or “purge” or even “cleanse” are much more accurate words than “cure” to describe any social movement to heal Down Syndrome.

Human society has been down this path before—many times—with uniformly horrific consequences. For example, the Holocaust in Germany was preceded by the elimination of “undesirable” people with cognitive impairment and other disabilities. And, although autism was not described until the early 1940s[2] and the cause of Down Syndrome was unknown until the late 1950s, video records of the people rounded up makes it clear that individuals with autistic symptoms and with Down Syndrome were prominently included in the groups of “useless eaters” rounded up—and ultimately “cured” by society in Nazi Germany3.

Of course, after that door was opened, the definition of precisely who was considered “undesirable” Nazi society needed to “cure” itself of subsequently was expanded to mean that people of Jewish heritage should be “treated” and “cured” using exactly the same arguments—and lethal procedures—as those with Down Syndrome, Autism and other forms of disability.   

But surely, the world has long since learned that lesson so that these atrocities could never be repeated today! Right? After all, people with Down Syndrome have a Chromosomal “abnormality,” and carry an extra copy of Chromosome 21 whereas most people only have two copies of all of their Chromosomes, including having two of number 21. And it is clear that people with Down Syndrome often look different, think different, and talk different than “everyone else.” Besides, it costs society—not just a family—a lot of extra money to provide medical care and to educate people with Down Syndrome. It is simply beyond the pale to think—in this day and age—that any society would ever recommend—much less enforce—prenatal screening, genetic counseling, and then terminating a pregnancy as a cure for “normal” people.

Sadly, precisely this same kind of thinking has more recently been applied to a different—and far more common—“Chromosomal condition.” Namely, nearly half of all babies born all over the world have two “X” Chromosomes. Most societies welcome these happy additions to their families and embrace raising these wonderful children without any qualms whatsoever. But other societies, including one country with a higher population count than any other in the world, deemed babies with X and Y Chromosomes to be preferable to those born with two X Chromosomes.

Of course, having two Xs simply means a baby will be born with the physical sex characteristics of a female whereas having an X and a Y means a baby will be born with male sex features. But as with the three 21s in Down Syndrome, it is possible to determine whether there are two Xs instead of an X and a Y before birth—and thereby enable a societal “cure” for being born with XX Chromosomes.

So, tragically, it is not surprising that a societal bias towards male babies results in precisely the same “cure” for babies with XX Chromosomes as Iceland provides to those born with three 21s; namely prenatal screening, genetic counseling, and then terminating the pregnancy. A recent paper noted: “In the absence of manipulation, both the sex ratio at birth and the population sex ratio are remarkably constant in human populations. Small alterations do occur naturally; for example, a small excess of male births has been reported to occur during and after war. The tradition of son preference, however, has distorted these natural sex ratios in large parts of Asia and North Africa. This son preference is manifest in sex-selective abortion and in discrimination in care practices for girls, both of which lead to higher female mortality.”[3]

What does it say about a society—even an “enlightened” one—that actively uses prenatal screening, genetic counseling, and then terminating the pregnancy as a "cure” for  “undesirable” Chromosomal or genetic traits?  Perhaps one-day genetic engineering will finally convey perfection on the human race. Until that day comes, no human being is genetically—or otherwise—perfect so that—to some extent—every single one of us is vulnerable to “cure” if the measure is genetic “perfection.” Worse, none of our as yet unborn children or grandchildren are safe from such a horrific philosophy.

What is the societal value of children with “undesirable” traits? In the CBS story on the cure for Down syndrome in Iceland, one of the people mentioned in the story was a "mistake" in the genetic testing who missed out on being “cured:” a seven-year-old girl named Agusta and her mother Thordis Ingadottir. The article mentioned that “When Thordis Ingadottir was pregnant with her third child at the age of 40, she took the screening test. The results showed her chances of having a child with Down syndrome were very slim, odds of 1 in 1,600. However, the screening test is only 85 percent accurate.” The reaction of Agusta’s mother to unexpectedly raising a child with Down Syndrome is inspirational: “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?"[4, emphasis added]

Of course, all civil societies should respect every family’s autonomous decision as to when they wish to have a child. But it is altogether different for society to intrude upon and run roughshod over a family’s decision under the guise of promoting a societal “cure.” 

This is true in America too. Last night, when I was in a local grocery store, I was so very pleased to see my friend “Lou,”[5] a twenty-something man with Down syndrome who sometimes works there. I had to stand in line to greet him because so many of the people shopping at the store were busy saying hello and asking how things were going. And his face lit up every time he saw an old friend or made new ones.  

I have known Lou since he was in preschool and can attest that he has a wonderful family and has had a positive impact on the lives of countless people; neighbors, schoolmates, healthcare professionals and well, everyone that has ever been infected with his broad smile and good nature. I defy anyone to show me—or anyone else that knows Lou—how our society—or any society—could possibly benefit if prenatal screening, genetic counseling, and then terminating pregnancy had “cured” Lou of his Down Syndrome.

References

[1] https://www.merriam-webster.com/dictionary/cure accessed 12/31/2017

2 Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2(3), 217-250.

3 Mostert, M. P. (2002). Useless eaters: Disability as genocidal marker in Nazi Germany. The Journal of Special Education, 36(3), 157-170.

[3] Hesketh, T., & Xing, Z. W. (2006). Abnormal sex ratios in human populations: causes and consequences. Proceedings of the National Academy of Sciences, 103(36), 13271-13275. Quote on p. 13271.

[4] https://www.cbsnews.com/news/down-syndrome-iceland/ accessed 12/31/2017

[5] Not his real name