March 21 is World Down Syndrome Day.
Temple Grandin wrote:
It is likely that genius is an abnormality. If the genes that cause autism and other disorders such as manic-depression were eliminated, the world might be left to boring conformists with few creative ideas.
Down Syndrome is not genius, at least not in the intellectual sense. If I could wave my hand and eliminate that third copy of the 21st chromosome, I imagine I would do so. But would that be a good thing? The more I hear from families of children with Down Syndrome, the more I wonder if these people have something important to offer the world that shouldn't be thrown away.
Even if eliminating the genetic defect that results in Down Syndrome would be best for all concerned, I know for a fact that eugenics is not the right way to effect a cure.
The population of people with Down Syndrome is diminishing rapidly, not because someone has cured the condition, nor found a way to prevent its occurrence, but simply because more and more babies with Down Syndrome are killed before they have a chance to be born. Prenatal testing to determine the presence of that extra chromosome is widespread, and more and more parents are opting for abortion rather than meet this challenge.
It's not my place, here, to judge another person's response to a difficulty I have never faced. But as a society we need to be aware of exactly what we are doing. There have been other times in our history when we have made deliberate efforts to eradicate the "unfit," and those actions have been rightly condemned by subsequent generations.
What about genetic engineering/CrisperCas9?
Good question. I know next to nothing about it. This article popped up in a Google search and seems to hit many of the issues. The possibility of gene therapy in the future is in the air enough to be raising the question. The same ethical dilemma has already been faced by Deaf parents of Deaf children over the cochlear implant. There will be no easy answers.
Temple Grandin has stated that if there were a cure for her autism, she would refuse it.
I am currently reading a work of Sci Fi fiction, where the heroine has autism. A first in my reading experience. She is also a genius at the job she has chosen to do and at fast thinking in general. And yes, it's likely the autism and the genius are somehow linked. But when it comes to Down's syndrome, I have witnessed the horrendous problems of a particular family in CT and find this a dilemma I can only thank God I have been spared.
I too am very grateful not to have been given this challenge, but we know a couple of families who have embraced it, just as another family I know embraced their daughter who was born with only one arm, and another whose child has daunting chromosomal challenges much rarer than Down's. Not to mention my friend who lovingly and sacrificially cares for her mother who has dementia. We do what we have to do.
Our Swiss daughter has friends who sacrificed a good deal to adopt a girl from Armenia with Down Syndrome, and from what I hear they've so far considered her well worth the cost.
Perhaps not as much as with the autism spectrum, but there are differing degrees of disability with Down Syndrome also, and the prognosis is better today than in the past. In the comments on this article, people are split on the issue of trying the gene therapy (if it becomes available) for their children. For some the difficulties are so great they would take the chance; for others, they would not do anything that would risk changing the personalities of the children they love and admire.
