Headlines and reporting continue to roll in on the news of scientists shutting off the extra 21st Chromosome in cells in a petri dish. In another column, a father ponders some of the same issues that have been on my mind with this news.
FOX News headlined its discussion of the development: “Genetic advance in fight against Down syndrome.” While there may be some researchers who are “fighting against Down syndrome,” I doubt many would describe their work that way.
Separately, in the Irish Independent, Brendan O’Connor, explored what this possible treatment means for his daughter, Mary.
She is just Mary, and in a way, her extra chromosome is just part of who she is.
Obviously it influences a lot of who she is; think of it like a rock with Tramore written through it. Trisomy 21 is written through Mary, through every cell in her body. But somehow it just blends in and she is who she is. She is not our imperfect child. She is not a broken child. She is not the child we should have had with an alien added on, dwelling in her, or a shit version of what we should have got. She is just Mary. Obviously, as her dad, I think she’s perfect.
But, O’Connor recognizes that parents treat their children with Down syndrome for all sorts of conditions associated with having an extra 21st Chromosome: from being outfitted with hearing aids to compensate for the smaller ear canals that result in many individuals with Down syndrome having hearing loss to the more invasive surgeries to treat some of the heart problems that happen in about half of children with Down syndrome.
Treating the genetic basis–treating “the Down syndrome”–however, strikes O’Connor has different than these otherwise typical forms of medical treatment. He refers to Andrew Solomon’s book, Far from the Tree (which I reviewed here), and how parents often seek to treat their children who are different from them. But, in doing so, as Solomon writes, parents may be replacing the child they had with a “stranger behind the same face.”
The promise of a “cure” for Down syndrome, O’Connor rightly notes,
It is an incredibly complicated question that forces us to confront the most fundamental, existentialist questions of identity and humanity.
Because it is such an incredibly complicated question, I continue to wrestle with it myself. I commend O’Connor’s full column to you as I continue to work out my response to this news.
What is your position on shutting off the extra 21st Chromosome that causes Down syndrome?
There’s nothing to be fixed. The Doctors have started with a false assumption that some-thing is wrong. Sure, manage effects, but don’t change who they are.
I’ve got to agree with Mike. I’m as shocked as you are, Mike. 😉 Nothing to be fixed at all. Comfort from pain, manage illness, sure. But nothing needs to be fixed.