Lydia McGrew wrote this comment at Second Hand Smoke in response to Wesley’s post on the liscensing from the British government to screen embryos for a genetic condition that leads to severe squinting which I posted on as well here. I am posting the comment unaltered and in its entirety with her permission. I think that given Lydia’s obvious intelligence and accomplishment this really puts into perspective the insanity of this type of screening to avoid possible future manifestations of an "undesirable" genetic trait.
Apologies if I've said this before: I have a minor genetic anomaly known as Chotzen syndrome. Feel free to look it up. It's no biggie. It has some cosmetic effects and some functional ones, the latter being chiefly a propensity to deafness (though I am not deaf) and vision problems. Phenotypical manifestations vary widely, and some children require skull surgery to separate early-fused skull sutures to allow room for brain growth. But often that is not the case, as it was not for me or my children. The gene is dominant, and each child of a person with the anomaly has a 50% chance of having it. Funny facial looks are one of the chief symptoms, resulting from asymmetries in skull suture fusion. Sometimes one eye is notably lower than the other.
I am adopted and grew up not knowing why my face looked somewhat funny and why I was so short (another manifestation). It never even crossed my mind that there might be some specific "syndrome" that this manifested. My health was excellent, and I married and already had one beautiful child before finding my birth mother and being told about Chotzen syndrome. At that point I took a closer look at my lovely 4-year-old and said, "By golly, she has really high webbing between these fingers. I guess she did get the gene but it's hardly manifested at all in her." I think this is almost certainly correct. So I did a little research, realized it's no biggie, shrugged my shoulders and got on with life, including two more lovely children. The tops of their heads have funny shapes, and the third one has a low eye, like I do. They are all intelligent and happy. None required skull surgery. Nothin' to it.
But when I was first researching it, I had a conversation with a facial surgeon about what he'd seen clinically with it. After saying that people with it usually have a "very high quality of life," he _then_ came out with the suggestion that I could, if I wished, conceive in vitro and have embryos screened. It blew my mind. Here was this fellow essentially saying that I should try to make sure that someone like me or like my daughter would be bio-incinerated rather than born. Just "if I wanted to."
Designer babies, indeed.
HT: Second Hand Smoke
Outstanding post, Lydia. Have you considered writing this up in a 750 word op-ed?ReplyDelete
Great stuff...and very good to have you among the living, on our side of the fight for life!
Thanks, SK. Nope, never thought of it. I wrote it on the spur of the moment when I saw that bit about "squinting" and facial features, because it reminded me just a bit of the facial features you get with Chotzen, though the squinting Wesley was describing was obviously more severe.ReplyDelete
My hesitation about pushing it to make it a stand-alone piece is this: Even if people _are_ severely disabled the whole eugenic screening thing is wrong. Part of what struck me about this doctor was that even on his own amoral terms, this syndrome is mild, no big deal. But if it had been a big deal, screening would be wrong. So I wouldn't want to give the contrary impression by drawing a lot of attention to the fact that I'm just fine, my kids are just fine.
I still think you should publish it, but add the point that eugenic screening is wrong even if the disability is severe.ReplyDelete
Good stuff, Lydia.