Embryonic screening allows couples to not only play God, but the devil.
It seems some couples are moseying up to the baby menu and ordering ones heavy on the defects and disabilities.
According to a recent survey of fertility clinics, four of the 190 that responded indicated they've helped families have a baby with a disability or deformity; the clinics sift through embryos, created in a lab dish, to ensure that the one to be implanted in the mother's womb carries the desired defect. The survey will be published in the journal Fertility and Sterility, and it should raise eye-brows -- and, I hope, red flags.
I can understand why some parents might be tempted to "design" their child to be better physically or smarter, but why would anyone want to create, purposely, a deformed or disabled child? As the father of three healthy children (thank God), I find myself deeply troubled. It's not that I wouldn't love a child with defects -- at least I hope I'm not that cold-hearted -- I can't imagine wishing such problems upon a child.
But Jeffrey Kahn, a University of Minnesota bioethicist, can. "It's an ethically challenging question and certainly it will trouble people," he told the Associated Press, "but I think there are good, thoughtful reasons why people who are deaf or...dwarves could say, 'I want a child like me.' ...If people in a shared culture all have the common clinical defect, then it's maybe not a defect in the traditional sense."
There seems no practice perverse or disgusting enough that it can't seek sanction, or exemption from scrutiny, by having the word "culture" invoked. No one is disputing that, in the sense of leading lives in a silent world and possessing their own language, the deaf have a culture. But there is no getting around that not being able to hear is a disability, and it's a disability that takes courage and resourcefulness to overcome.
When deaf parents make sure their children will be deaf, however, they aren't preserving a culture. They aren't teaching cultural practices and beliefs that the children, when grown, can continue to accept or reject. They are sentencing other human beings who have no choice in the matter to a disability.
These parents may talk of "deaf culture" or "dwarf culture," but underneath the bafflegab I wonder if there's not plain old envy at work. "If I can't hear, then my children won't be able to hear either. If I can't do it, neither will they."
At the very least this is selfishness. "There are good and thoughtful reasons," as the University of Minnesota bioethicist put it, "why people who are deaf or ... dwarves could say, 'I want a child like me." Like me. A New Jersey woman who considered embryonic screening said, "You can't tell me that I cannot have a child who's going to look like me." Like me. And with no chance to be anything but like me.
It is reassuring that some experts the AP contacted have troubles with designing defective babies. "It's just unethical and inappropriate," said one doctor whose Detroit lab specializes in embryonic screening, "because the purpose of medicine is to diagnose and treat and hopefully cure disease."
Such voices need to be heeded.
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