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McGee worries that "too many strangers are entering the room" from the beginning of the pregnancy until the day of delivery. And not just the donors, gestational carriers, and surrogate mothers, but "people with calculators." These include actuaries, public health officials, and others, some of whom want to protect the gene pool, some of whom represent shareholders of the insurance companies, and a few who want to prevent pregnancies related to diseases. Then there are the genetic counselors, whose ideology, McGee believes, is still in its dark ages. "Say you're a mom wondering whether or not to have a genetic test for cystic fibrosis," he explains. "What's your first question? It's the value question: 'What would you do counselor?' But the average genetic counselor hasn't had an ethics class, and takes an oath to be 'non-directive.' So that question isn't going to be answered by a professional. Or even engaged. We have to do better."
McGee predicts genetic counseling soon will be replaced by CD-ROMs with risk statistics and bland information about diseases. The real future of counseling and helping pregnant couples lies in training ministers, general internists, nurses, and others about genetic and family planning issues. If so, in the next century, "the people we count on to help us out with the tough family issues will also be trained to think about genetics."
McGee also worries that many of these new issues will involve what he calls "hairy confederations of state agencies and insurance companies." He gives an example that involves a whole wasp's nest of questions. "My prediction is that within five years, at least one insurance company and one state government will begin to require genetic testing of a fetus if there's a family history of a particular disease." In such cases, if the test reveals a genetic predisposition for that disease (breast cancer or iron-overload dysfunction, for examples) the insurer could, under present law in 38 states, refuse to cover that child because it would have a "pre-existing" condition. Perhaps worse, the state might require the couple to forego Medicaid coverage for their fetus and maintain a registry of genetic mutations in the family.
Where would such a situation leave the parents? If the child is born and then contracts the disease, the family could be bankrupted by the expensive treatments required. But if they decide to abort the pregnancy, they could forever be haunted by the prospect that the child might not have been afflicted with the disease.
The scenario easily might go further, McGee says. He imagines that insurers will require fertile couples whose families carry hereditary diseases to produce embryos through in-vitro fertilization. Then pre-implantation genetic diagnosis will be conducted on those embryos to determine which are prone to develop expensive diseases and which are not. "The insurance company might say, 'We will pay for you to have this expensive technology, even though you guys aren't infertile, and we want you to sort out the CF embryos and implant the ones that check out okay.' There's no reason in the world to think this will not happen within 10 years."
Couples might begin to use genetic testing in order to enhance their offspring. "A couple might produce 20 embryos for the purpose of picking out the ones that are free of diseases. It's like saying, 'Hey, we're in here anyway. We're already testing for diseases. Why not run all the tests just to make sure we get the right kind of baby?'"
That kind of thinking is very different from a woman sizing up a potential father for her child. McGee warns that it smacks of very specific expectations for the baby, "that it will be free of diseases, perhaps carry the correct gene for fast thinking, for not having addictive tendencies, for being hearing or deaf, gay or straight." Expectations are worrisome, he believes, because they can be shared -- by the insurance community, for example. "The companies would be saying, 'If you won't do that and you have a kid, then we're not going to cover that kid because you had the opportunity to prevent [the disease] and didn't.' And that's dangerous."
Anti-discrimination laws (existing in 12 states) would preserve insurance coverage for children whose parents already had such coverage, but they would not aid the uninsured, McGee notes. And a new distortion would be created. "We end up with a weird situation where the folks who have high blood pressure because they've got a gene for high blood pressure get insurance, but the ones who have high blood pressure because they eat too many hot dogs don't." A better answer, as McGee sees it, is to prohibit denial of health insurance coverage based on pre-existing conditions.
We reach our destination: WHYY, the local PBS affiliate, which is furnishing a small studio and satellite link for McGee's on-camera chat with MSNBC. He slides the Acura into a parking space across the street, dodges deep puddles and splashes from passing vehicles, and rushes through the sleet into the studio -- where he learns that the interview has been delayed for at least an hour while the network covers a live press briefing by a lawyer for the Dallas Morning News, defending his paper's report that Oklahoma City bombing suspect Timothy McVeigh confessed the deed to his lawyer. McGee hangs up his dripping raincoat and plops into a stuffed chair in the station's lobby. Waiting for his time on air is an unavoidable component of the ritual of TV appearances, which McGee regards as an integral part of his teaching and his profession -- a viewpoint that occasionally propels him into conflict with some of his colleagues, especially classical philosophers.
"Many in my discipline criticize bioethicists for being too accessible," he says. "We're not hard to find in the phone book, and we're usually pretty willing to make comments about social issues. That raises the ire of some of my friends around the country. They consider bioethicists to be the ugly underside of philosophy, because we can seem to be opportunistic."
He cites the cloning issue as a perfect example. "When this thing happened not too many of us hung up the phone. I talked to a lot of colleagues who had been asked to appear on Maury Povich and similar shows. I won't do that, but I don't fault the ones who will." He explains that while the millions who watch Oprah in the afternoon may not ever take a philosophy course, they still must make difficult philosophical decisions, such as how many children to have, what constitutes a "good life," and what to do if a parent needs nursing-home care, or even physician-assisted suicide. Continued ...
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Copyright 1997 The Pennsylvania Gazette Last modified 6/19/97