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EXPOSED (Page Four)
The Washington Post
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Doctors said Jacob Turner would not be troubled by the disorder as long as he took beta blockers. Indeed, he was a healthy, energetic boy. "I'm more worried he's going to fall off a swing and crack his head than anything else," says his grandmother. But there was a catch: When Jacob's father, a self-employed computer consultant, applied for health insurance for himself and his son in late 1994, Blue Cross of California refused to issue a standard policy to his son, saying he had a preexisting condition -- his very genetic makeup. It wasn't until 1996, more than a year after California's legislature passed a genetic anti-discrimination bill, that Blue Cross relented and informed the Turners it would cover Jacob in standard fashion. "To be involved in identifying the cause of a killing disease and then be punished because you're trying to prevent symptoms from occurring in your grandson was a mind-blowing experience," says Doris Goldman. "The genetic revolution is wonderful, but we haven't addressed the problems that are going to arise." The genetic revolution has truly arrived, with all its promise and headaches, for the approximately 10,000 women who have tested for genetic mutations that predispose women to breast cancer -- women who have been forced to wrestle with excruciating questions about the consequences of genetic knowledge. Thousands of other women have decided not to get tested at all. At times, it seems that the tendency to want to know -- or to avoid knowing -- is itself part of a person's genetic makeup. In the case of a woman named Polly, it was like this: She was the youngest of four girls, and by the time she was 59 she had lost all three of her sisters to breast cancer. At the urging of her physician, she had a prophylactic double mastectomy in 1985. By then her family was part of a large NIH study into heritable breast cancer. Around 1995, the study began offering its subjects the option of being tested for the genetic mutations believed responsible for many breast and ovarian cancers -- about a tenth of all the breast and ovarian cancers in the United States. Polly sought a test enthusiastically and encouraged her children to do the same. But her daughter Sherry opted out. A 38-year-old Navy employee with a young daughter and a son, Sherry was perfectly aware of the dangers of her family history. She respected her mother's choice to get a double mastectomy and declared that if she were convinced that she had the problematic gene, she would do the same. One thing stopped her short: She did not want her genetic condition to get into a medical database. "If I want to do something with the information, I'll have to tell my doctor," she recalls reasoning at the time. "And once I tell him, he's obliged to put it in my record. And then, if I ever leave my government job, I have the potential of losing both insurance and employment." Polly did take the test, though, and to her surprise it came up negative, which means that Sherry and her children presumably will be spared -- although being free from heritable breast cancer is not the same as being free from all cancer, or even all breast cancer. But if her mother hadn't decided to take the test, Sherry still would be uncertain about her predisposition to a fatal disease -- and all because she was worried about the economic consequences of knowledge. "To have the information and not use it is no good," she explains. "So I'd rather not have the information." Privacy operates in concentric circles. There is privacy from society, privacy from friends, privacy from the family, and finally, privacy from one's self. Whether or not genetic information is used against people for economic reasons, some would argue that it is still wrong to force people to take genetic tests. There is something profoundly unnerving about the ability to foresee or even glimpse the future. In literature, it is generally an attribute of witches and wizards and people who sell their souls to the devil. Even if the idea of genetic fate is commonly exaggerated -- genes are only one factor in a person's future and not always the most important one -- the mere awareness that a life-threatening disease lurks in the genes is enough to alter a person's sense of self.
George Annas, a Boston University ethicist, believes that no testing should be done before the age of consent, unless the relevant disease strikes before that age. But some families with the breast cancer gene mutation have had their teenage daughters tested. "A surgical oncologist told me that maybe they should screen all the girls and remove the breast buds of the ones that are positive," Annas recounts. "It's child abuse. The next stage will be to screen fetuses for breast cancer. And yet it seems very natural if you're involved in prevention. Doctors will do it for all the good reasons unless there are laws against it . . . "We've got to have the right not to know." In all of these problems, of course, lie trade-offs -- between privacy and progress, between the interests of industries and the interests of individuals. Much of the current upheaval seems irreversible -- genetic mapping is an inevitable aspect of the advance of scientific knowledge, and the computerization of medical records is an inevitable aspect of the advance of technology. Yet it is worth remembering that some of the most difficult predicaments here are the consequence of a specific political decision: the collective American choice not to adopt a program of universal health care. Because 43 million Americans have no health insurance, and because many millions more fear becoming one of their number, a sick person in this country is threatened by information in a way that the sick in Europe or Japan or Canada are not. And so many people fear the power of their files: "It may seem paranoid, but if information could come back to haunt you or your kids, you aren't going to want it on the record," Annas says. "This country has decided it doesn't want universal health care, at least for now, and that means we've got a real privacy problem." Arthur Allen last wrote for the Magazine about identical twins.
© Copyright 1998 The Washington Post Company |
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