新編大學(xué)英語(yǔ)第四冊(cè)u(píng)nit10 Text D: How the Gene Test Can Affect Your In

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UNIT 10 AFTER-CLASS READING 3; New College English (IV)

How the Gene Test Can Affect Your Insurance

1 Jamie Stephenson has seen first-hand what modern genetic science can do for a family. When her son David was 2 years old, a pediatrician noticed signs of mental retardation and developmental delays. A lab test confirmed the diagnosis, and the Stephensons spent several years learning to live with it. When David was 6, he visited a neurologist, who scribbled "hereditary mental retardation" on an insurance-company claim form. The company responded promptly by canceling coverage for the entire family of six. There is no medical treatment for his mental retardation, and none of David's siblings had been diagnosed with the condition. "The company didn't care," Stephenson says. "They just saw a positive genetic test and said, 'You're out'".

2 No one would argue that genetic tests are worthless. Used properly, they can give people unprecedented power over their lives. Prospective parents who discover they're silent carriers of the gene for a disease like Tay-Sachs, which causes death by the age of 3, can make better-informed decisions about whether and how to have kids. Some genetic maladies can be managed through medication and lifestyle changes once they're identified. And while knowing that you're at special risk for cancer may be an emotional burden, it can also alert you to the need for intensive monitoring.

3 The catch is that no one can guarantee the privacy of genetic information. Outside of large group plans, insurance companies often scour people's medical records before extending coverage. And though employers face some restrictions, virtually any company with a benefits program can get access to workers' health data. So can schools, adoption agencies and the military.

4 How often is genetic information used against people? No one knows, but there are signs that discrimination is fairly common. In one recent study, more than 200 instances were documented in which people experienced genetic discrimination. Many participants told of losing their health and life insurance. But that wasn't their only problem. One respondent was denied a job selling insurance after he disclosed that he had a hereditary disease that can be treated for about $1,200 a year. A social worker who had excelled during her first year at a Wisconsin healthcare company was quickly forced out after mentioning that her uncle had Huntington's, a brain disease that victims' offspring have a 50 percent chance of developing. A woman in the early stages of Huntington's disease was unable to place her child with a private adoption agency. A public agency took the child, eventually matching her with a couple who had previously been rejected themselves because one partner carried the Huntington's gene. "It's a stark commentary on how society regards people at risk," they said.

5 Not surprisingly, people from high-risk families have come to fear tests almost as much as the disease. It is estimated that only 15 percent of the people with a Huntington's afflicted parent choose to learn their own status. Discrimination isn't their only concern; virtually everyone testing positive for the Huntington's gene develops symptoms during middle age, and doctors can do nothing to help. But people who might benefit from genetic tests are almost as leery. When researchers surveyed 279 people from families plagued by lung cancer, only 43 percent wanted to have gene tests that might gauge their own susceptibility. Many said the prospect of discrimination scared them off.

6 Besides depriving people of potentially useful information, the fear of discrimination can hamper scientific progress. Barbara Weber, a geneticist, often asks those who learn they carry the Huntington's gene to take part in confidential follow-up studies. She wants to know which strategies are most effective for preserving their health. "We have the tools to answer these questions," she says. "All they have to do is tell us how they're doing every six months." Yet 75 percent of the people she approaches say no.

7 The federal government is now taking steps to make genetic information less threatening. A recently enacted health insurance act bars insurers from treating genetic mutations as "pre-existing conditions" unless they are causing illness. The act also guarantees coverage to anyone leaving one group plan for another, whatever his pre-existing conditions. That will make switching jobs easier for many people, but ethicists say the act is only a first step. Because it covers only group plans and doesn't deal with disability insurance, the act won't do much for people like Theresa Morelli, who applied for independent coverage several years ago. Morelli was 28 and in perfect health when she met with an insurance agent and paid her first premium. A month later, she got her check back, along with a letter saying her application had been denied because her father had Huntington's disease. Morelli's father had in fact received that diagnosis erroneously, it turned out and her doctor had made a note of it in her chart.

8 The restrictions on employers are also full of holes. A disabilities act bars companies from discrimination against people with disabilities and it defines that term broadly enough to include genetic mutations that have yet to cause symptoms. But the act does nothing to prevent employers from gathering medical information. As long as employers have access to genetic information, they'll have an irresistible incentive to use it.

9 Lawmakers are now racing to strengthen the protections. At least 15 states in the U. S. have recently placed restrictions on insurers or employers, and Congress will consider several bills in the new session. The insurance industry argues that it should be free to charge people rates that reflect their risks, at least when dealing with individuals and small companies. But most ethicists contend that where health coverage is concerned, people shouldn't be penalized for risks they can't modify.

10 Discrimination isn't the only potential downside to genetic testing. Some of the new susceptibility tests can only vaguely predict illness and no one forces the companies that offer them to counsel patients about what the results actually mean. Even when the tests are sound and the results secure, the knowledge they create can dash hopes and divide families.