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Others enter genetic underground and spend own money to gauge risks
By Amy Harmon
New York Times
Published on Sunday, Feb 24, 2008
Victoria Grove wanted to find out whether she was destined to develop a form of emphysema that ran in her family, but she did not want to ask her doctor for the DNA test that would tell her.
She worried that she might not be able to get health insurance, or even a job, if a genetic predisposition showed up in her medical records, especially since treatment for the condition, Alpha-1, could cost more than $100,000 a year. Instead, Grove sought a service that sent a test kit to her home and returned the results directly to her.
Nor did she tell her doctor when the test revealed that she was virtually certain to get it. Knowing that she could suffer permanent lung damage without immediate treatment for her bouts of pneumonia, she made sure to visit her clinic at the first sign of infection.
But then came the day when the nurse who listened to her lungs decided she just had a cold. Grove begged for a chest X-ray. The nurse did not think it was necessary.
''It was just an ongoing battle with myself,'' recalled Grove, 59, of Woodbury, Minn. ''Should I tell them now or wait till I'm sicker?''
The first, much-anticipated benefits of personalized medicine are being lost or diluted for many Americans who are too afraid that genetic information may be used against them if they take advantage of its growing availability.
In some cases, doctors say, patients who could make more informed health decisions if they learned whether they had inherited an elevated risk of diseases like breast and colon cancer refuse to do so because of the potentially dire economic consequences.
Others enter a kind of genetic underground, spending hundreds or thousands of dollars of their own for DNA tests that an insurer would otherwise cover, so as to avoid scrutiny.
Those who do find out they are likely or certain to develop a particular genetic condition often beg doctors not to mention it in their records.
Some, like Grove, try to manage their own care without confiding in medical professionals. And even doctors who recommend DNA testing to their patients warn that they could face genetic discrimination from employers or insurers.
Such discrimination appears to be rare; even proponents of federal legislation that would outlaw it can cite few examples of it. But thousands of people accustomed to a health insurance system in which known risks carry financial penalties are drawing their own conclusions about how a genetic predisposition to a disease is likely to be regarded.
As a result, the ability to more effectively prevent and treat genetic disease is faltering even as the means to identify the health risks people are born with are improving.
''It's pretty clear that the public is afraid of taking advantage of genetic testing,'' said Francis Collins, director of the National Human Genome Research Institute at the National Institutes of Health. ''If that continues, the future of medicine that we would all like to see happen stands the chance of being dead on arrival.''
Exposing condition
For Grove, keeping her genetic condition secret finally became impossible. When her symptoms worsened, she was told to come back to the clinic before antibiotics would be prescribed. But there had been a snowstorm that day, and she could not summon the strength to drive.
''I have Alpha-1,'' she remembers sobbing into the phone. ''I need this antibiotic!''
The clinic called in the prescription.
Grove allowed herself to be identified here because she said she felt an obligation to others — including some in her own family — to draw attention to the bind she sees herself in.
Employers say discrimination is already prohibited in the workplace by the Americans With Disabilities Act and laws governing privacy of medical records. But employee-rights advocates say nothing in those laws explicitly prevents employers hard-pressed to pay for mounting health costs from trying to screen out employees they know are likely to get sick.
Insurers deny bias
Insurers say they do not ask prospective customers about genetic test results, or require testing. ''It's an anecdotal fear,'' said Mohit Ghose, a spokesman for America's Health Insurance Plans, whose members provide benefits for 200 million Americans. ''Our industry is not interested in any way, shape or form in discriminating based on a genetic marker.''
Still, a recent study by the Georgetown University Health Policy Institute found otherwise. In seven of 92 underwriting decisions, insurers evaluating hypothetical applicants said they would deny coverage, charge more for premiums or exclude certain conditions from coverage based on genetic test results.
Regardless of whether discrimination actually occurs, many health professionals say the pervasive anxiety over it demands legislative action.
Geneticists complain that discrimination fears prevent them from recruiting research participants, delaying cures and treatments for disease.
At Memorial Sloan-Kettering Cancer Center in New York, the same concern is a leading reason people cancel appointments for tests that detect cancer risk.
''We are dealing with potential lifesaving interventions,'' said Kenneth Offit, chief of the center's clinical genetics service. ''It's a tragedy that people are being scared off by this.''
Victoria Grove wanted to find out whether she was destined to develop a form of emphysema that ran in her family, but she did not want to ask her doctor for the DNA test that would tell her.
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