Fear of insurance trouble leads many to hide, shun DNA tests

"It's pretty clear that the public is afraid of taking advantage of genetic testing," said Francis S. 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."

Caught in a bind

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, who does freelance accounting from home and has health insurance through her husband's employer, 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.

"Something needs to be done so that you cannot be discriminated against when you know about these things," she said. "Otherwise you are sicker, your life is shorter and you're not doing what you need to protect yourself."

Employers say discrimination is already prohibited in the workplace by the Americans with Disabilities Act and existing 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-care costs from trying to screen out employees they know are more likely to get sick.

Courts have yet to rule on the subject. When the Equal Employment Opportunities Commission sued the Burlington Northern Santa Fe Railway for secretly testing the blood of employees who had filed compensation claims for carpal-tunnel syndrome in an effort to discover a genetic cause for the symptoms, the case was settled out of court in 2002. And in 2005 when Eddy Curry, then the center for the Chicago Bulls, refused to take a genetic test to learn if he was predisposed to a heart ailment, the team traded him to the New York Knicks.

Insurers say they do not ask prospective customers about genetic test results, or require testing. "It's an anecdotal fear," said Mohit M. 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."