Guard your genetic data from those prying eyes
Copyright U.S. News & World Report; Washington; Mar 5, 2001; Dana Hawkins;

Abstract:
Genetic testing by private employers and insurance companies is being done secretly and reasons for the testing are kept from employees. A big concern among genetic experts is that results from such test could be used to block someone from being hired or promoted, or to deny insurance. While federal workers are legally protected against genetic bias, private employees are not.


Seven vials of blood is a lot. That was Janice Avary's first thought when she heard that her husband Gary's employer, the Burlington Northern Santa Fe railroad, was requiring that amount of blood to be taken after he filed claims for a carpal-tunnel injury. As a registered nurse in Alma, Neb., Avary says, her internal alarm was tripped. When she called the company for an explanation, Avary was stunned to hear the words "genetic test."

Her queries led a railroad workers union this month to sue, seeking an end to the allegedly secret testing. BNSF says it has stopped the yearlong pilot program, but Gary Avary thinks that if his wife hadn't asked, it would still be going on. "Unless you have a medical background, you wouldn't know to ask these questions," says Janice Avary.

DNA bias. The lawsuit--the first of its kind against a private employer--was filed just as scientists first published the map of the human genetic code. While genetic advances will likely lead more patients to seek cures for inherited diseases, they are also increasing worries among legal experts and patient rights groups about how genetic data will be used, both in the workplace and elsewhere. "There's no question some employers are testing," says Michael Werner, a lawyer for Bio, a group representing the biotech industry. "And as more tests are developed and the price drops, the market is expected to grow." Even so, there are ways to protect your privacy in the workplace--or if you choose to be tested on your own.

A big concern among genetic experts is that results from such tests could be used to block someone from being hired or promoted, or to deny insurance. Already, there are hundreds of documented cases alleging genetic discrimination by employers and insurers. For example, preliminary results from a survey by the Genetic Alliance, a coalition of patient advocacy groups, show that 42 percent of 220 respondents claimed health insurance discrimination. Sixteen percent cited bias at work and in the military. The survey included such cases as a woman who alleged she was denied long-term disability insurance because the company said she had a predisposition for Alzheimer's disease. Its decision was based on a doctor's scribbled notation in her medical record that her father might have the condition. In another instance, after a first grader was diagnosed with a genetic developmental disorder, his mother's employer eliminated the child's healthcare coverage, saying the diagnosis qualified as a pre-existing condition.

Protect yourself. While federal workers are legally protected against genetic bias in health insurance and employment, private employees are not. Rep. Louise Slaughter, a New York Democrat, says support is building for legislation she cosponsored this month that would ban such discrimination. "Each of us has bad genes, and eventually they'll all be identified with diseases," says Slaughter. Even some genetic experts who advocate responsible testing, like Vivian Weinblatt, president of the National Society of Genetic Counselors, are advising patients to consider waiting for Congress to pass such a law before getting screened. "Ask yourself: Will knowing the results make my life better? Will I make different life choices? Can I wait a year?" says Weinblatt. If results will help you to treat or prevent a condition for which you're currently at risk, like colon cancer, testing may be wise. If not, or if the results could be inconclusive, says Weinblatt, then it's probably not worth the risk of a permanent flag on your medical record.

If you decide to test, experts offer this advice: Express any concerns to your physician or a genetic counselor and ask who would have access to your records. Find out whether your employer is self- insured, meaning your boss might get the bills. And consider buying life, health, and disability insurance before getting screened.

Question whether you really need to be tested. In some cases you might consider making the same lifestyle changes you'd make if you tested positive. Those with a family history of breast cancer, for example, might forgo genetic testing and instead be vigilant about regular breast exams. Also, be aware you may learn something you could later regret knowing. For instance, one of the tests for predisposition to heart disease may also reveal a risk for Alzheimer's.

Finally, become familiar with the mechanics of testing. If your employer requires blood samples, get a list of the tests to be run. And ask what happens with the blood afterward: Is it stored or destroyed? The railroad workers are still waiting to find out; their test called for only two blood samples. "What did they do with the other five vials?" asks Janice Avary. She wonders: Were other tests planned?