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Who's Watching Your Genes.

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Questionable Motives continued...

 

Neurologist Gary Franklin, MD, tells WebMD that the mutation in chromosome 17 has been associated with "hereditary nerve pressure palsy," a syndrome involving a cluster of nerve-related conditions that may include carpal tunnel syndrome. But a positive test for the mutation would not be indicative of a predisposition to the condition; likewise, many people with carpal tunnel syndrome would not test positive for the mutation, he says.

 

"There is no reason to think that the genetics of [hereditary nerve pressure palsy] have anything to do with routine carpal tunnel syndrome," says Franklin, who is medical director of the Washington State Department of Labor and Industry, in Olympia.

 

Brave New World?

 

Experts say the case highlights the questionable uses to which genetic information can be put -- by employers and others with vested interests other than the health of employees -- in the new age of genetic testing. And some suggest the case may only be the tip of an iceberg.

 

"This is probably a trend that physicians and patients need to be aware of," says Victor Penchaszadeh, MD, professor of pediatrics at Albert Einstein Medical College and chief of medical genetics at Beth Israel Medical Center, both in New York. "What this company did is outrageous, violating every principle of genetic testing and labor relations. My sense is that unless there is very strong enforcement of existing laws, new initiatives may be required to prevent this sort of thing." He is also a board member of the Genetic Alliance, a nonprofit coalition of groups representing patients with genetic-related illnesses.

 

A 1998 survey by the American Management Association found that just seven of 2,133 employers surveyed acknowledged using genetic tests in the workplace. But Kathy Hudson, PhD, assistant director of the National Human Genome Research Institute (NHGRI), which helped design the survey, says the numbers may not capture the true scope of the problem.

 

Many of the respondents -- who were company human resource officers -- may not have understood what was meant by genetic testing. And Hudson points out that if companies are testing employees without their knowledge -- as appears to have been the case with BNSF -- they are hardly likely to acknowledge the practice in a survey.

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