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Who's Watching Your Genes.

Questionable Motives


Exactly what the company was up to with its testing, and what it intended to do with the information is unclear.


Escher believes the company was seeking to find a genetic predisposition to carpal tunnel syndrome, thereby refuting claims that the illness was work-related. And according to the EEOC, the company was "requiring employees who have submitted claims of work-related carpal tunnel syndrome to provide blood samples, which are then used for a genetic DNA test for chromosome 17 deletion -- which is claimed to cause carpal tunnel syndrome in rare cases."


A spokesman for BNSF declined to specify what tests were being done or how the information would be used, or to verify whether the company was testing for a deletion on chromosome 17. The spokesman also declined to make a medical officer for the company available for comment.


In a statement issued after the settlement, BNSF said it had requested the tests from some 35 employees, and that about 20 had actually undergone the tests. The company voluntarily terminated the tests in February, according to BNSF.


EEOC attorney Jean Kamp tells WebMD the matter is still under investigation. Meanwhile, experts in carpal tunnel syndrome and medical genetics say that whatever BNSF had in mind, a deletion in chromosome 17 would hardly be proof of a genetic predisposition to CTS.


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.

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