Who's Watching Your Genes.

From the WebMD Archives

April 24, 2001 -- A recently settled lawsuit pitting a railway company against its own employees could be the storyline for a sci-fi movie: A large company secretly performs genetic testing on some of its employees to determine if their workers are at risk of developing work-related injuries. Well, the story may be science, but it's not fiction.

Last year, David Escher of McCook, Neb., began to experience pain and numbness in his hands and fingers. He soon sought medical attention, but little did he know it was the beginning of an ordeal that experts say illuminates the darker possibilities in the brave new world of medical genetics.

Railroaded

McCook, who is a railroad maintenance worker for Burlington Northern and Santa Fe Railway Company (BNSF), was diagnosed in August with carpal tunnel syndrome. The condition, caused by compression of nerves in the "tunnel" connecting the wrist and hand, leads to pain, numbness, and loss of strength. A local specialist told him the condition was likely related to his work and recommended surgery.

"It got to the point where, depending on what tools I was using, the pain was going all the way up my arm and waking me up at night," Escher tells WebMD. "The surgeon told me that, of course, it was work-related. It's not like you go to bed at night and not have it, then wake up in the morning and have it."

A date for surgery was set in January. Around Christmas, however, Escher received a curious holiday greeting from BNSF headquarters in Ft. Worth, Texas: A letter directing him to report for more extensive examinations of his complaint, including blood draws.

Seven vials of Escher's blood were drawn.

"All they told me was that they need more extensive testing," Escher says. "It looked to me like they were trying to find a doctor who would tell them what they wanted to hear."

In time, Escher learned that he was not the only BNSF employee with carpal tunnel syndrome required to undergo further tests, and that the tests were far from routine: The blood was being used by the company to do genetic testing.

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In February, the U.S. Equal Employment Opportunity Commission (EEOC) filed a suit against BNSF on behalf of employees saying the company had violated the Americans With Disabilities Act. The company's genetic testing program "was carried out without the knowledge or consent of its employees, and at least one worker was threatened with termination for failing to submit a blood sample for a genetic test," according to the EEOC.

This week, in what is considered an uncommonly rapid turn-about, the suit was settled out of court, with BNSF admitting that it "tested certain employees for a genetic marker," according to the EEOC. Under the settlement, the company agreed to stop all further testing and analysis, and vowed not to take any adverse action against any person who opposed the genetic testing or who participated in EEOC's proceedings, according to the federal agency.

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.

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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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"Even if it was happening in only a modest number of companies, it would be alarming," Hudson tells WebMD.

In spite of the recent BNSF settlement, it is unclear how much protection the ADA provides from discrimination by employers using genetic information. While experts say the law clearly protects individuals with a genetically related illness or disability in which symptoms have already occurred, it is less certain how the law applies to genetic tests that suggest a worker is only at risk for disease.

Increasingly, it is these "predictive" tests that will pose the greatest challenge to protection of workers. "The genes that are being identified and tests that are being developed are predictive," Hudson says. "They can indicate that you are at some level of increased risk of developing a disease within your lifetime. The question is how we ensure that these tests are used for an individual's benefit and not in ways that can be harmful."

Are there instances in which genetic testing at the worksite might be acceptable, even advisable?

Hudson says in rare circumstances employers might test workers for a genetic susceptibility to environmental hazards they are liable to encounter regularly in work situations. But even in such cases, the testing should not be used to single out individual employees, she says.

Protection From Ourselves

In the meantime, Hudson says state laws protecting workers vary markedly and point to the need for uniform standards. "You can see some similarities, but the state laws lack uniformity in terms of defining what is protected and in terms of what would constitute a violation," she tells WebMD.

A summary of state laws governing employer use of genetic information can be found on the NHGRI web site at

At the federal level, Congress is considering a bill that would prohibit health insurance plans and employers from discriminating on the basis of genetic information. The bill, known as the Genetic Nondiscrimination in Health Insurance and Employment Act, also would require that genetic information possessed by employers be confidentially maintained and disclosed only to the employee upon request.

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Hudson notes that in 1997, the National Human Genome Research Institute issued guidelines on the use of genetic information in the workplace that have aided the formulation of laws at the state and federal level. Those guidelines state that employers should be:

  • prohibited from using genetic information in hiring or determination of benefits;
  • prohibited from requesting or requiring collection of disclosure of genetic information;
  • restricted from access to genetic information in medical records; and
  • prohibited from releasing genetic information without prior written authorization of the individual employee.

"In considering whether to take a genetic test, people need to think very carefully about how that information will affect their lives," Hudson tells WebMD. "They need to think about who will have access to it, and how it may be used. All of those topics are worthy of extensive conversation between an individual patient and his or her healthcare provider."

Today, David Escher is back at work repairing tracks after successful surgery in January. Though he has regained the feeling and strength in his hands, he says he has lost much faith in the company for which he has labored for 25 years. "I wouldn't trust them if they told me the sun came up in the east," he says. "It just makes you wonder what else they have been doing all these years."

WebMD Health News Reviewed by Gary D. Vogin, MD
© 2001 WebMD, Inc. All rights reserved.

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