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Commission Sues Railroad To End Genetic Testing In Work Injury Cases

By Tamar Lewin

• Feb. 10, 2001

The Equal Employment Opportunity Commission yesterday filed its first court action challenging genetic testing by an employer, the Burlington Northern Santa Fe Railway Company.

The commission asked a court to order the railroad to end what it called the company's nationwide policy of requiring all union members who claim work-related carpal tunnel syndrome to provide blood samples for a DNA test for a condition that may predict some forms of carpal tunnel syndrome.

According to the court papers filed in Federal District Court in Sioux City, Iowa, the railroad's employees were asked for blood samples but not asked to consent to their use for genetic testing, and at least one individual who refused to provide a sample because he suspected it would be used for genetic testing was threatened with discharge if he did not submit it.

The railroad said that it had not sought blood tests on every worker who filed a claim for carpal tunnel syndrome, and that it had not tested any employees without their consent.

''According to my understanding, there were 125 claims filed for workers compensation for carpal tunnel syndrome since March 2000, and 18 instances in which we sought genetic testing,'' said Richard Russack, a railroad spokesman. ''I'm under the impression that all 18 said yes, and were tested. And my understanding is that we have not threatened anybody with disciplinary action, or taken any disciplinary action.''

Mr. Russack said that neither the employment commission nor the rail workers union, the Brotherhood of Maintenance of Way Employees, had ever contacted the railroad about the issue or sought mediation, and that the railroad first heard of the genetic-testing issue yesterday, from a reporter. The railroad is a unit of the Burlington Northern Santa Fe Corporation, which is based in Fort Worth.

One worker named in the court papers, George Avary, contended that a month after he filed a claim for work-related carpal tunnel syndrome last October, the railroad told him that he had to provide a blood sample. The papers said that he refused to do so, and that in January, the railroad told him he would be subject to discipline for his refusal.

Two other workers named in the court papers said that they had allowed blood samples to be taken, but that they did not know the samples would be used for genetic testing. The union has also brought charges on behalf of all its members.

Carpal tunnel syndrome, which can cause pain and numbness in the hands and arms, is usually caused by repetitive motion, but in some cases may have a genetic component.

''The affidavits we have tell of workers threatened with losing their jobs because of genetic testing,'' said Ida L. Castro, the chairwoman of the employment commission.

''Individuals, without their knowledge or consent, were being subjected to genetic testing that was not job-related, not necessary,'' Ms. Castro said. ''The only conceivable explanation is that the railroad wanted to use the genetic testing to argue that they would have gotten carpal tunnel anyway, so they shouldn't get workers' compensation.'' The commission acted quickly, Ms. Castro said, ''to protect workers confronted with such an egregious violation of the Americans with Disabilities Act.''

Just two weeks ago, Paul Miller, one of the commissioners, sent out a letter saying that the commission's policy was that genetic discrimination in the workplace violated the Americans with Disabilities Act, and that the commission would investigate and prosecute violations.

''Recent studies indicate that an increasing number of individuals with genetically related illnesses and conditions believe that they have been subjected to discrimination in the workplace based on their genetic information,'' the Jan. 24 letter said. ''However, while research suggests that employers have unlawfully used such information, few charges of genetic discrimination have been filed. The E.E.O.C. wants to ensure that individuals with genetically related conditions are aware of their rights under the law.''

Yesterday, however, Ms. Castro said the letter had nothing to do with the railroad case, which she said was brought to the commission's attention by the union. The current commissioners are holdovers from the previous administration.

''The commission takes the position that basing employment decisions on genetic testing violates the A.D.A.,'' Commissioner Miller said yesterday in the agency's news release. ''In particular, employers may only require employees to submit to any medical examination if those examinations are job-related and consistent with business necessity. Any test which purports to predict future disabilities, whether or not it is accurate, is unlikely to be relevant to the employee's present ability to perform his or her job.''

But legally, the question of whether the federal disabilities law covers workers with a diagnosed genetic condition, but no symptoms, is still murky. And in several recent opinions not involving genetics, the United States Supreme Court has taken a narrow view of who is covered by the Americans with Disabilities Act.

About half the states have enacted laws against employment discrimination on the basis of genetic information, and last year, President Bill Clinton signed an executive order prohibiting the federal government from using such information in employment decisions. Efforts to pass federal genetic protection legislation, however, have failed.

Just how much attention the problem of genetic discrimination warrants is open to debate.

''I can understand people who say we should guard against future problems, but there is no evidence that there's a problem of any magnitude now,'' said Dr. Phil Reilly, a clinical geneticist and lawyer who now heads Interleukin Genetics Inc., a biotechnology company in Waltham, Mass.

''For all the debate about genetic discrimination in the workplace over the last decade, there have been virtually no cases involving real people,'' Dr. Reilly said. ''My concern is that well-meaning people are making too big a deal of this, alienating people from the good in genetic tests and conveying concern that you should be scared your employers will use them against you.''

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Kristen Philipkoski

Genetic Testing Case Settled

Officials at a railroad company have settled a lawsuit by agreeing to stop the secret genetic testing of their employees.

Burlington Northern Santa Fe Railroad settled out of court last week with two unions representing railroad employees. The unions alleged that the company coerced employees into providing blood samples that would be used for genetic screening.

An attorney for the unions said that the railroad has also agreed to destroy the test results and to help get federal legislation passed to prevent genetic testing by employers in the future.

The railroad agreed to destroy blood samples from the workers who were tested and delete the results from the employees' records.

The railroad did not pay punitive damages, but agreed to pay $39,500 for the union's legal fees.

"This was about power and drawing lines in the sand, and whether employers secretly, or by coercion, can force employees to divulge their genetic secrets," said Harry Zanville, lead counsel for Brotherhood of Maintenance of Way.

The testing began a year ago on employees who filed claims for carpal-tunnel syndrome, a wrist condition caused by repetitive hand movement.

Gary Avary and other employees complained to the union about the testing in January. Avary said he had been threatened with termination if he did not agree to provide a blood sample after filing an injury claim.

Burlington Northern of Fort Worth, Texas, received a complaint from the Equal Employment Opportunity Commission (EEOC) on February 9, and stopped the testing on February 12.

In March the company apologized to employees who were subjected to genetic testing without their knowledge.

As part of the settlement, the railroad denies violating any law. A lawsuit brought by the EEOC is still outstanding. The lawsuit alleges the company violated the Americans with Disabilities Act. It is the first lawsuit brought by the EEOC involving genetic testing.

The genetic tests were intended to predict a pre-disposition to carpal-tunnel syndrome. The test, sold by Athena Diagnostics , however, is not a test for carpal-tunnel, but for a disorder called hereditary neuropathy with liability to pressure palsy (HNPP).

HNPP , sometimes results in carpal-tunnel-like symptoms, but the gene for the disease does not predict carpal-tunnel according to researchers.

"The preponderance of carpal-tunnel symptoms actually does not have a genetic basis," said Phillip Chance, chief of genetics and development at the University of Washington.

Chance discovered the gene that causes HNPP while working at the University of Utah. The university later licensed the discovery to Athena.

"The motivation was to determine whether some people had a predisposition to carpal-tunnel or whether something was happening on their job that perhaps we hadn't taken into account, that we could fix so they wouldn't be susceptible," said Richard Russack, a spokesman for Burlington Northern.

The union's Zanville thinks differently.

"The railroad was trying to avoid paying compensatory damages to people injured with carpal-tunnel," he said.

Russack said the railroad stands by an earlier statement that no one was threatened with disciplinary action.

Bills have been introduced in Congress to prevent insurance agencies from using genetic information to deny coverage or to set rates. Bill S543 was introduced by Bill Frist (R-Tennessee), the only physician in the Senate, and Sen. Olympia Snowe (R-Maine).

This and other similar bills are being received well by Congress, according to Zanville.

"There doesn’t seem to be much opposition to it except from the pharmaceutical companies," he said. "They think there should be no privacy for anybody if it stands in the way of their ability to make some money," Zanville said.

Avary and his wife Janice, a nurse in Nebraska, who helped uncover the secret genetic testing, will appear on 60 Minutes Tuesday night.

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