Science Friction - genetics

HR Magazine, July, 2001 by Steve Bates

When advancements in genetics collide with privacy and discrimination concerns, sparks fly, fears increase and litigation ensues.

For years, genetic testing of unsuspecting employees has been a sort of urban legend. Claims by workers and by medical privacy advocates that employers have been secretly probing intimate medical information--and using it to discriminate in employment matters--were short on hard evidence.

But in February, that changed forever.

Mere days before government and private researchers announced that they had completed a working draft of the human genome--thereby moving genetic testing one step farther from science fiction and one step closer to practical reality--the U.S. Equal Employment Opportunity Commission (EEOC) sued Burlington Northern Santa Fe Corp. for conducting secret genetic tests on workers who filed carpal tunnel syndrome claims.

The railroad company claimed it ordered the tests to determine whether the workers actually had contracted the malady--a painful condition of the wrists and hands that often occurs after repetitive labor. But two months later, Burlington Northern agreed to a first-of-its-kind settlement with the EEOC under which the company pledged that it would not order new genetic tests, retaliate against workers who refused to take the tests or conduct such tests on blood samples already taken from more than 20 workers.

The EEOC is continuing to investigate individual railroad workers' claims of discrimination. However, in many ways the damage already has been done: The undisputed facts in the case have sent shock waves through the human resources community, serving notice that the government and aggrieved employees will try to wreak legal havoc on employers who dabble in genetic matters without justification.

Legal and scientific experts say the Burlington Northern case sheds light on technical and ethical issues that will become more complicated--and more important--for HR professionals in the coming years.

For example: How much information about a worker's health and his or her family's medical history are employers entitled to know? How should employers use this information? How should this information be safeguarded?

"It's one thing knowing that a genetic predisposition might be passed down. It's another thing to write it in that person's personnel file," says Cheye Calvo, a specialist on genetics issues with the National Conference of State Legislatures in Denver.

Further, what if there is a potential workplace hazard that puts some people at additional risk for injury or disease because of their genetic makeup? And what if an employer-sponsored genetic test could help people avoid such hazards?

Not only are there are no easy answers, but "the questions are going to get far more difficult" as the technology advances, says Calvo.

Focus on Burlington Northern

Burlington Northern is not the first employer to be assailed by claims of misuse of individuals' genetic information. Several years ago, workers at a university research laboratory in Berkeley, Calif., sued their employer over genetic tests administered over nearly two decades.

And a North Carolina agency is investigating an allegation (filed in March 2000) by a Wilmington resident that she was fired from a small, self-insured company because her bosses learned that her brother died from a hereditary ailment, one she might develop. The company denies the charge.

But it was the timing of the Burlington Northern case that "really brought the issue to the forefront," says Sophia Kolehmainen of the Council for Responsible Genetics, an advocacy group. "It really put a face on the issue."

That face was epitomized by Gary Avary, a 44-year-old resident of Alma, Neb., who for 27 years has maintained about 100 miles of Burlington Northern track. After two derailments led to many long days of squeezing the trigger on a "rattle wrench," a tool with powerful torque and vibrations that tightens bolts on rail track, the fingers on his right hand became numb and he had difficulty performing his job.

Avary had successful carpal tunnel surgery and returned to work three weeks later. But when his wife, Janice, noticed that a mandatory follow-up medical exam required him to give seven vials of blood, she became suspicious. A registered nurse, Janice Avary kept asking questions until she learned that one of the tests was supposed to determine whether her husband had a genetic trait that might make him particularly susceptible to developing carpal tunnel.

"I said `Oh my God; you haven't discussed this with us,'" recalls Janice Avary. "That's peeking into the very soul," she says. "It's very scary."

Gary Avary agrees. "It shocked me that a company like that could go that far," he says. "I don't believe they had any right to delve into that stuff," he says, adding, "I see dollar signs behind it."

Avary refused to submit to the test. He and Burlington Northern disagree about whether the company threatened to fire him for that refusal. But when he filed a complaint with the EEOC and that commission agreed to sue the railroad on behalf of him and some of his co-workers, it became, literally and figuratively, a federal case.