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Nurse Derails Genetic Testing

Wife of railroad worker sparks probe that may have wide implications.


If it weren't for the protective instincts of a railroad laborer's wife, the Burlington Northern Santa Fe Corp. might still be running a genetic testing program on unwitting workers who claim their jobs gave them carpal tunnel syndrome.

But after Janice Avary asked the right questions about a medical exam the railroad demanded of her husband, Gary, Burlington Northern stopped the tests--and the Avarys became Exhibit A in a legal battle that could shape the way the nation regulates genetic testing and the use of the results.

The U.S. Equal Employment Opportunity Commission credits the 47-year-old Nebraska nurse with making a discovery that could lead to the first court test of the agency's 6-year-old position that the Americans With Disabilities Act protects workers from genetic discrimination.

In agreeing to halt the tests, Burlington Northern said it never intended to use the results to determine a worker's fitness for a job.

Since EEOC filed its court motion earlier this month, three members of Congress renewed an effort to outlaw the use of genetic information against people in the workplace or in obtaining health insurance.

The bills were defeated last session in part because opponents argued it wasn't happening.

"Genetic testing is a real and frightening problem, and it is happening right now," Sen. Edward M. Kennedy (D-Mass.) said when he reintroduced the Genetic Nondiscrimination in Health Insurance and Employment Act. "And the testing was being conducted by one of the largest railroads in the country."

Before the railroad tests became public, there was only one known case of an employer conducting genetic tests, said Jeremy Gruber, legal director of the National Workrights Institute. The Lawrence Berkeley Laboratory was accused in a lawsuit of testing thousands of unsuspecting job applicants for genetic and other conditions and settled in 1999 for $2.2 million.

"There is no case law on this," Gruber said. "This is an area of the ADA that is the great wide open."

In a whirlwind at the center of that great wide open is Janice Avary, a grandmother who has spent most of her life within a 40-mile radius of where she was born. She and her husband live off a country highway in Alma, near the Kansas state line, 200 miles west of Lincoln, the nearest city of any size. The couple took their first airplane trip two weeks ago to visit a Minneapolis lawyer about the case.

It's been a bit overwhelming for the Avarys, whose lives were once consumed by work, family barbecues and doting on their three daughters and grandson.

"Gary and I didn't ask for any of this," she said. "Just a few questions answered was all I wanted."

But the answers turned it into something more.

"If I wouldn't have been married to Janice Avary, Burlington Northern would still be doing this," Gary Avary said. "We're on a mission to make sure this happens to no one else. Somebody's got to do it."

Within the family, Janice Avary's role in exposing the genetic testing has invited comparisons to the heroine of an Oscar-nominated movie starring Julia Roberts. Oldest daughter Marie said, " 'Gosh Mom, what are you, the next Erin Brockovich?' " Janice Avary said. "I said, 'What?'

"She said, 'That movie we watched awhile back.' I said, 'Oh Lord!' "

The moment lightened what otherwise has been a serious ordeal for the family. It began last year when two trains derailed within a month of each other in central Nebraska, where, for 27 years, Gary Avary has helped maintain the same 100 miles of track in Burlington Northern's 33,500-mile system.

Working against the clock, the 46-year-old track laborer said he spent several hours a day tying new track together with bolts he tightened by squeezing the trigger of an impact wrench.

Among rail gangs, it's also known as a "rattle wrench," a reference to the powerful vibration of its torque.

Born left-handed, Gary Avary learned to use his right as a child, so he said he was able to switch hands when the rattle got too much. Still, he said, "I was just beating the crap out of my hands."

Alone, any one of the elements of the job--repetition, a tight grip, vibration and impact--are known to increase the risk of swelling in the wrist, which compresses the nerves traveling through a corridor called the carpal tunnel. "And the combination of factors is stronger than individual factors alone," said Dr. Linda Rosenstock, dean of the UCLA School of Public Health and former director of the National Institute of Occupational Safety and Health.

The tips of Gary Avary's fingers began to go numb, to the point that, he said, "I could bite down on the ends of my thumbs and it wouldn't even hurt."

Fine motor skills eluded him. He fumbled trying to attach valves to track-laying equipment, Gary Avary said. A doctor diagnosed carpal tunnel syndrome, aggravated by work, and recommended surgery to relieve pressure on the nerves, he said.

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