GENEWATCH
 
WHEN SCIENCE FICTION BECAME FACT
By Samuel W. Anderson
 

In the summer of 2000, Burlington Northern Santa Fe railroad Corp. was dealing with two train derailments in central Nebraska. Workers went out to make track repairs, equipped with recently adopted hydraulic wrenches. The new tools were faster than their manual predecessors, but harder on workers' wrists: over a hundred Burlington Northern employees filed reports that year that their work had caused carpal tunnel syndrome. Gary Avary was one of the workers who repaired the Nebraska tracks, and in September he was diagnosed with carpal tunnel.  The railroad authorized surgery, and by the end of October, Gary had recovered from the operation and returned to work with full use of his hands - but his ordeal was just beginning.

In December the company sent Gary a letter instructing him to travel to Lincoln for a mandatory medical exam. Gary and his wife, Janice, found this strange, since Gary's carpal tunnel had already been successfully treated. Stranger yet, a co-worker returning from the same exam reported that the doctor had taken seven vials of blood. This raised a red flag for Janice, a registered nurse, and she called the company's medical liaison to see why so much bloodwork was necessary.

"She gave me a list," Janice says, "just standard lab tests, and I said, 'I'm in the medical field, and those do not require that many tubes of blood.' I got her flustered because I knew what I was talking about - and she just let it slip accidentally that they were going to do a genetic test."

When Janice protested that those tests could not be conducted without Gary's knowledge and consent, she was told that refusal would be considered insubordination and could result in dismissal.

The Avarys went on to fight Burlington Northern's practices and to testify on Capitol Hill to advocate for genetic nondiscrimination legislation. In 2001, Burlington Northern settled with the Equal Employment Opportunity Commission (EEOC), prohibiting the railroad company from carrying out further genetic testing. A settlement with the railroad workers' union required the company to destroy the blood samples it had acquired from at least 20 employees along with the records of the tests carried out on that blood. Burlington Northern also pledged to support a federal genetic nondiscrimination bill. Those results were hardly crippling for the company, but for their part, the Avarys were most interested in pushing for the legislation which would later become the Genetic Information Nondiscrimination Act. Finally, seven years later, GINA was signed into law.

"Everything's changed," Gary says. "I do feel that we made a difference - not just Janice and me, a lot of us."

Janice agrees, even if Burlington Northern got off easy in the lawsuits. "It was kind of bad the way it ended, but for me, we got the genetic testing stopped, the railroad was publicly humiliated for what they did, and as you can see, we're still talking about it eight years later."

'The gene for carpal tunnel'

Why would a company go to lengths to undertake secret genetic testing of its employees? Burlington Northern insisted that the DNA test results were never intended to factor into hiring and firing decisions. According to company statements, the tests focused on determining whether or not employees carried the genetic marker for carpal tunnel syndrome. If so, the company might be able to shed responsibility for employees' carpal tunnel complaints - and avoid paying workers compensation.

The first problem? Dr. Phillip Chance, the scientist who discovered the gene the railroad was testing for, pointed out that the genetic marker in question has little use as a predictor of carpal tunnel injuries. In fact, the gene is not linked to carpal tunnel specifically, but rather to a rare neuromuscular condition for which carpal tunnel is one of several symptoms. The railroad's medical department was either oblivious to this or perhaps simply disagreed. Either way, the brains behind the secret genetic tests seemed to believe they were doing something exciting - and something ethical.

"When Gary went for the initial interview with the carpal tunnel doctor, the doctor started talking about genetic implications for carpal tunnel disease," Janice says. "Now this is what that man does for a living, carpal tunnel surgery - and he was going on and on and on with Gary about how he was trying to get involved in different protocols to prove genetic backgrounds for carpal tunnel disease."

Once the case was underway, Gary met personally with the chief medical examiner behind the railroad's testing protocol. "I looked him right in the eye and said, I understand what you were doing, Dr. Michaels, and you can run it in front of medical people and they wouldn't see any problem with what you were doing, with the legalities - that you have the right to ask a mandatory medical exam any time you see fit. But anyone else would say, 'You're doing what? And you're not telling these people what you're doing?' And he couldn't really give me a good answer there. He just thought, in his own mind, I think, that he was doing everything right. They'd been to these conferences on genetics, and they were bent on looking for that marker [for carpal tunnel]."

Considering the cost of putting together a system for secretly testing employees - and considering that none of the at least 20 employees tested were found to have the marker in question - it would hardly seem an economical program. Indeed, Janice says the company had bigger plans for the DNA testing scheme it referred to as a "pilot program."

"They were in the process of designing a protocol to eliminate corporations from having to be responsible for any injury on the job. If they had been able to prove that back injuries, heart injuries, carpal tunnel, and other things along that line had a genetic background to them, they no longer would have to take responsibility for those payments. Then, had they been able to prove this, they would have been able to patent the protocol and sell it to other large companies."

Keeping the secret

"The entire system knew that there was this network of deceit out there," Janice says. "All of the people that had gone to this testing because it was mandatory had no idea that a genetic test was going to be included in the bloodwork. They were actually doing genetic testing without people's consent or knowledge."

Behind the scenes, railroad officials monitored a detailed DNA testing program.

"The day I didn't go to the mandatory exam, the chief medical examiner called me and said, 'Sir, I see you didn't make your appointment. Why is that?'" Gary says. "And I thought to myself - how would you know so quickly, and why would you need to know so quickly? Well, it turns out they had couriers there to take the blood immediately to the lab. The doctors were just there to draw the blood, and couriers were there to pick up my blood after they drew it."

Knowledge of the program extended throughout Burlington Northern's offices.  Janice says that the medical liaison she first spoke with "knew exactly what was going on. She knew there was genetic testing going on, she knew exactly which doctor employees were to be referred to for the testing, and the doctor they had set up to do the testing in Lincoln knew exactly what was going on.

"You get sent to a doctor in Lincoln who's doing the testing, who knows full well you're going to be genetically tested; the medical liaison knew there was a protocol; but none of the employees knew.  No one had ever notified the employees." If the Avarys sound cynical about the company's attitude, it's for good reason. During the lawsuit, the EEOC discovered documents sent between employees in Burlington Northern's offices revealing their knowledge of the testing program, even referring to it as "the guinea pig trail."

Burlington Northern's employee handbook - which was over 500 pages long - included a rule allowing the company to require mandatory medical testing, but no obligation for the company to reveal the results of those exams to employees. "That's what they were banking on," Janice says. "There was no legal recourse - they were going by that one rule in the employee handbook."

By refusing to submit to DNA tests, Gary broke the rule. For the railroad, this amounted to insubordination and grounds for dismissal. The company informed Gary that he was being investigated for disciplinary reasons and was scheduled for a hearing. The railroad later denied that he had been scheduled for a disciplinary hearing, redubbing it "an investigation," "a meeting," and "a discussion." From Gary's point of view, though, the message was clear.

"My supervisor had been on vacation, and when he came back he said, 'Gary, what have you done?' He wasn't up to speed on what had happened. He said, 'They want me to fire you!'"

"They were going to fire him, and actually did start it," Janice says. "They actually canceled our medical insurance." At least one other Burlington Northern employee who had raised concerns about the testing reported having his insurance dropped as well.

The company might have continued their secret testing if not for one seeming oversight. "I'd already had plenty of exams - my doctor released me, and I was 100%," Gary says. "So how badly did they want my blood? I was already released from the doctor, I was already back to work, and they still send me this letter - I kind of wonder sometimes if it wasn't a foul up."

"They were trying to fire him for refusing to take a medical test for a problem that had already been fixed," Janice says. "It was just bizarre, really. They just picked the wrong person, I guess, to try to force and coerce into doing something - I mean, how can you force someone to have medical tests on something you've already had fixed?"

Ultimately, though, it was Janice's medical knowhow that made her question the bloodwork, setting the whole case in motion. "Look how naïve I'd have been if my wife wasn't a registered nurse!" Gary says.

National attention

The Avarys' case attracted a flurry of news coverage. "When you expose big companies to the media ... the railroad can't take that. They really want to keep things out of the paper," Gary says. In which case, the timing couldn't have been worse for Burlington Northern: the EEOC suit was filed only days from researchers' announcement of a draft map of the human genome, so the potential use and misuse of genetic information was a hot topic. The first reporters to interview the Avarys told them up front: "It's going to get crazy."

With all the unwanted attention it received, did the railroad shift its attitude? "No," Janice says flatly. "They were basically embarrassed because they got caught. And that was my feeling all the way around. They were very embarrassed because they got caught."

After the suit was filed, Burlington Northern spokesman Richard Russack insisted that the company had "good intentions" and said, "I don't think there's anything wrong with a company trying to do something for the benefit of its employees."

He did admit, though, that "it could have been handled better."

"They were so candid, and the people they got the genetic information from had no idea it was even going on," Janice says. But she also says that attitude was not surprising. "If you look at the history of the railroad, the employees have always been disposable. So that was not surprising, that they'd have the arrogance to talk about it that way. Not at all."

It's the same reason, Gary says, that the railroad adopted the hydraulic tools that led to the same carpal tunnel surgeries it was trying to avoid paying for. "The railroad knew the kind of injuries they were going to get into when they started going to hydraulic tools instead of manual. They were looking at production versus what it would do to employees."

As part of Burlington Northern's settlement with the EEOC, the company would not have to admit guilt for secretly testing its employees. However, the settlement also required the company to send an apology letter to all of its employees, Gary says. "Now how do you do that without admitting guilt?"

Advocacy

The Avarys became involved in the push for genetic nondiscrimination legislation, flying to New York and Washington, D.C., meeting with legislators, testifying before Congress, and raising awareness so that their situation would not be repeated. They found out that it already had.

"We got a lot of calls from the East Coast, from the West Coast - people who did not want to tell their name, but wanted to tell us what happened - because they had actually applied for jobs and that was part of the pre-employment examination," Janice says.

"A lot of people wouldn't come forward," Gary says, "because they didn't want to get fired."

Even with GINA's passage, the Avarys note that fear of repercussions may deter individuals from reporting cases of illegal genetic testing and discrimination, especially in difficult economic times.

"You have a right to ask why," Janice says. "People need to know that one phone call to the EEOC would put the flags up, and that company would be immediately investigated. If someone were to call there today and say, 'I was applying for a job and part of the requirement to get hired was genetic testing,' you can bet in a New York minute that the EEOC would be all over them."

"What most people, even today, do not do is ask questions.  Why are you drawing the blood? What blood tests are you doing, and what are they for? Ask them explicitly: 'I need to know exactly what this blood test is for.' And ask for the entire list. You never know what might show up in there."

Life goes on

The Avarys couldn't have imagined where their cause would take them, Janice says.

"We're in the middle of Nebraska, so it was this whirlwind thing for us, very exciting, flying back and forth to Washington, testifying before Congress, to think that we might actually assist in getting that law put into place."

The plane trips stopped early in the Bush presidency, but the Avarys stayed in the loop. They celebrated GINA's passage, but maintain a cautious view of its impact; after all, Gary says, "Laws are broken every day."

When the excitement died down, Gary and Janice spent some time on the road, seeing the country in their RV. Gary doesn't work for the railroad anymore. Burlington Northern didn't try to fire him again, but they changed his position to one that involved a good deal of traveling - knowing, Gary suspects, that he would quit rather than spend that much time away from his family.

After all they've been through, though, the Avarys don't waste time being bitter. Gary is working at a railroad museum, and he and Janice are still in the middle of Nebraska, about two hours west of Lincoln, "enjoying the simple things: unobstructed sunrises, grandchildren, and the daily miracles that God provides."

 

Sam Anderson is the editor of GeneWatch.

 
 
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