Derailing Genetic Testing at BNSF
On Monday, February 12, the Burlington Northern Santa Fe railroad agreed to halt its coercive employee genetic testing program -- conceding to unprecedented lawsuits filed by the BMWE and the Equal Employment Opportunity Commission by agreeing to a joint temporary restraining order of Federal Judge Mark C. Bennett in the Western District of Iowa. The lawsuits were filed 10 days after BNSF verbally declined the written request of the six BMWE general chairmen representing maintenance of way employees on BNSF to stop the testing.
Harry Zanville, lead counsel for the BMWE, said that BNSF agreed to entry of a sixty day order compelling it to stop doing all genetic tests of its employees, to refrain from use of any tests previously taken, to guarantee the privacy of those people already tested, and to not subject to discharge or discipline those employees who refused to be gene tested. Zanville said that this order should "be a real relief for those who believe individuals still have some rights of privacy in the United States."
BMWE Member's Wife Asks Questions
"If it weren't for the protective instincts of a railroad laborer's wife," reported the Los Angeles Times, BNSF "might still be running a genetic testing program on unwitting workers." 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."
And the EEOC credits the 47-year-old Nebraska nurse with making a discovery that could lead to the first court test of the agency's six-year-old position that the Americans With Disabilities Act protects workers from discrimination.
The story 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 BNSF's 33,500-mile system.
The 46-year-old BMWE member told the Times he spent several hours a day tying new track together with bolts he tightened by squeezing the trigger of an impact wrench, also known as a "rattle wrench," a reference to the powerful vibration of its torque. "I was just beating the crap out of my hands," Avary said.
"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."
When the tips of Avary's fingers began to go numb and he fumbled trying to attach valves to track-laying equipment, he went to a doctor who diagnosed work related carpal tunnel syndrome and recommended surgery to relieve pressure on the nerves. The railroad approved the Sept. 28 operation on his right wrist and hand and following three weeks off, Avary went back to work without restrictions.
After working for almost two months without problems with his hands or wrists, on Dec. 7, Avary received a letter from the railroad instructing him to see a doctor in Lincoln, Nebraska, 200 miles from his home in Alma near the Kansas state line, for "additional, objective medical information to determine whether or not your condition is work-related." The letter said the evaluation "will include laboratory testing and may include x-rays and a nerve conduction test."
The letter did not mention a blood test, but Janice Avary assumed that's what "laboratory testing" meant and she wondered why her husband wasn't instructed to fast, as she routinely reminded patients to do to ensure accurate results. Avary knew that another railroad worker and friend, David Escher of McCook, Nebraska, had also suffered work related carpal tunnel syndrome and had undergone surgery. Escher told the Avarys he had also been instructed to go to the same Lincoln doctor (not his own doctor or a hand specialist) and while there, seven vials of blood were drawn, quite a bit more than was necessary for the tests Janice was familiar with.
On Jan. 3, two days before the scheduled exam, Gary Avary went to work and Janice began making calls. She started by calling BNSF's Nebraska nurse case manager, who had set up the exam for BNSF. "I simply requested a list of the lab tests that were to be done and she never volunteered to send them to me. When I asked ‘what are they looking for?' she named a couple of everyday lab tests and possible genetic tests. And that was the trigger right there."
When Janice commented that the tests could not be done without her husband's permission, the woman referred her to BNSF headquarters, where she was told if her husband refused the exam, he could face an investigation for insubordination and termination.
With those threats in mind, Mrs. Avary picked up the phone and called Russell Ingebritson, BMWE designated attorney from Minneapolis, Minnesota. After Janice related her concerns to him, Ingrebritson told her that the railroad's conduct was unlawful, but that her husband ran the risk of an investigation anyway.
Later that same morning, the Avarys received a telephone call from BNSF Chief Medical Officer, Dr. Jarrard, who reiterated that the test was mandatory under BNSF Safety Rule 26.3.
Janice pressed Dr. Jarrard for answers to her question regarding the reasons and nature of the blood and genetic tests. Despite the fact that Avary's treating doctors had diagnosed work related carpal tunnel syndrome and despite the fact that the railroad had accepted responsibility for the expenses associated with his surgery, Dr. Jarrard told Janice that the railroad needed further tests to determine whether Gary's carpal tunnel syndrome was "work related." Jarrard also insisted that BNSF would continue its system wide tests and stated he did not feel that work could have caused Avary's carpal tunnel syndrome.
In the meantime, Ingebritson contacted BMWE Vice President Ernie Torske and BMWE General Chairman David Joynt, who helped advise the Avarys as well as have the BMWE contact Harry Zanville to get him involved in the case.
After long consideration, the Avarys decided that Gary would not attend the medical examination, feeling that the genetic tests were unlawful, coerced, done without their voluntary and informed consent, and that the tests were a violation of their medical and genetic privacy.
"If they think the track people are naive out here, they should think again," Avary said.
January 5, the day of Avary's ordered examination, Gary spent the day at work. Shortly after he returned home, the telephone rang. It was Dr. Jarrard again. Jarrard asked Avary if he was aware of what would happen to him if he didn't keep his appointment. Gary asked Jarrard if he was trying to intimidate him. Jarrard denied that he was. After Avary told Jarrard he could talk to Ingebritson, Jarrard said that he had heard enough and hung up.
Within days, Avary was informed by his Roadmaster that investigation proceedings were being initiated against him and later confirmed that Dr. Jarrard and others were "really pushing" the investigation to have him fired.
A few weeks later, the Avarys, parents of three daughters and doting grandparents of a grandson, took their first airplane trip to visit Ingebritson about the case. While there, the Avarys and the Eschers were interviewed by the EEOC, following which formal EEOC complaints were filed with Ingebritson's assistance.
Case Wins Strong Media Attention
Also while in Minneapolis, the Avarys and Eschers got their first taste of what was to become a huge media interest in the case, when they were interviewed for an ABC News Focus Five Report.
The media had eagerly taken up the story of the small town wife of a track laborer, who armed only with a nursing degree, personal integrity and courage, had stood up and helped expose the railroad's covert plans to genetically test employees without their knowledge or consent.
"Believe it or not," Ingebritson said, "David can still slay Goliath. All it takes is to be right, to be honest to yourself and your values, and to have courage."
The BMWE and the EEOC were still investigating when Gary Avary got a letter from the BNSF to report to his roadmaster's office "for the purpose of ascertaining the facts and determining your responsibility, if any, in connection with the alleged failure to comply with" the examination letter. That prompted the BMWE and EEOC to move even more quickly to file the lawsuits, despite the claim by BNSF spokesman Richard Russack that while Gary Avary "was scheduled to have an investigation, which I've referred to as a meeting, he was not scheduled for a disciplinary hearing."
Upon hearing Russack's comments about "just a meeting," Ingebritson said, "what does he think this investigation was, a tea party? Any effort to dismiss or minimize obvious written and verbal threats of termination are transparent. The reality is that had Avary quietly capitulated to these threats, we may never have discovered the company's illegal testing program."
On February 9, 10 days after BNSF declined the BMWE's demand to stop genetic testing, the BMWE filed the lawsuit against BNSF and Athena Diagnostics seeking "to remedy the illegal, compulsory regime of genetic testing of injured employees." The BMWE brought charges on behalf of all its members because other members have allowed blood samples to be taken, but did not know the samples would be used for genetic testing.
In a concurrent action on the same day, the EEOC filed its first action
challenging genetic testing by an employer. "Individuals, without their
knowledge or consent, were being subjected to genetic testing that was not
job-related, not necessary," said Ida Castro, EEOC Chairwoman. We must
"protect workers confronted with such an egregious violation of the
In the meantime, the national and even international media embraced the plight of the Avarys and the Eschers. The lawsuits filed by the BMWE and EEOC received attention in virtually every national newspaper in the country, along with the national television news programs. The entire country took interest in the government's first case against a corporation involving the misuse of genetic screening tests in the workplace.
As this JOURNAL was going to press, the Avarys and Eschers along with Ingebritson, had just completed interviews with Mike Wallace of CBS News, 60 Minutes (scheduled to be aired this month). And they were about to do interviews with the well-respected McNeil-Leherer News Hour on PBS.
They have also been contacted by Diane Sawyer and Charlie Gibson of Good Morning America. People magazine has also expressed interest in featuring this story in an upcoming issue.
The media attention has helped uncover even more victims of the railroad's secret genetic testing program. BMWE BNSF General Chairmen Joynt, Bruce Glover and Mark Hemphill spread the word across their systems looking for other employees who may have been subjected to laboratory and genetic tests without their knowledge or consent.
As this goes to print, over 12 cases of secret testing have been uncovered. The individuals involved are filing formal complaints with the EEOC and are also cooperating with the BMWE and the EEOC in their pending lawsuits.
Facing such widespread negative publicity and numerous lawsuits, the railroad soon embarked upon efforts to offer money to affected employees in exchange for "promises not to sue." But even here, according to Ingebritson, the railroad was unfair.
Several of the tested employees have been called into claims offices and told about the company's desire to "make it right." After warm conversation and friendly gestures, the employees were offered "the amount that everyone was getting ... all the company had authorized ... $10,000."
At the same time, another victim in Seattle, after the same warm and friendly talk, was told, "I'm going to treat you right, the same way that everyone else is being treated and I'm going to offer you all I have ... $5,000."
Experts Worried and Upset About How Tests Could Be Used
"If they had just bothered to call me, I could have saved them a lot of money and a lawsuit they richly deserve," said Dr. Phillip Chance, the chief of developmental genetics at Children's Hospital and Regional Medical Center and professor of pediatrics and neurology at the University of Washington in Seattle.
In 1993, Chance discovered a genetic marker for a moderately rare neuromuscular disorder known as hereditary neuropathy with liability to pressure palsies or HNPP.
The disorder can manifest itself in periodic bouts of arm and leg palsies, including but not limited to, carpal tunnel syndrome. Chance and other geneticists said a test for the marker would be of little to no value in screening workers for carpal tunnel injuries.
Chance was horrified, reported the Times, to learn that the test was being used in such a way, and said it could discourage people from participating in research out of fears about how the results would be used.
"A lot of us hope this work could be a prelude to a treatment that might prevent the onset or diminish the progression of illness. The idea is to work to help people," Chance said. "So what the railroad company has done is really a perversion."
The implications of the case go beyond the courts, said Dr. Paul Billings, co-founder of Genesage, a San Francisco-based company developing practical applications of genetics.
Other than the case of Lawrence Berkeley Laboratory (which 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), "this is the largest case I'm aware of where the genetic information was being used in a potentially negative way," Billings said. "Those are the things that, if repeated in other settings, will bring to a grinding halt the marketplace for genetic testing."
Many other experts are also worried that information from genetic research could be used to discriminate in hiring, promotions and insurance. Employers and insurers could save money if they could use predictive genetics to identify in advance, and then reject, workers or policy applicants who are predisposed to develop chronic disease.
Fear of such discrimination is already affecting how people view the medical revolution promised by mapping the human genome, reported the Detroit Free Press and hundreds of other newspapers across the country on February 12 as they heralded the "new era in biology and medicine" that arrived when two rival teams of scientists presented that day their first interpretations of the human genome, the complex set of minuscule instructions that specify a person. These initial findings on how humans are built — the first since the breaking of the genetic code was announced in June 2000 — were published later that week in two scientific journals.
A Time/CNN poll taken last summer found that 75 percent of those polled did not want insurance companies to know their genetic code and 84 percent wanted that information withheld from the government.
Legislators Taking Action
Concern that genetic tests could be used to weed out workers based on their genetic predispositions to injury or disease has led 22 states to ban the use of genetic screening for making employment-related decisions.
In Congress, Senators Tom Daschle (D-SD) and Edward Kennedy (D-MA) and Rep. Louise Slaughter (D-NY) renewed an effort to outlaw the use of genetic information against people in the workplace or in obtaining health insurance. 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," Kennedy said when he reintroduced the Genetic Nondiscrimination in Health Insurance and Employment Act the week of February 19. "And the testing was being conducted by one of the largest railroads in the country."
Slaughter, who introduced the genetic discrimination ban in the House, said what happened at Burlington Northern could reinforce widespread reluctance among Americans to get medically indicated genetic tests out of fear the results could be used against them. "The Burlington Northern case is really indicative of what we're trying to stop," she said. "We're afraid without legislation that more of that will happen."
Writing in Science the week of February 12, Daschle and Senator James Jeffords (R-VT) said that "without adequate safeguards, the genetic revolution could mean one step forward for science and two steps backward for civil rights. Misuse of genetic information could create a new underclass — the genetically less fortunate."
Jeffords supports the legislation introduced by Senators Bill Frist (R-TN), the only physician in the Senate, and Olympia Snowe (R-ME), which would prevent insurance companies from requiring genetic testing and ban the use of genetic information to deny coverage or set rates.
Daschle supports the broader measure and favors laws that would conform to the Universal Declaration of the Human Genome and Human Rights by UNESCO (United Nations Education, Scientific and Cultural Organization): "No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity."
FRA to Investigate Why No Carpal Tunnel Cases Reported
On Feb. 20, the Federal Railroad Railroad Administration announced that it would launch an investigation into why the nation's second-largest railroad reported no cases of carpal tunnel syndrome among workers last year yet told reporters during the media flurry following the lawsuits being filed that 125 workers had filed reports since last March reporting their jobs had caused carpal tunnel injuries.
FRA Associate Administrator George Gavalla told the Omaha World-Herald he ordered the review after he heard BNSF spokesman Russack's statement that 125 workers had filed claims of job-related carpal tunnel syndrome since last March. Russack's disclosure was part of the railroad's explanation for obtaining genetic testing in the "pilot program" started last March.
Gavalla explained that it's not uncommon for railroads to slightly under-report either because there's a misunderstanding or because the information isn't forwarded to the right person, the Herald said. But "we were surprised. One hundred twenty-five is not routine. Usually you're finding one or two ... that's why it perked our attention."
Russack said, "the rules state that you only need to file work-related carpal tunnel syndrome injuries. So if we didn't file any, it's because they weren't work-related."
According to FRA data, the number of carpal tunnel injuries in the railroad industry has steadily declined over the past eight years. In 1992, there were 225 cases, in 1996, 34 cases, and in 2000, there were just 11. That's a 95 percent drop over the eight years.
"My perspective, as a union officer," BMWE General Chairman Joynt told the Herald, "is the railroad has an aggressive campaign to intimidate employees into not reporting injuries discipline-wise. And it spreads (to other employees)."
Federal regulations require railroads to report workplace injuries or face fines of as much as $5,000 per day per case for deliberately underreporting injuries.
"We're going to look at the BNSF first, and we'll probably take a look at the others," Gavalla said.
BMWE attorney Zanville told the Herald that the discrepancy in BNSF's carpal tunnel syndrome reporting (so far the BMWE has found over 12 cases in which a doctor diagnosed carpal tunnel and deemed it work related) reflects a pattern among railroads of minimizing the number of on- the-job injuries. "It's way beyond carpal tunnel," Zanville said.
"There have been multiple studies that say it is this kind of disorder that gets significantly underreported by industry," said Dr. Rosenstock. "We like incentives to work safer and smarter," she said, "but a real concern has been raised in the occupational safety and health community that the incentives are not changing the actual work pattern or the risk for injury but merely just increasing incentives not to report the injury that actually occurred."
In addition to the Avarys, other involved BMWE members and officers, the attorneys, and the EEOC, BMWE President Mac A. Fleming publicly thanked Dr. Wylie Burke of the University of Washington, Dr. Tony Holtzman of Johns Hopkins, the University of Minnesota Center for Bioethics and Dr. Billings, some of the leaders in the field of genetics, for stepping forward to help prove that this use of genetic information was misleading, unethical and needed to be stopped. And, he added, "Harry Zanville, our lead attorney, did a fantastic job. His efforts will benefit not just BMWE members, but all workers."
Bigger Than Genetic Testing?
Genetic testing aside, many inside and outside the BMWE believe this case illustrates the need to challenge rules which railroads utilize to force employees to submit to company sponsored medical tests and examinations.
Ingebritson pointed out that in addition to genetic testing, BNSF was also conducting other undisclosed laboratory tests searching for medical conditions as far-ranging as hypothyroidism, hyperthyroidism, diabetes mellitus, gout, hypercalcemia, amyloidosis, rheumatoid arthritis, osteoarthritis, and many more, even "investigating life style issues relating to workers, such as obesity, alcohol use and even pregnancy."
All of this medical testing ordered by BNSF was done pursuant to BNSF Safety Rule 26.3, which states:
"The Medical Department will determine when medical examinations are necessary, the content of such examinations, and requirements for participation as the needs arise. Employees subject to these examinations must follow any and all requirements as issued."
This rule was never negotiated or agreed to by any union. It was written and asserted by the railroad alone and was promulgated as a "Safety Rule" which reinforced its mandatory tone.
The problem with this and similar rules, is that it implies that the railroad has unlimited, absolute legal authority to order any medical examinations it chooses, whether they are reasonable, relevant or otherwise permissible under the law.
While the American with Disabilities Act does permit employers to request medical exams under limited circumstances, it also protects the medical interests of the employee and ensures that medical exams are business related and focused upon an employee's ability to do his job and nothing else.
Concerns over these and similar issues recently prompted the BMWE's Northwestern and Western Regional Associations to form a Joint Committee to study and recommend solutions to these problems. Under the leadership of BMWE Vice Presidents Torske and Rick Wehrli, this new committee has met several times and has appointed BMWE Vice General Chairmen Butch Hohbein from the Burlington Northern System Federation and Tony Wheeler from the Atchison, Topeka & Santa Fe System Federation, to serve as regional liaisons to the Joint Committee.
Readers with ideas or suggestions regarding the committee's work should contact any of these four officers who will ensure that they will be discussed within the Committee.