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EEOC Takes Railroad to Court over Genetic Tests

February 10, 2001

WASHINGTON (Reuters)-The U.S. Equal Employment Opportunity Commission has gone to court for the first time to stop a company from testing its employees for genetic defects, setting up an unprecedented legal battle over medical privacy in the work place, the Washington Post reported on Saturday.

The Post said the Commission filed a petition in federal court in Sioux City, Iowa, Friday asking that Burlington Northern Santa Fe Railroad be ordered to halt genetic tests on blood taken from employees who have filed claims for work-related injuries based on carpal tunnel syndrome.

Burlington Northern spokesman, Richard Russack, told the post the company is considering telling the court that it will stop the testing for 60 days "to evaluate the situation.

As a result of the EEOC Lawsuit, the railroad has become one the first companies to acknowledge having used genetic testing on its employees, according to the EEOC's lawyers cited by the Post.

Concern that such 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, according to the Post.

The EEOC argues that basing employment decisions on the results of genetic tests, such as those used by the railroad, violates the Americans With Disabilities Act.

Russack, the railroad's vice president of communications, said the railroad had not required workers to submit to genetic testing, but the post said he acknowledged that "there may have been instances" when employees were asked to do so. The railroad has more than 40,000 employees.

The EEOC alleges that the railroad requires workers who have submitted claims of work-related carpal tunnel syndrome to provide blood samples, which are then used for a genetic test, the Post reported.

The report said the test seeks to identify a genetic defect that some experts believe can predispose a person to some forms of carpal tunnel syndrome, a musculoskeletal disorder that causes pain and numbness in the hand or wrist. The condition is thought by most physicians to be caused by repetitive motion.

The Post noted that the EEOC's action came just three days before scientists are scheduled to announce the results of their first comprehensive analysis of the full human genetic code, work that is expected to quickly lead to the discovery of new disease genes and development of new predictive genetic tests.

http://dailynews.yahoo.com/h/nm/20010210/sc/health_genetics_dc_1.html



BN Sorry about DNA Testing to Bar Carpal Tunnel Cases

Railroad News By Pamela O'Dwyer, Chattanooga, Tennessee

In Addition to failing to report any carpal tunnel cases to the FRA for the year 2000, in spite of the fact that it now acknowledges that it had 125 employees who filed such claims; Burlington Northern has apologized to its employees for subjecting them to DNA testing to eliminate claims that the condition was work-related.

Matthew Rose, CEO of Burlington Northern, told company employees the test was not designed to discriminate against persons in hiring or promotion decisions. He claims the test was a component of a diagnostic medical exam by the company medical officer used to determine if the individual claims of carpal tunnel were work- related, or more likely attributable to factors such as obesity, diabetes, or a genetic disorder.

Rose indicated Burlington Northern did not intend to be secretive when it introduced this new diagnostic method. He simply chalked it up to not communicating to the employees about what the railroad was doing or why.

After suit was threatened by the EEOC, Burlington Northern signed an agreed order to cease the testing and it has announced that no employee will be or have been disciplined for refusing the test.

Union Pacific claims it has never paid an engineer for a carpal tunnel injury. Does anyone have information to refute such a claim?

EEOC Sues To End Genetic Testing

By Greg Toppo, Associated Press Writer

February 9, 2001

WASHINGTON (AP)-In the first federal case of its kind, the government sued Burlington Northern Santa Fe Railroad on Friday for requiring genetic testing of employees who file claims for certain work related hand injuries. The policy violates workers' civil rights, the lawsuit said.

The U.S. Equal Opportunity Commission asked that the railroad end the testing of workers who make claims for carpal tunnel syndrome. The lawsuit said the employees were not asked to consent to the tests and at least one worker who refused to provide a blood sample was threatened with losing his job.

It is the first time the commission has challenged such tests, which it said violate the Americans With Disabilities Act, chairwoman Ida L. Castro said.

"As science and technology advance, we must be vigilant and ensure that these new developments are not used in a manner that violates workers' rights," Castro said in a statement.

The railroad tested the samples for Chromosome 17 deletion, the commission said. Some studies have suggested that would predispose a person for some forms of carpal tunnel syndrome.

The condition and related injuries caused by repetitive hand motions are the leading workplace occupational hazard, according to the National Academy of Sciences.

Dick Russack, spokesman for the railroad, said the company does ask employees who file disability claims for the condition to undergo genetic testing, which he said could show that the injury was not work-related. But he denied that anyone had been disciplined or threatened for refusing.

"If somebody doesn't want to take the test, fine. There is no disciplinary action for refusing," he said.

The company began the testing program last year on advice of its medical department, Russack said. About 20 people, less than 10 percent of those claiming the disability, have been tested, he said.

The company was caught by surprise by the lawsuit, he said. "They usually ask for a meeting or mediation."


The lawsuit, filed in federal court in Sioux City, Iowa, asks that the Texas-based railroad end its nationwide policy of requiring employees who have submitted claims for work-related carpal tunnel syndrome to provide blood samples.

The commission said the blood tests violate workers' "most intimate privacy rights' and are "and invasion of privacy and a person's bodily integrity."

"A person who has been forced to give blood will never be made whole, and genetic information that is revealed can never be concealed," the lawsuit said.

Basing employment decisions on DNA testing violates the Americans With Disabilities Act, in part because the exam is not job-related or "consistent with business necessity," said commissioner Paul Steven Miller.

"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," Miller said in a statement.

Four unionized workers-three from Nebraska and one from North Dakota-charged the railroad with discrimination, also alleging that the railroad required them to submit lists of all family members who had been diagnosed with carpal tunnel syndrome. Complaints were also filed on behalf of members of the Brotherhood of Maintenance of the Way in Nebraska and Minnesota.

Burlington Northern Santa Fe operates on e of the largest rail networks in North America. It stretches 33,500 miles and covers 28 states and two Canadian provinces.

The Occupational Safety and Health Administration says that each year 1.8 million workers have musculoskeletal injuries related to working conditions. OSHA says 600,000 people miss work because of them.

http://dailynews.yahoo.com/h/ap/20010209/pl/genetic_tests_3.html

 


EEOC Sues to Halt Worker Gene Tests

February 10, 2001

By Sarah Schafer Washington Post Staff Writer

The U.S. Equal Employment Opportunity Commission yesterday went to court for the first time to stop a company from testing its employees for genetic defects, setting up an unprecedented legal battle over medical privacy in the workplace.

In a petition filed in U.S. District Court in Sioux City, Iowa, the commission asked that Burlington Northern Santa Fe Railroad be ordered to halt such tests on blood taken from employees who have filed claims for work-related injuries based on carpal tunnel syndrome.

The railroad in response, is considering telling the court that it will stop the testing in 60 days, said Richard Russack, a Burlington Northern spokesman. He said the company will use that time to "evaluate the situation."

The debate over biological screening in the workplace has intensified as scientists unravel the human genetic code, but the controversy has largely been theoretical so far. As a result of the EEOC lawsuit, the railroad has become one of the first companies to acknowledge having used genetic testing on its employees, according to the EEOC's lawyers. Concern that such tests could be used to weed out workers based on their genetic predispositions to injury or disease has led 22 states, including Iowa to ban the use of genetic screening for making employment-related decisions.

The EEOC argues that basing employmemt decisions on the results of genetic tests, such as those used by the railroad, violates the Americans With Disabilities Act.

"As science and technology advance, we must be vigilant and ensure that these new developments are not used in a manner that violates workers' rights, "EEOC Chairwoman Ida L. Castro said in a statement.

The case began when a 45-year-old track maintenance worker from Nebraska applied for compensation for developing what he said was carpal tunnel syndrome. When he refused to allow a physician to do a blood test, the company told him he would be fired, according to EEOC lawyers.

Russack, the railroad's vice president of communications, said the railroad had not required workers to submit to genetic testing, but he acknowledged that "there may have been instances" when employees were asked to do so. The railroad has more than 40,000 employees.

The EEOC's action came just three days before scientists are scheduled to announce the results of their first comprehensive analysis of the full human genetic code, work that is expected to quickly lead to the discovery of new disease genes and development of new predictive genetic tests.

Although hundreds of genetic tests have been available for medical and research purposes for years, it's unclear how prevalent genetic testing is in the workplace. However, there has been increasing concern that employers or insurance companies could use tests to discriminate in situations such as hiring or providing health-care coverage.

A year ago, President Bill Clinton signed an executive order prohibiting federal departments and agencies from making employment decisions based on protected genetic information. And next week, Sen. Thomas A. Daschle (D-S.D.), Sen. Edward M. Kennedy (D-Mass.) and Rep. Louise M. Slaughter (D-N.Y.) plan to introduce legislation to prohibit the use of genetic information as a basis for discrimination in employment and health insurance coverage.

Neither Virginia, Maryland nor the District has enacted a law on genetic testing. But in December, Montgomery County--Home to most of the Washington area's biotech industry--became the first local jurisdiction in the nation to pass a bill forbidding job discrimination based on a person's genetic code.

The EEOC alleges that the railroad requires workers who have submitted claims of work-related carpal tunnel syndrome to provide blood samples, which are then used for a genetic test. The test seeks to identify a genetic defect that some experts believe can predispose a person to some forms of carpal tunnel syndrome, a musculoskeletal disorder that causes pain and numbness in the hand or wrist. The condition is thought by most physicians to be caused by repetitive motion.

The EEOC also alleges that employees were not informed of the genetic test or asked to give their consent. The agency also alleges that the company threatened to fire a worker who refused to provide a sample because he suspected it would be used for such a test.

Russack declined to comment on allegations regarding consent and retaliation.

Separately, the Brotherhood of Maintenance Way Employees, which represents the railroad workers, has filed suit against Burlington Northern and Athena Diagnostics Inc., one of the companies that tested the workers' blood. The union asked the same court to prohibit Athena from testing blood without the workers' consent.


Max Gershenoff, an Athena spokesman, said he had not seen a copy of the complaint and would not comment on pending litigation, but he said "it is Athena Diagnostics Policy to only accept samples from physicians."

The union said that the railroad collected samples from 125 employees and that 18 of those samples had been subjected to genetic tests.

Gary Avary, the Nebraska employee who said he was threatened with dismissal, required surgery as a result of carpal tunnel syndrome, the EEOC said. After submitting a claim to the railroad for compensation, Avary submitted medical information to the company as proof of his injury, according to the EEOC. Burlington Northern then sent him a letter, a copy of which was seen by The Washington Post, saying he would have to be examined by another doctor so the railroad could obtain "objective" information.

Avary contacted the second physician, who told him he would be required to submit a blood sample, according to the EEOC. Avary's wife, Janice, said in an interview that she asked the doctor's office about this blood test and learned from a doctor that her husband's blood would be submitted for genetic testing.

Many scientists have questioned the validity of such tests to determine a person's risk for developing carpal tunnel syndrome.

"It's hard for me to imagine why the company would want to do the test," said Wylie Burke, head of the department of medical history and ethics at the University of Washington in Seattle. She said the condition the tests detects is rare, affecting only two to five people out of every 10,000.

Russack said that the railroad began genetic testing on the advise of its medical department and that he did not know why the department recommended it.

http://www.washingtonpost.com/wp-dyn/articles/A50520-2001Feb9.html


EEOC Takes Railroad to Court over Genetic Tests

February 10, 2001

WASHINGTON (Reuters)-The U.S. Equal Employment Opportunity Commission has gone to court for the first time to stop a company from testing its employees for genetic defects, setting up an unprecedented legal battle over medical privacy in the work place, the Washington Post reported on Saturday.

The Post said the Commission filed a petition in federal court in Sioux City, Iowa, Friday asking that Burlington Northern Santa Fe Railroad be ordered to halt genetic tests on blood taken from employees who have filed claims for work-related injuries based on carpal tunnel syndrome.

Burlington Northern spokesman, Richard Russack, told the post the company is considering telling the court that it will stop the testing for 60 days "to evaluate the situation.

As a result of the EEOC Lawsuit, the railroad has become one the first companies to acknowledge having used genetic testing on its employees, according to the EEOC's lawyers cited by the Post.

Concern that such 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, according to the Post.

The EEOC argues that basing employment decisions on the results of genetic tests, such as those used by the railroad, violates the Americans With Disabilities Act.

Russack, the railroad's vice president of communications, said the railroad had not required workers to submit to genetic testing, but the post said he acknowledged that "there may have been instances" when employees were asked to do so. The railroad has more than 40,000 employees.

The EEOC alleges that the railroad requires workers who have submitted claims of work-related carpal tunnel syndrome to provide blood samples, which are then used for a genetic test, the Post reported.

The report said the test seeks to identify a genetic defect that some experts believe can predispose a person to some forms of carpal tunnel syndrome, a musculoskeletal disorder that causes pain and numbness in the hand or wrist. The condition is thought by most physicians to be caused by repetitive motion.


The Post noted that the EEOC's action came just three days before scientists are scheduled to announce the results of their first comprehensive analysis of the full human genetic code, work that is expected to quickly lead to the discovery of new disease genes and development of new predictive genetic tests.

http://dailynews.yahoo.com/h/nm/20010210/sc/health_genetics_dc_1.html



Genetic test results none of a business' business

Railway company halts employee genetic testing after court action filed last Friday
By Lisa Schencker The Daily Illini

February 16, 2001

The Burlington Northern Santa Fe Railway Company announced Monday that it is putting a halt to genetic testing of employees after a court action was filed by the U.S. Equal Employment Opportunity Commission Feb. 9.

The commission filed the action claiming that the railway company's testing of certain employees was in violation of the Americans with Disabilities Act.

"By its very nature, genetic testing tries to predict the future possible risk," Laurie A Vasichek, senior trial attorney for the commission, said. "The (act) asks employers to evaluate employees for what they will be able to do today."

Headquartered in Fort Worth, Texas, the railway company operates one of the largest railroad networks in North America. Of the company's 40,000 person work force, 125 employees have filed claims for carpal tunnel syndrome since March. Of the 125 workers, 20 were chosen to undergo genetic testing to determine whether the syndrome was work-related or due to genetic predisposition.

The 20 employees were asked to be tested because their claims of carpal tunnel syndrome weren't adequately substantiated, said Richard Russack, the railway's vice president of corporate relations.

According to the commission, the workers weren't asked to submit to testing at all-they were forced against their knowledge and then threatened with disciplinary action if they refused.

"A preliminary investigation shows that employees were told that their blood would be laboratory tested," Vasichek said. "They were not told that the blood was being taken for genetic testing."

Only after being pressed did the company admit that workers' blood was to be genetically tested, Russell Ingebritson, attorney for individual employees involved in the case, said.

One of Ingebritson's clients, Gary Avery, was told that the "testing was mandatory, that he had no choice, and that he must comply or would be fired," Ingebritson said.



"Avery wouldn't submit to the genetic test. On Jan. 12, Avery was told by the company to arrange to attend an investigation to determine why he wouldn't allow himself to be tested," Ingebritson said. "In the railway industry, this is a set up to fire somebody."

Russack maintains that the testing was completely voluntary and that physicians were supposed to inform workers of exactly what was being done.

"Physicians who conducted the tests were to explain to employers what the tests were for," Russack said. "But I wasn't present. I don't know exactly what the physicians told employees."

Letters sent by the company to the employees in question said nothing of genetic testing while letters sent to doctors conducting the tests explicitly stated the purpose of the examinations, Ingebritson said.

"There is nothing in the letter that indicates to the doctor that it is the doctor's responsibility to tell the employees anything the railroad was planning on doing,"Ingebritson said of a letter sent to David Escher, another worker who was to be tested. "And I don't believe that every one of the doctors could have failed to follow the instructions they were given."

According to the commission, this is the first time a court action has ever been filed challenging genetic testing of workers. As the practice of genetic testing becomes more common, and especially with the recent completion of the human genome project, lawyers expect the prevalence of such cases to increase.

"I'm surprised that it has taken this long for such a case to appear. It raises difficult issues that the courts will have to work through," University law professor Carlos Ball said. "I think the courts are going to be dealing with issues not only under the disabilities act, but with issues concerning privacy of medical records as well."

His privacy is exactly what Avery was trying to preserve, Ingebritson said.

"Frankly, it's none of Mr. Russack's business what Mr. Escher's or Mr. Avery's genetic code says,"Ingebritson said.

Ball agreed that the railway company might have gone too far.

"It seems reasonable for an employer to require examinations for its employers,"Ball said. "But by genetic testing, the railway company was just not focusing on the person's ability to do the job, but also looking into the person's future. Under current laws, now is what should matter, not what might happen in the future."
http://www.dailyillini.com/feb01/feb16/news/news07.shtml



New issue: Genetic testing in the workplace

Sharon Schmickle/Star Tribune

April 16, 2001

Robert Damyanovich didn't ask to be a prime example for the argument that Minnesota needs tougher restrictions on genetic testing at work.

The railroad worker from Nashwauk, Minn., didn't even know until February that Burlington Northern Santa Fe Railroad had tested the DNA of employees like him who blamed wrist problems on their jobs. But Damyanovich favors a bill awaiting action by the Minnesota Legislature.

It would bar employers from requiring workers to undergo such genetic tests.

"The test really was an invasion of my privacy," he said. "It's [an issue of] my family's privacy, too. They have taken my family tree. I don't need the railroad to tell me about what might happen to my kids or to my father and mother."

The bill's supporters say that genetic testing creates a major civil rights issue by opening questions of who should have access to information encoded in a person's cells and whether that information can justify hiring or benefits decisions.

But national groups representing employers and health insurers argue that worries about genetic privacy are overblown because discrimination hasn't been a problem. They oppose a similar bill that is stalled in Congress, arguing that new laws would impose unnecessary and costly burdens on their industries.

The Minnesota Chamber of Commerce is neutral about the basic thrust of the state bill, although it has some concerns about possible penalties, said Tom Hesse, who directs the chamber's labor management policy.

The science of genetic testing is so new that many employers haven't sorted through the implications, Hesse said, and some companies welcome limitations.

The Burlington Northern case has served as Exhibit A in discussions of the Minnesota bill.

For Damyanovich, 49, it started in 1999 when his hands were so numb they "seemed to be dead" at times. It was carpal tunnel syndrome, which he blamed on 27 years of pounding on tracks and handling vibrating equipment.


Damyanovich said that after he filed a claim with Burlington Northern and had surgery on his left hand, he received a certified letter from the railroad's headquarters in Fort Worth, Texas, ordering him to undergo additional medical tests.

At the testing lab in October, he said, "the gal kept pumping the blood out of me--seven vials of blood. ...I told my wife, <Something's wrong. Nobody takes that much blood unless they are up to something.'"

Four months later, he learned what was happening. On Feb.9, the U.S. Equal Employment Opportunity Commission said that Burlington Northern was conducting genetic testing in violation of the Americans with Disabilities Act. The EEOC asked a federal court to put a stop to it.

Burlington Northern Acknowledged that it had collected DNA from employees with carpal tunnel problems as part of an evaluation of injury claims. A study had suggested that genes may be a factor in some carpal tunnel cases. The company voluntarily suspended the program and apologized to employees.

Steven Keil, a Burlington Northern mechanic from Aitkin, Minn., said he didn't know the company had tested his DNA until his family doctor asked to see the findings of Burlington Northern's examination. Keil said it wouldn't be fair to judge his claim that the injury was work-related on the basis of a genetic test.

"We've all got some genetic flaws," he said.

Testing is new

Bioethicist Jeffrey Kahn Stressed that point in hearings on the Minnesota bill. Because DNA testing is in its infancy, just a few conditions can be identified. But eventually tests will show which workers are prone to heart disease, cancer and other problems. It would be discriminatory to single out workers whose conditions happen to be identifiable right now, said Kahn, who directs the Center for Bioethics at the University of Minnesota.

Recently attorneys for Burlington Northern and the EEOC met in Milwaukee to began negotiating a court-supervised termination of the testing program, said Laurie Vasichek, an EEOC attorney in Minneapolis. The EEOC is investigating possible further legal action, she said.

Meanwhile, Burlington Northern agreed in a settlement with two unions on April 5 that genetic screening is subject to negotiations under the Railway Labor Act. The Brotherhood of Maintenance of Way Employees and the International Brotherhood of Locomotive Engineers also had sued the railroad.


The agreement also requires Burlington Northern to "acknowledge the need for national legislation limiting the use of genetic screening in employment decisions" and to lobby for passage of the bill that is before Congress.

Rep. Louise Slaughter, D-N.Y., said she hasn't been able to get hearings on her bill, which would set nationwide limits on employers' use of genetic screening for hiring, firing, promotions and determining benefits. It would also bar health insurers from using genetic information to deny, cancel or change coverage.

Chairmen of key congressional committees have sided with industry leaders who say that existing laws protect workers.

The bill is stalled even though 227 House members and 18 senators co-sponsor it, including Minnesota Democrats--Sen. Paul Wellstone and Reps. Bill Luther, Betty McCollum, Jim Oberstar, Collin Peterson and Martin Sabo.

Meanwhile, states aren't waiting for Congress to act. Twenty-two states, including Wisconsin and Iowa, prohibit discrimination in the workplace based on the results of genetic tests, according to the National Conference of State Legislatures.

Minnesota's move to join that trend was proposed by Rep. Phyllis Kahn, DFL-Minneapolis, and Sen. Ellen Anderson, DFL-St. Paul. Their bills have cleared all of the required committees with little opposition and are in line for final votes.

Under their bills, companies couldn't force workers to take genetic tests. If employees voluntarily submitted to a genetic test, the results couldn't be used for decisions about hiring, firing and promotions or demotions.

Sharon Schmickle is at sschmickle@startribune.com

http://webserv6.startribune.com.../article?thisSlug=TEST16&date=16-Apr-2001&word=kei

Railroad Genetic Discrimination Suit Settled

Russell A. Ingebritson

May 8, 2002

This landmark settlement, which has been filed in Federal Court today, is testament to the perseverance of a remarkable group of dedicated railroad workers that I am privileged to represent.

All Americans can be proud of the highly capable and committed attorneys and staff of the EEOC, who have aggressively helped vindicate the genetic and medical privacy rights of 40,000 BNSF employees. This includes Julie Bretz, Laurie Vasichek, Jean Kamp, Chester Bailey and the Commissioners in Washington, D.C.

Hopefully this achievement today will become an important first step in protecting the same genetic and medical privacy rights for all Americans. If so, this case shall have accomplished its highest and best purpose.

As we have said before, the fight for genetic privacy, medical confidentiality, and the right to be free from forced participation in medical studies without one's knowledge and consent, together with the right to be free from genetic discrimination in the workplace and elsewhere, will continue, in both the Courts and Congress.

 



ABC NEWS
SHOW: GOOD MORNING AMERICA (7:00 AM ET)
APRIL 18, 2001, Wednesday

TYPE: Interview

LENGTH: 1092 Words

HEADLINE: GARY AND JANICE AVARY AND THEIR LAWYER RUSS INGEBRITSON DISCUSS THEIR LAWSUIT AGAINST GARY'S EMPLOYER FOR ITS SECRET GENETIC TESTING OF ITS EMPLOYEES

ANCHORS: DIANE SAWYER; CHARLES GIBSON

BODY:

DIANE SAWYER, co-host:

Well, this could be a landmark decision for everyone in the workplace. And to thank for it, we have a railroad worker and his wife, who's been called a kind of Erin Brockovich. If it weren't for their suspicions, and for the smarts of Janice Avary, the wife of a railroad worker of Gary Avary, the powerful Burlington Northern Railroad might still be running a secret genetic testing program on some of its railroad workers. But because of her interest in the facts and her experience, the Equal Employment Opportunity Commission, the EEOC, brought the first-ever lawsuit of its kind against the railway.

The results could affect the privacy of everyone in the workplace, as we said. and to tell their story, we're joined now by Janice and Gary Avary and their lawyer Russ Ingebritson.

And we thank you all for coming in.

Mr. Avary, let me start with you--a railway company employee for 27 years and you developed carpal tunnel syndrome after working on a couple of derailments--had surgery, even.

Mr. Gary Avary (Secretly Tested Railroad Worker): Right.

SAWYER: Then you got a letter from the company asking you to do what?

Mr. AVARY: Well, they wanted all my medical records. They wanted to more or less see the neurologist that told me I had carpal tunnel syndrome. They didn't believe I had it, and they didn't believe that the workplace caused it. So...

TEXT:


I have determined that a medical examination is necessary and you are required to participate in the examination.
This evaluation will include laboratory testing and may include X-rays and a nerve conduction test...

SAWYER: And they wanted you to go in for the tests?

Mr. AVARY: They wanted me to go in for further testing and evaluation and for a laboratory testing and X-rays and everything I'de been--you know, I'd been through. So, and then...

SAWYER: Strike you as curious?

Mr. AVARY: Yeah, yeah, real curious.

SAWYER: And A colleague of yours tells you that even before he's had any surgery, he's asked to in for some tests as well.

Mr.AVARY: Yeah, I know. This Dave Escher (ph)--he was to go ahead of me. And I asked him, I said, <Dave, could you let me know what--what they do to you when you come back?' and he says,'Yeah, I will, Gary.'He says,'I sure will.' and when he got home, he told me. He said,'They run me through some--a few tests.'And he said,'Then they drew seven vials of blood.'

SAWYER: Seven vials of blood. Enter Janice Avary who is a nurse.

Ms. JANICE AVARY: That--the number itself. Routine laboratory tests generally don't take seven vials of blood unless you're having a, you know, a heart transplant. You know, routine is two to three.

SAWYER: So what did you say to yourself?

Ms. AVARY: What are they looking for? Especially, I guess, what raised suspicions first was the fact that my husband had already had surgery, was fine, back at work. And so we had to call and find out what we were going to see.

SAWYER: You placed this call with a lot of what we call in New York, Moxie, I believe. You placed a call to the director of health for the company.

Ms. AVARY: Right.

SAWYER: And you get a call back and you just tell them you know it's genetic testing they're doing?


Ms. AVARY: Well, he asked me. I said,"YES. You're going to do laboratory tests. You want my husband to go to Lincoln. And I've been told you're going to do a genetic test. He was very surprised that I mentioned a genetic test. He says,'Where did you hear that from?' I said, <From your secretary, and from your medical liaison in Lincoln.'<Oh.' So he was very surprised, I think, that anyone was even questioning what they were doing. And, you know, he just,'Oh, it's just a simple little test, you know, no big deal. We're just going to look for a very rare neuropathy. You know, Mrs. Avary, don't--don't be worried about it.'

SAWYER: But, in fact, they were going to look for genetic predispositions...

Ms. AVARY: Yes.

SAWYER: ...for carpal tunnel...

Ms. AVERY: That's right.

SAWYER: ...which, again, could have made a big difference in terms of hiring practices if they wanted to deploy it.

Ms. AVARY: Oh, absolutely, absolutely.

SAWYER: Mr. Ingebritson, do we know how many people they did test?

Mr. RUSS INGEBRITSON (Avary's Lawyer): The number of people has evo--has evolved over a period of time. I represent about a dozen of these individuals, the average age of whom is about 52 years of age, and some were as old as 57 years of age that--that the company was secretly genetically testing.

SAWYER: As we know, a settlement is now pending to go to the courts and the company has issued a statement saying that this decision to do this testing should have been taken at the highest level, and there's an apology from the head of the company. Is that enough?

TEXT:

While the decision to include the genetic test factor in the battery of diagnostic tests was well intended, it was a decision that should have been made at the highest level of the company and should have been fully disclosed and explained to our employees. This was not done and for that I apologize.

Mr. INGEBRITSON: No. It shouldn't have been taken at any level. And on behalf of the individuals in this case and all individuals in the country, we will continue to seek a full accounting in the courts and in--and seek changes in Congress.

SAWYER: Mr. AVARY, back at the company, what do your fellow workers say to you?

Mr. AVARY: You know, you know,'Do something for us. Help us out. You know, this is wrong. You know, they know it's wrong.'


SAWYER: And, Ms. Avary, I know that you took your first plane ride recently. You haven't really traveled away from home.

Ms. AVARY: Yeah.

SAWYER: What is it like when people say you're Erin Brockovich revisited?

Ms. AVARY: It's--it's stunning but yet, actually it's an honor to be compared to a woman so courageous.

SAWYER: Well, again, we thank you both for coming in.

Ms. AVARY: Thank you.

SAWYER: Mr. Ingebritson, we thank you as well. we'll be following the case. And, as we say, this could be landmark in terms of privacy of genetic information.

Ms. AVARY: Absolutely.

Mr. AVARY: We know it is.

Mr. INGEBRITSON: Thank you, Diane.

SAWYER: Sixteen minutes past now. Charlie:

CHARLES GIBSON, co-host:

All right. Thanks, Diane.

LOAD-DATE: April 19, 2001

 

 

 

 




Suit Seeks end to genetic testing by BN Railroad
By Grace Shim World Herald Staff Writer

February 10, 2001

An Alma, Neb., woman's questioning has led to the first federal lawsuit seeking to stop a company from testing employees for genetic defects.

Janice Avary of Alma discovered that he husband's employer, Burlington Northern Santa Fe Corp., was trying to extract blood for genetic testing without his permission. Avary's husband, Gary, is one of four union workers-three of whom are from Nebraska-taking part in a civil-rights lawsuit filed by the U.S. Equal Opportunity Commission.

In the first federal case of its kind, the government is suing Burlington Northern, seeking to stop the railroad from requiring blood samples for genetic testing from employees who file claims for certain work related hand injuries. The suit says the testing is intended to identify people who may be genetically predisposed to such conditions a carpal tunnel syndrome, which could mean that the repetitive-motion injury was not work-related.

The lawsuit, which was filed Friday in the U.S. District Court in Sioux City, Iowa, said Burlington Northern's policy violates workers' civil rights. A separate also was filed Friday by the union against the railroad.

Burlington Northern began the testing program last year on the advice of its medical department, said Dick Russack, a railroad spokesman. About 20 people, fewer than 10 percent of those claiming the disability, have been tested, he said.

The lawsuit surprised the company, he said.

EEOC Chairwoman Ida Castro said this is the first time that the commission has challenged such tests, which the commission contends violate the Americans With Disabilities Act.

"As science and technology advance, we must be vigilant and ensure that these new developments are not used in a manner that violates workers' rights," Castro said.

The four workers who are part of the suit allege that the railroad required them to submit lists of all family members who had been diagnosed with carpal tunnel syndrome.

Gary Avary, who has worked for Burlington Northern for 27 years as a maintenance worker, noticed numbness in his right fingertips about six months ago, said his wife. After getting the railroads authorization, Gary Avary had carpal tunnel surgery in August.


Janice Avary, a registered nurse, said she became suspicious when the railroad requested blood samples after the successful surgery. She also wondered why her husband was referred to a lincoln-based doctor-not his doctor or a hand specialist-for the blood work.

Avary knew that another railroad worker and friend, David Escher of McCook, Neb., also had undergone carpal tunnel surgery. He was told to go to the same Lincoln doctor, where seven vials of blood were drawn, she said.

"This is just odd,"Avary said she recalled thinking.

She called and asked the medical care manager at the Lincoln doctor's office-where the blood was to be drawn-what the tests were for. The manager said that the blood was for a genetic test and referred Avary to Burlington Northern's corporate office in Fort Worth, Texas.

Avary said she questioned two people in the corporate office, who she said threatened to fire her husband if he didn't take the blood tests.

"I got these people to say the wrong word:'genetic testing,'"she said.

Avary then called her husband then a lawyer.

The other workers named in the civil-rights suit are Escher of McCook, John B. Wiebelhaus of Fordyce, Neb., and Tim Nordloeff of North Dakota.

Wiebelhaus said he didn't know what was wrong with his hands and forearms when they began hurting as he worked on track maintenance for the company.

"I had never heard about carpal tunnel syndrome," said Wiebelhaus, a Burlington Northern worker since 1993.

He went to a doctor and was diagnosed with the repetitive-motion injury. "When I do a lot of heavy work, it really aggravates it,"he said. "It's pretty painful."

He filed an injury report with the railroad.

Wiebelhaus said Burlington Northern has not ordered him to give blood for genetic testing. The lawsuit is intended to stop the process before Wiebelhaus receives the order, which could bring a charge of insubordination if he refuses.

"It's shocking, kind of," Wiebelhaus said. "You shouldn't have to submit to something like that."


An attorney representing the rail workers, Russell Ingebritson of Minneapolis, helped the union file a complaint with the commission 10 days ago. That apparently led to the government lawsuit Friday.

The Brotherhood of Maintenance of Way Employees also filed its suit Friday in Sioux City, naming the railroad and Athena Diagnostics, a commercial genetic-testing lab in Worcester, Mass.

Ingebritson said that a hearing on the union suit will be held within 60 days.

The railroad has agreed to discontinue testing until then.

Attorneys working on behalf of the union contend that, since fall, Burlington Northern has collected blood samples from at least 125 union workers and done genetic testing on 18.

Ingebritson said the testing"violates explicit statutes in about half the states."

Twenty-two states have banned the use of genetic screening for making employment-related decisions.

The government lawsuit said that the employees were not asked to consent to the tests and that at least on worker who refused to provide a blood sample was threatened with losing his job.

Russack, the railroad spokesman, said the company does ask employees who file disability claims for carpal tunnel syndrome to undergo genetic testing, which he said he could show that the injury was not work-related. But he denied that anyone had been disciplined or threatened for refusing.

"If somebody doesn't want to take the test, fine. There is no disciplinary action for refusing," he said.

The railroad tested the samples for chromosome 17 deletion, the commission said. Some studies have suggested that would predispose a person to some form of carpal tunnel syndrome.

"It's hard for me to imagine why the company would want to do the test," said Wylie Burke, professor and chairman of the Department of medical History and Ethics at the University of Washington in Seattle. He said the condition that the test detects is extremely rare-affecting between two and five people out of 10,000.

Burlington Northern, which is based in Fort Worth, has 33,500 miles of track in 28 states and two Canadian provinces. It is the second largest railroad next to Omaha's Union Pacific Corp.

http://www.omaha.com/index.atp?u_div=3&u_hdg=2&u_sid=67097

 


 




Telling Them No

People Magazine 7/9/01

When Gary Avary's company wanted to test his DNA, he and wife Janice chose to fight for their privacy

From the start, Janice Avary was suspicious. Her Husband, Gary, 45, who had been repairing rail lines for 27 years, had already had surgery for the carpal tunnel problem in his right wrist he had developed from handling heavy equipment. Plus, his insurance had paid most of the bill. Still, his employer, the Burlington Northern Santa Fe Railway, ordered him to submit to a series of tests or face disciplinary action. And he wasn't the only one. Thirty-four other employees received similar orders. One told Janice, 46, a nurse in the Avary's tiny hometown of Alma, Neb. (pop.1,225), that he had been asked to provide and extraordinary seven vials of blood. What kind of tests," she wondered, " are they possibly going to do from blood work to tell them about carpal tunnel?"
Avary got her answer when she pressed the company's medical liaison officer for details. After a few minutes the woman mentioned something about "a genetic test." Clearly what the company wanted were samples of Gary Avary's DNA. Janice was stunned. "I thought, "Oh God. This is all very weird,'" she recalls. And, she believed, and invasion of her husband's privacy. When Gary refused to keep his appointment for the tests, he promptly received a letter from BNSF saying he was under investigation for noncompliance. "All Gary and I could do is look at each other," says Janice. "We had found this really big problem, but now what do we do?"
In the first case of its kind, the Equal Employment Opportunity Commission filed suit Feb. 9, on behalf of Gary and other BNSF employees, claiming the company's DNA testing violated their privacy rights under the Americans with Disabilities Act. The EEOC was concerned employers could someday use genetic tests to discriminate against potential employees because they might be susceptible to certain medical problems. "It is a very powerful case, because it is such a clear misuse of new testing technology," says Mary Davidson, executive director of the Genetic Alliance, a coalition of hundreds of genetic-disease support groups. "Burlington railroad got caught with its pants down."
BNSF, which says it began the tests to determine whether genetic predisposition or workplace factors led employees to file carpal tunnel claims, admitted to testing 20 workers and ended the program. It also sent a letter of apology to all employees. "It is hard to conclude we really did something horrible," says BNSF spokesman Richard Russack. "Could we have a done a better job of communicating? Absolutely!"

On April 18 the company formally agreed with the EEOC to stop testing and began negotiating a settlement that could mean up to $300,000 per victim. The Avarys have also found themselves at the center of a growing national debate. The news this winter that the human genome had been mapped added urgency to the push by federal legislators for laws forbidding genetic discrimination in the workplace. "It is only because of pioneers like them that we are going to be able to make our case,"Senate Majority Leader Tom Daschle of South Dakota says of the Avarys.
In fact, they never set out to do anything more remarkable than stick up for their rights. The oldest of five children, janice grew up in Holbrook, Neb., the daughter of a cattle trucker and his homemaker wife. Just 20 miles down the road, in Beaver City, Gary was the second of three children of a trucker and a nurse's aid. They met at a New Year's Eve party in 1972. "What do you do at a New Year's Eve Party?" asks Janice. "You kiss! So there was a kissing contest going on, and we won it."
Together ever since, they have raised three daughters: Marie, 27, a nurse; Darla, 25, a nursing assistant; and Elsa, 17, a home schooled student. In large part for the benefits, Gary took a job with the railroad in 1974. Then, last July, his fingers went numb as he worked with a power wrench at the sight of a derailment. "I could bite down on the ends of my fingers and not even feel them," he says. The diagnosis was carpal tunnel syndrome. He returned to work three weeks after his operation.
The Avarys count Gary's workmates as extended family and say they never meant his or anyone else's livelihood by suing the company. But neither did they feel they could ignore the DNA testing. "Everyone has a mortgage and car payments, and you don't want to rock the boat too bad," says Janice. "But then again, you have to look at the consequences if you don't."

The dark side of genetic testing

Railroad workers allege secret sampling

By Dana Hawkins

February 19, 2001

John Wiebelhaus, a fourth-generation railroad man, makes his living with his hands, laying miles of track, repairing heavy steel rails, and picking ice from the track's switches. Tough work- but Wiebelhaus loves it. "I like the idea that tracks I lay could be there 100 years," he says. "It's in my blood."
That may not be all that's in his blood, which is why, the track-maintenance foreman, his employer, the Burlington Northern Santa Fe railroad, has been secretly testing the blood of workers with carpal tunnel syndrome. "The railroad wants to be able to say: <You were a time bomb. Because you are genetically predisposed to the disease, you would've gotten it whether you were a soda jerk or running a jackhammer,'"says Harry Zanville, an attorney for the railworkers' union that last week filed a lawsuit, along with Wiebelhaus, to force the company to stop the alleged covert testing. He claims that 125 workers recently gave blood samples and that at least 18 were subjected to gene tests without the employees' consent. The reason: Money, says Zanville, insisting the company hopes to avoid paying out millions in medical bills and disability to workers who develope the painful musculoskeletal disorder on the job.
The federal court lawsuit, the first of its kind against a private company, charges that the furtive testing violates the Americans with Disabilities Act and several state laws barring DNA testing by employers. The U.S. Equal Employment Opportunity Commission filed a separate petition, also in a federal court in the Northern District of Iowa. The EEOC alleges that the Fort Worth-based railroad required blood samples from workers who had submitted claims arising from carpal tunnel injuries. The blood was then allegedly tested for a genetic defect that may predispose a person to some forms of the ailment. Athena Diagnostics, the lab that allegedly conducted the tests, is also a defendant in the union's case.
Hidden reason. Gary Avary, a BNSF employee, says he discovered the alleged covert screening last month after he received a letter from his employer directing him to get his blood tested. The Nebraska track laborer had recently returned to his job after successful carpal tunnel surgery. The lawsuit alleges that when his wife, a registered nurse, inquired about the test "the secret intentions of the BNSF were inadvertently revealed." After Avary refused to take the test, the company informed him that he would be investigated for failing to cooperate. A railroad spokesperson says BNSF doesn't require workers to submit to genetic testing but that "some employees were asked to take a test."

The railroad employees are encouraged by a federal court's approval last December of a settlement in a case involving the genetic privacy rights of workers at Lawrence Berkeley Laboratory. As first reported by U.S. News, LBL workers for decades were tested without their knowledge for syphilis, pregnancy, and the genetic trait for sickle cell disease. President Clinton last year banned genetic discrimination against federal employees, but Congress has not extended the rule to the private sector. "It's important for the public to have confidence that genetic tests will be used for the benefit," says Paul Billings, cofounder of GeneSage, a company that promotes responsible DNA screening. "Unfortunately, this case suggests that were still in the dark ages of employment-based testing."
Geneticists in particular question the legitimacy of the carpal tunnel test. They point out that the disease is a common workplace disability, and mutations of it are extremely rare. "I'm a humanist physician. I try hard to make the world a better place," says Phillip Chance, a geneticist at the University of Washington in Seattle, who discovered one of the mutations. "This would be the last thing I would like to see happen with my work.”

Three Minnesota BNSF employees join genetic-test lawsuit

By Melanie Evans News Tribune Staff writer

March 28, 2001

Steven Ray Keil doesn't know the results of an August medical exam that analyzed his genetic code for a possible glitch. Steven Ray Keil doesn't know the results of an August medical exam that analyzed his genetic code for a possible glitch.

He's not sure he wants to.

It wasn't until mid-February that the Aitkin man learned doctors hired by his employer used his blood samples for a genetic test.

"It's like looking into a crystal ball, I suppose," he said. Keil's employer, Burlington Northern Santa Fe Railway, recently offered to return his results or destroy them.

He hasn't decided yet. "You might see something you don't want to see."

Keil's wife suggested turning down the offer to review his genetic data, he said. "<Do you really want to know what's going on?' she said."

Keil is one of the three northern Minnesota employees of Burlington Northern whose claims of on-the-job hand and wrist injuries received additional scrutiny under an 11-month old genetic testing policy by the railroad, according to a union representing the men.

Burlington Northern also tested blood samples of Robert Damyanovich of Nashwauk and Charlie Nelson of Holyoke, said Charles Collins, a private lawyer working for the Brotherhood of the Maintenance of Way Employees.

In March 2000, Burlington Northern Added the genetic analysis to a list of tests designed to pinpoint the cause of an employee's carpal tunnel injury, said Richard Russack, spokesman for Burlington Northern.

If the test demonstrates a genetic predisposition to the condition, that may rule out the job as the culprit, Russack said.

Burlington Northern is only liable for work-related injuries.

On Feb. 9, the Equal Employment Opportunity Commission filed a lawsuit against the railway, claiming that the railroad's genetic testing violates the Americans with Disabilities Act.

The Brotherhood of Maintenance of Way employees, a national union that represents 8,000 Burlington Northern Workers, filed a second suit, saying the railroad required the tests without the union's knowledge or employees' consent--a move that violates labor laws and dozens of state statutes.

The railroad denies analyzing the genetic information without employees' consent.

On Feb. 12, the railroad announced it would voluntarily stop the testing.

Neither the union nor the EEOC dropped their lawsuits, which seek a guarantee that employees won't be subject to retaliation or further genetic testing.

A hearing on the two lawsuits is scheduled for April 16 in U.S. District Court in Sioux City, Iowa.

On Tuesday, a bill that says employers cannot "request , require or administer a genetic test to any person as a condition of employment" cleared the Minnesota House Commerce, Jobs and Economic Development Committee.

The proposed law, introduced by Rep. Phyllis Khan, DFL-Minneapolis, is backed by the Brotherhood.

"This is a major step in the right direction," said Karl Knutsen, the Union's state legislative director. Twenty-two states, including Iowa and Wisconsin, have laws barring genetic discrimination by employers, he said.

A 1998 Minnesota law forbids such discrimination by health insurers.

Keil knew nothing of the genetic testing--or the lawsuits--until late February, after he returned to work from two surgeries to treat his inflamed wrists and hands.

Shop talk about the testing sent Keil back to his medical records, curious to see if he had been tested.

He found an answer in notes from a St. Cloud doctor:

"In addition, the patient will be sent the following tests to rule out secondary causes of the carpal tunnel syndrome, as requested by his employer...genetic testing for...palsy neuropathy."



 


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