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A Test for Genetic Privacy
Concerns voiced over firms’ ability to access, abuse employees’ data
Track maintenance worker Gary Avary had already undergone the surgery prescribed for his wrist pain and was back at work when his employer, the Burlington Northern Santa Fe railroad, ordered him to get a blood test.
The railroad said the test was to see if he had genetic deficiency -- one that might show his problem, carpal tunnel syndrome, was hereditary.
Trouble was, Avary claims he didn’t know this until later.
And the fuss that followed his discovery has stirred up fresh concern that, along with its promises of better health, the fast-moving world of genetic research has potential for abuse in the workplace. Reports have been rare of individual rights being violated by unauthorized use of personal genetic data. Following a flurry of worry in the 1980s sparked by a growing understanding of what genetic research could reveal, 37 U.S. states, including Massachusetts, now restrict or bar using such information in employment or insurance decisions.
But now the issue is a federal matter. Alerted by the union representing Avary and other track workers, the US Equal Employment Opportunity Commission (EEOC) went to court in mid-February 2001 to file its first ever genetic-testing antidiscrimination lawsuit against the Burlington Northern Santa Fe Railway.
"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 Castro said in a statement.
The EEOC action came as the federally sponsored Human Genome Project and a parallel private sector effort announced a milestone in genetic research -- the mapping of all the 30,000 genes in the human body.
That data set the stage for research into the causes and effects of many maladies that are not now well-understood.
Judy Malone, an employment law specialist with the Boston law firm of Palmer & Dodge, thinks that as the genomic Pandora’s Box opens further, employers will find it hard to resist the impulse to match individual genetic traits with job requirements.
"There are some [abilities] that probably do have a genetic component. An employer could make the argument that, ‘It would be nice to know ...’ There are a lot of things that would be nice to know, and there are laws against it," she said.
Andy Pickett, a lawyer at Jackson Lewis Schnitzler & Krupman in Boston and cochairman of the Boston Bar Association’s labor and employment law section, added: "I think everyone is uncomfortable with the situation and the Orwellian images that it can conjure up."
The Burlington Northern Santa Fe railroad acknowledges that as many as 20 employees were asked to give blood samples for genetic analysis. It has since suspended the tests and agreed, under a temporary court order, not to use the data gained so far. The EEOC is continuing its investigation. The union, the Brotherhood of Maintenance of Way Employees, also wants the railroad to explain how it planned to use the information. Railroad spokesman Richard Russack said some scientists think there may be a link between carpal tunnel syndrome and a specific chromosomal deficiency. He said the company health plan already covered medical costs to repair carpal tunnel damage. The genetic information was being sought to learn if some workers had a predisposition for such injuries.
But he added the railroad’s medical staff hadn’t decided what to do next before the court order came down. "I can’t say what would have happened. We never got that far," he said. The EEOC’s action has put public officials and employers on alert.
Senate Democratic leader Tom Daschle leapt on the news to announce the filing of a bill, cosponsored by 150 House and Senate members, that would bar discrimination nationally in employment or insurance on the basis of genetic information.
Massachusetts became the latest state with such legislation when its law took effect in late November 2000. State Representative Jay Kaufman, the primary sponsor of the state’s law, said it was prompted more by worry than actual abuses. "It didn’t take much imagination to consider what might lie ahead," he said.
Dorca Gomez, chairman of the Massachusetts Commission Against Discrimination, which is charged under the new law with dealing with worker complaints, has been attending seminars sponsored by insurance organizations, law firms, and the Kennedy School of Government to learn more about the subject.
She said any complaints will be treated with caution.
"This is brand new territory," Gomez said. "There is a balance you have to strike between employers and employees."
Surprisingly, few court or public policy disputes over genetic privacy have been recorded in the 48 years since the double helix of DNA was first described publicly.
One dispute was over the US military’s refusal until after 1980 to let African-Americans train as pilots if genetic tests showed a trait for sickle-cell anemia. The ban ended only after a class action suit delivered evidence that debunked the government’s claim that pilots with this trait were likely to pass out when deprived of oxygen -- a possibility at high altitudes.
In 1999, a federal Appeals Court in California ruled that Lawrence Livermore Laboratory, a national research facility, violated the civil rights of thousands of female employees by conducting tests for syphilis, pregnancy, and the sickle-cell trait, without proper disclosure.
In a survey released last October, the American Management Association said just seven out of 2,100 employers reported doing genetic testing with the consent of employees. About 350, however, said they conduct tests related to workplace hazards, which can include genetic tests.
Dorothy Wertz, a social science researcher at the University of Massachusetts Medical School’s Shriver Center in Waltham, says surveys she has conducted also suggest relatively few violations of genetic privacy connected with employment.
About 3 percent of 476 patients at 15 genetics clinics surveyed in 1995 reported being refused employment or insurance because of an inherited disease or disability, she said.
Follow-up inquiries, however, found some of those refusals were clearly job-related, Wertz said, including one person turned down for a firefighter job because of chronic bronchitis and another denied an editing job because she had cataracts.
"If someone can’t do the job, the employer is justified in letting them go," Wertz said. But Dr. Paul Billings, a founder of GeneSage, Inc., a San Francisco genetics services company, thinks the cases that do make news, such as the Burlington Northern Santa Fe railroad’s, represent only the tip of a larger problem.
"No employer would admit doing such things," Billings said, "but the fact that we can detect any of it means that it is, in fact, going on."
Copyright 2001, The Boston Globe, all rights reserved. Reprinted with permission of the author. Jerry Ackerman can be reached by e-mail at ackerman@globe.com. 1. A reference to the "utopian" society described in George Orwell’s 1984 (London, 1949), in which people are bred to have the level of intelligence appropriate to the tasks society needs them to perform, from leaders to street-sweepers.
For additional information on this important topic, see Mark A. Hall and Stephen S. Rich, "Laws Restricting Health Insurers’ Use of Genetic Information: Impact on Genetic Discrimination." American Journal of Human Genetics, 66:293-307, 2000.
What legislation has been passed in your state?
Go to http://www.nhgri.nih.gov
Click on Policy & Public Affairs; then click on Policy & Legislature activities.
This listing includes legislation regarding employment and health insurance discrimination.
Please report any suspected incidents to:
Emily Soper, Program Support Coordinator
As printed in the VHL Family Forum 9:1, March 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org. |
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