An employer can't legally fire you because he doesn't like your religion, your sex, your sexual orientation, or other protected characteristic. But what if he doesn't like your DNA?
The Controversy Over Genetic Discrimination
You
consider yourself to be in excellent health, but a test shows that because
of your genetic makeup, you are at greater than average risk of developing
cancer, Parkinson's or another serious disease–10 or 20 years in
the future.
Your employer obtains this information, and–fearful that you may eventually develop an illness that could raise its health care costs–fires you.
Have you been a victim of illegal discrimination?
Maybe. Or maybe not.
As scientists continue to decipher the code that contains our genetic map, with the promise of exciting new discoveries and medical breakthroughs comes the threat this new knowledge may be used for purposes our society generally condemns, including discrimination.
"Genetic testing and the permissible use of that data is going to be a cutting edge issue," predicts Commissioner of Human Rights Janeen Rosas. "Some employers want to know as much as they can about a person, so they can avoid hiring people who will develop expensive illnesses. Genetic testing provides a powerful new mechanism for collecting data that some employees themselves may not want to know."
Neither the state Human Rights Act nor the ADA specifically prohibits genetic testing, or outlaws "genetic discrimination" as race, sex, and age discrimination are banned. But some restrictions and guidelines are already in place that would seem to limit the use of genetic information.
"Although Minnesota law doesn’t prohibit genetic testing, it does prohibit inquiring into non job-related medical issues," says Steve Lapinsky, supervisor of the Department’s disability employment unit. "A physical exam must be related to the ability to perform a job. And whether I’m going to die in 20 years from a cancer I don’t have yet, is not job-related," Lapinsky argues.
As for the ADA, "I’m not saying genetic testing is or isn’t prohibited by the ADA, because I don’t think we’ve answered that," says Laurie Vasichek, a senior trial attorney for the EEOC.
Vasichek has not seen any "clear cut genetic testing cases" yet. But cases involving other tests designed to predict the likelihood of developing a disability have come to the EEOC’s attention. "You’re seeing this particularly with carpel tunnel and electric induction tests–you get this test that shoots a laser or some electric conduction, and the doctor comes back and says your risk is high for developing carpel tunnel. The EEOC is taking the position that this is illegal," says Vasichek. "And I can imagine similar things being done with regard to genetic testing."
This year saw the rise of new protections against genetic discrimination for federal employees. In February 2000, President Clinton signed an executive order (No. 13145) prohibiting discrimination in federal employment based on genetic information.
Among the practices prohibited (with limited exceptions):
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Engaging in adverse employment actions on the basis of protected genetic information (you can’t fire or refuse to hire someone because of a genetic test).
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Requesting, requiring, collecting or purchasing protected genetic information about employees.
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Maintaining protected genetic information in general personnel files, rather than in confidential medical files.
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Disclosing protected genetic information about employees.
"No employer should ever review your genetic records along with your resume," declared the President in signing the order. He expressed the hope that the order would "set an example and pose a challenge for every employer in America to adopt a policy not to discriminate on the basis of protected genetic information."
Minnesota law recognizes genetic discrimination and prohibits it–in health insurance matters. Health plan companies cannot require an individual or a blood relative to take a genetic test, or inquire about or consider whether such a test was taken or refused, or consider the results, under the state’s Genetic Discrimination Act (Chapter 72A.139)
But more needs to be done, much more in the view of Paul Stephen Miller, a commissioner of the EEOC.
"Workers fear that employers will use genetic information to lower their insurance and sick leave costs by weeding out individuals who have traits linked to inherited medical conditions," he said in an address delivered earlier this year at the University of Maryland Law School. "There is both hard and anecdotal evidence indicating that employees’ fears are not baseless, and that the problem will only get worse as technology develops."
He also maintains that although genetic discrimination is not explicitly addressed in the Americans with Disabilities Act, discrimination against an individual who may be predisposed to develop an illness–based on the results of a genetic test–would be illegal under the law’s provision that protects a person who is "regarded as disabled." The state Human Rights Act also says that a person who is "regarded as having a disability" is protected from discrimination in employment and other areas.
Bills have been proposed in both houses of the U.S. Congress to extend the protections against genetic discrimination now accorded to federal workers to the private sector as well, and states have begun to enact similar laws.
While the results of a genetic test could affect virtually anyone, those who have family members with genetic disorders are especially fearful of discrimination–perhaps with good reason. In a 1996 study of 332 members of genetic support groups with one or more genetic disorders in the family, 13 percent believed that they or a family member had been denied a job, or let go, for genetic reasons. Fearing that they might be fired, almost one in ten had refused to be tested for genetic conditions, and 17 percent had chosen not to reveal genetic information to their employers.
There is also fear that with prevalence of pre-employment testing for drug use–which is generally legal–and other kinds of health screening, insurers and employers may have an opportunity to gather other data. "If you get a blood test or a drug test pre-employment, who knows what they are going to do with that blood sample? There is concern that an employer could look at those tests and see things about you that you probably don’t even know about yourself," comments Lapinsky.
"Genetic testing must not become an alternative means for employers to collect disability-related data they are already prohibited from collecting through job applicants’ completion of personal and family health history forms," he adds.
If a genetic test showed they were at high risk to develop a serious illness, some Americans might not want to know. In one poll, more than one third said they would prefer to not be told if they were genetically predisposed to get a disease later in life. But fully 87 percent would not want their employers to know, according to a study by Georgetown University.
As science races ahead, our laws and institutions lumber to catch up. The unfolding of our genetic map has placed human society deep in uncharted territory. There is only one certainty: there will be more news later.
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This material previously appeared in the Fall 2000 issue of the Minnesota Department of Human Rights' newsletter,The Rights Stuff. |
