I first wrote about genetic discrimination in the workplace in August of 2004. At that time, I compared it to the movie Gattaca, in which a man tries to hide his “imperfect” genetic makeup so that he can enjoy a way of life and secure a job reserved for people without “flawed” genes. Although Gattaca is science fiction, the movie’s plot is not that remote from present-day reality.
The Human Genome Project, which identifies all 80,000 genes in human DNA, was completed in 2003, and ushered in the next step in genomics. Researchers predicted in 2003 that data from the project would eventually allow people to be tested for genetic predispositions to diseases and other illnesses, and subsequently take the medical and lifestyle precautions that will minimize the risk of developing the diseases to which they are prone. Genetic testing holds the promise of improved health for Canadians and others, but as the example of Gattaca suggests, it could also easily be abused. Researchers at that time investigated how genetic testing might be used to screen employees for diseases that could affect workplace performance.
One of the concerns about genetic testing is that people’s genetic data would be available to employers and insurance companies, and they might use that data to discriminate against employees and potential employees with a genetic makeup that could affect workplace performance.
Researchers speculate, moreover, that genetic testing will eventually be able to indicate whether exposure to a specific work environment will increase a person’s predisposition to certain diseases or injuries. In 2004, Tim Caulfied, a law professor at the University of Alberta’s Health Law Institute, said there was reason to believe that genetic testing would be able to reveal health risks that can legitimately affect workplace performance, thus giving employers a right to discriminate under current legislation.
In 2004, in an article for OHS Canada, Mark Sabourin, a freelance writer specializing in workplace health and safety issues, gave an example of where this might lead:
A man (is) worried about his family history of Huntington’s Disease, a degenerative neurological disorder. The disease is inherited and strikes more men than women, although women can carry and pass on the defective gene. If anyone in your direct line—your father, brother, uncle, grandfather—has the disease, you may get it too. Or not. Symptoms usually don’t appear until your late thirties, forties or even later.
This man had such a family history and he worried that he would get it. When a genetic test for the disease became available, he decided to take it. The result came back positive. The man’s geneticist advised him to report the results to his employer, but he refused, agreeing instead to be neurologically tested every month for clinical symptoms of the disease. The patient fears, with good reasons, that disclosure of his genetic makeup will cost him his health insurance and his job. It might also cost his two brothers their jobs because they’re in the same line of work.
Well, they were right.
On November 21, 2009, the most sweeping federal anti-discrimination law in nearly 20 years, The Genetic Information Nondiscrimination Act, took effect in the United States, prohibiting employers from hiring, firing or determining promotions based on genetic makeup. Additionally, health insurers are not allowed to consider a person’s genetics—such as predisposition for Parkinson’s disease—to set insurance rates or deny coverage. The point of the legislation is to ensure that no one is denied a job or the right to be treated fairly in the workplace based on fears that he or she might develop some condition in the future.
Genetic testing, like alcohol and drug testing, has the potential to provide a method for employers to discriminate against potential and current employees. It could also become liability issues for employers. The concerns include whether employers who have genetic information about their workers may be held liable for keeping that personal health information in their files.
According to the Human Genome Research Institute, no genetic-employment discrimination cases have been brought before the courts yet. However, the US government through the Equal Employment Opportunity Commission (EEOC) filed suit in 2001 against the Burlington Northern Santa Fe Railway Co. under the Americans with Disabilities Act for secretly testing some workers for a genetic defect that some believe can predispose a person to carpal tunnel syndrome. The railway settled the EEOC suit for $2.2 million (read the BNSF press release at http://www.bnsf.com/media/news/articles/2002/05/2002-05-08-a.html).
Unfortunately, whereas the US and Europe are paying considerable attention to these issues, Canada is lagging behind in its willingness to examine the legal and ethical ramifications of genetic discrimination in the workplace.
Still, in 1995, the Office of the Information Privacy Commissioner of Canada published a very interesting document. Genetic Testing and Privacy looks at genetics in the context of the Personal Information Protection and Electronic Documents Act. For what it’s worth (it is over a dozen years old now), it is a good read. You can download it at www.priv.gc.ca/information/02_05_11_e.pdf.
Yosie Saint-Cyr
Human Resources and Compliance Managing Editor
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More information about the human genome project you can find in:
http://www.geneticsofpregnancy.com/Encyclopedia/The_human_genome_project.aspx
This site contains information On Pregnancy Diseases And Genetic Testing.