Bill to Protect Employees From Disclosing Genetic Test Results

The day after the federal government identified genetic discrimination as a priority in its speech from the throne on October 16, 2013, Senator James S. Cowan re-introduced Bill S-201, An Act to prohibit and prevent genetic discrimination in the Senate.

Bill S-201 would prohibit any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract with, or offering specific conditions in a contract with, the individual. In addition, this Bill would amend the Canada Labour Code to protect employees from being required to undergo or to disclose the results of a genetic test, along with other with other related protections. It would also amend the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics.

The broad aim of the Bill is to ensure that genetic information is used for health and research purposes only.

In addition, on November 4, 2013, Ontario private member’s Bill 127, Human Rights Code Amendment Act (Genetic Characteristics), 2013, received first reading. That Bill would amend the Ontario Human Rights Code to include genetic characteristics as a prohibited ground of discrimination and offer individuals similar protections.

I first wrote about genetic discrimination in the workplace in August of 2004 on HRinfodesk. At that time, I referred 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 career 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 will 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, the practice could also easily be abused.

Researchers at that time investigated how employers and insurance companies might use genetic testing to screen employees for diseases that could affect workplace performance or safety. Indeed, genetic testing may 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.

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 a person’s genetic makeup. Additionally, the law prohibits health insurers from considering 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 raise the issue of liability for employers; for example, employers who have workers’ genetic information in their files will be responsible for its safe-keeping and may be held liable for any misuse.

According to the Human Genome Research Institute, no cases of genetic discrimination in employment 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.

Unfortunately, whereas the US, United Kingdom and several European countries are paying considerable attention to these issues, Canada has lagged behind and only now is examining the legal and ethical ramifications of genetic discrimination in the workplace.

The government hasn’t completely ignored the issue however. In 1995, the 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. Despite its age (it is nearly 20 years old now), it contains much valuable information about genetics, testing and the implications thereof. You can download it at www.priv.gc.ca/information/02_05_11_e.pdf.

At any rate, it is good news that the government is acting, and depending on the precise language of the Bill, it is likely an issue that all parties can support.

While it is crucial to consider the dangers associated with scientific and technological advances that have the power to profoundly affect humanity, we should also dwell on their potential for good and what they might mean to us today. If genetic discrimination is prohibited, it is likely that employers will have to accommodate employees with genetic dispositions to various conditions—disabilities, diseases, psychological issues, etc. Employers might see this as a negative development, but as accommodation becomes increasingly common, employers may recognize that it is actually a valuable method to help employees reach their potential and to refine health insurance benefits and employee assistance programs.

Employees may also use their genes to support their claims for positive changes to workplaces. Employees disposed to diseases and injuries could seek help following preventive treatment plans. An employee disposed to back trouble could request a standing desk and leave to move around the workplace. An employee disposed to social anxiety could request support and understanding. And all should feel free to do so without fear of being punished for their genetic makeup.

Yeah I know… they haven’t made that science fiction movie yet!