Bill S-201 renews debate on genetic testing

Looks to protect workers around use of information by employers, insurance companies

A recent revision of Bill S-201 is renewing debate about genetic testing and its role in the workplace.

The Genetic Non-Discrimination Bill — first introduced in 2013 as Bill S-218 before being tabled and subsequently reintroduced — would ensure the results of genetic testing cannot be collected or used without written consent. The bill would protect any information acquired through the testing of DNA, RNA or chromosomes.

Additionally, the legislation aims to give citizens and employees the right to refuse genetic testing altogether without discrimination. Exemptions are made, however, for genetic testing required by physicians, pharmacists or other health-care practitioners, as well as for testing conducted as part of medical, pharmaceutical or scientific research.

To further protect genetic information, the bill includes provisions to various conventions including the Canada Labour Code, the Canadian Human Rights Act and the Privacy Act. 

Legislation specific to genetic information is necessary because of the potential for discrimination, said Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness (CCGF) in Kitchener, Ont., adding the information data scientists can glean is very complicated.

“I don’t think you could educate and train employers enough to understand the information the way they should and not use it in a judgmental way. It’s frightening to think employers might have access to that information and misuse it.”

The results of genetic testing do not belong in the hands of insurers or businesses, even as more employers are exploring the possibility of using genetic testing in an effort to make health and wellness programs more efficient, she said.

“People don’t really understand it yet,” said Heim-Myers. “This information probably creates more questions than answers. But an employer could see that a person has a predisposition to Alzheimer’s disease or Parkinson’s disease and think, ‘Gee, I don’t want to employ this person because in the future they’re going to be a drain on my benefits package.’” 

Multiple reports available
23andMe, a personal genomics and biotech company based in Mountain View, Calif., provides genetic information to consumers. The company offers reports on health, traits and ancestry to Canadian customers through a process known as genotyping, said media relations representative Andy Kill. 

While genetic sequencing examines the entire genome, genotyping looks at specific points or variations of the genome, and 23andMe examines 700,000 unique variations, he said. 

Health reports from the company include genetic risk factors — which describe variations in the genome that can impact risk for various diseases such as Alzheimer’s disease and Parkinson’s disease — and inherited conditions, which describe carrier status, said Kill.

Additionally, drug response reports are available as variations of the genome can impact how an individual reacts to certain types of drugs. This is of interest to employers as it can impact health and wellness programs, he said.

“The science behind the reports, it’s always advancing, but it’s pretty mature at this stage as far as the genotyping process,” said Kill. “We have a high threshold in our testing process where, if we can’t say with a very high degree of certainty that you have a certain variant, we will report that as what we term a ‘no call.’ It’s a fairly well-established scientific process.” 

Canada unique
But there are concerns about the way genetic information could be used in the future. 

“Canada is rather unique in the Western world where it doesn’t really have legislation that protects against genetic discrimination,” said Peter Engelmann, partner at Goldblatt Partners in Ottawa. 

Canada is the only G7 country without protections in place for genetic information. Currently, an employee experiencing discrimination based on genetic information would have to file a human rights complaint. These issues become increasingly difficult because of the perceived discrimination involved, he said.

“It really is perceived in the sense that, in the vast majority of cases, just because you have the gene doesn’t mean you necessarily get the disease or that you get the symptoms that are associated with the disease,” said Engelmann. 

“Employers have to be very careful if they get this information because it doesn’t necessarily mean someone is disabled from working. In many cases, people with a number of illnesses are totally asymptomatic and perform their work without problems.” 

Legislation specific to genetic information is necessary because confidentiality policies alone are not enough to protect against discrimination, he said. Even if employers never ask about the results, that information may still become available.

“I can’t think of an instance where there would be any legitimate reason why an employer should be able to ask an employee about the result of his or her genetic test, but these things get out,” said Engelmann. “Someone puts it on social media or it becomes available other ways. Businesses can become aware of this information quite inadvertently.” 

Specific legislation is also crucial because of jurisdictional concerns, he said. In 2015, the senate’s Conservative-dominated human rights committee voted to remove eight of the bill’s 11 clauses due to concerns of jurisdiction, specifically concerning the insurance industry and how it might be impacted by federal regulation of genetic information incorporated in health and wellness programs.

“Would it be helpful to have provincial laws that deal with this issue as well? Probably,” said Engelmann. 

“The problem is when you look at all these other countries that have protections for genetic information, it’s all federal legislation. I think it’s because of the national importance that has been given to this topic. It’s complicated because, unlike many countries, our health, education and so many of these regulations are provincial affairs.” 

As a result, constitutional challenges based on jurisdiction are more common in Canada, he said.

“Insurance companies may well try and fight this,” he said. “But I think this version of the bill is more likely to withstand any kind of attack of that nature. You would hope the country would get behind it.” 

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