Genetic testing put to the test

Prohibitions around use of results opposed by insurance industry
By Sarah Dobson
|Canadian HR Reporter|Last Updated: 04/05/2017
Molecular Genetics
Molecular genetics technical specialist Jaime Wendt (right) and Mike Tschannen work in the Human and Molecular Genetics Center Sequencing Core at the Medical College of Wisconsin in Milwaukee in 2014. Credit: Jim Young (Reuters)

A move to further prohibit and prevent genetic discrimination has been met with concern by the insurance industry — though employee advocates are praising the move.

Bill S-201 was awaiting royal assent as of March 8, but a potential hiccup emerged when the federal government said it wanted the Supreme Court of Canada’s advice on the constitutionality of the act. Genetic testing involves the sequencing of human DNA to reveal genetic differences, anomalies or mutations that may prove pathological.

If passed, the bill would amend both the Canada Labour Code and the Canadian Human Rights Act in prohibiting 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 or agreement with, or offering specific conditions in a contract or agreement with, the individual,” with exceptions for health-care practitioners and researchers.

While current human rights, occupational health and safety, labour and employment laws do provide strong protection against discrimination on the basis of genetic testing, the desire to make the protection explicit is understandable, said Karen Jensen, a partner at Norton Rose Fulbright Canada in Ottawa.

“As genetic testing becomes more sophisticated, accurate and prevalent, the need to address concerns about the use that can be made of this information is legitimate.”

Insurance industry concerns

But the life and health insurance industry is extremely disappointed with the development, said Wendy Hope, vice-president of external relations at the Canadian Life and Health Insurance Association (CLHIA) in Ottawa, in a statement.

“The industry agrees with the federal government’s position — as expressed by the Prime Minister and the Minister of Justice, as well as a number of provinces — that an important element of the bill is unconstitutional.”  

The insurance industry also has a longstanding code related to genetic testing that ensures no one will be required to undergo a genetic test as a condition for insurance coverage, she said. The group also said recently it would not ask for genetic testing information for life insurance applications below $250,000.

The CLHIA also cited unintended consequences to the legislation, such as the affordability of insurance. This sentiment has been echoed by the Canadian Institute of Actuaries. In a 2016 report, it said prohibiting life insurance companies from accessing the results of genetic tests for the purpose of underwriting a potential insured would “create an imbalance of information” and average critical illness insurance (CI) claim rates would likely increase by about 26 per cent overall, or 16 per cent for males and 41 per cent for females ages 30 to 65.

“There would be a concomitant increase in CI premium rates,” it said.

The baseline assumption in the model was that 75 per cent of people who tested positive would apply for $250,000 of insurance, and the rest would not seek additional insurance.

“The greater the publicity surrounding the prohibition, the higher will be the proportion buying CI,” said the CIA.

In 2014, the institute also said term life insurance premium rates could go up by 30 per cent for males and 50 per cent for females.

“The CIA does not support mandatory genetic testing,” said Jacques Tremblay, president of the CIA. “That said, we do believe that if relevant test results are available, they must be shared with the insurer in order to preserve the integrity and proper functioning of the insurance mechanism and, ultimately, to protect consumers against costly anti-selection.”

However, also in 2014, the Office of the Privacy Commissioner of Canada commissioned two papers by experts in actuarial science and economics, and they agreed “the impact of a ban on the use of genetic test results by the life and health insurance industry would not have a significant impact on insurers or the efficient operation of insurance markets… Therefore, collection and use of existing genetic test results by insurance companies would not appear to be necessary for the legitimate business needs of the industry at the present time.”

Other research out of the United Kingdom has found similar results, said Bev Heim-Myers, CEO of the Huntington Society of Canada in Kitchener, Ont.

“When the insurance industry said everybody is going to run out and top up their life insurance policies to exorbitant amounts because they have access to that information… people didn’t. It’s not a good investment because (the testing) is predictive and... it could or could not be (right).”

For years, the insurance industry has had access to a lot of information, such as modifiable risk factors and family history, she said.

“They are desperate to hold on to this information, yet in other jurisdictions that have respected the rights of their own constituents and rights of individuals, and have not held onto this information, their communities are healthier, insurance premiums have gone down and people have been able to make informed decisions about their health moving forward.”

Human rights issues

A lot of the genetic carriers are linked to specific communities of people, said Jillian Friedman, a lawyer at Friedman Law in Montreal.

“For example, in the Ashkenazi Jewish community, there’s a much higher likelihood to carry genetic predispositions to different diseases or conditions, and that applies to other populations as well,” she said. “To think you might be prevented from (getting) insurance because you have that genetic marker… that just adds a whole other dimension, ethically too.”

Just because a person has a genetic trait or mutation doesn’t mean she’s going to get the disease, said Peter Engelmann, a partner at Goldblatt Partners in Ottawa.

“With some, it’s almost a certainty, but with most diseases, it’s only a possibility, so it’s an increased risk, and that’s one of the reasons why you don’t want to be stereotyped — just because there’s a higher chance of you contracting something doesn’t mean you’re going to.”

When it comes to human rights concerns, it’s also about employers using the information to avoid hiring individuals they believe are likely to have a high risk of absenteeism, take a stress or sick leave, resign or retire early for health reasons, file workers’ compensation claims, require workplace accommodation or excessively use health-care benefits, said Engelmann when he spoke in 2014 before the Standing Senate Committee on Human Rights looking at Bill S-201.

Employees may also be denied  promotions because of their results or be pressured to retire early, he said.

“People should not have to choose between undergoing diagnostic or prospective genetic testing and potentially facing repercussions in the workplace that lead them to having to prosecute a complaint or grievance.”

But there are already labour laws when it comes to discrimination around a handicap, said Friedman.

“You already can’t discriminate against somebody for having a handicap, so I don’t know that I would tuck genetic discrimination under the category of handicap, but it doesn’t really matter — I would just make it clear that this is not a factor on which a decision could be made about an employee.”

 A genetic characteristic may be considered a disability, said Jensen.

“A disability is a condition that inhibits or restricts a person’s ability to participate in the workplace. A condition may be latent or asymptomatic and the person only becomes aware of it upon receiving the results of genetic testing. This would not constitute a disability that would trigger an employer’s duty to accommodate,” she said.

“However, if an employer were to become aware of that person’s genetic (but unmanifested) characteristic and treated that person in a negative, differential manner based on the genetic characteristic, this would be considered discrimination on the basis of ‘perceived disability.’ Discrimination on the basis of a perceived disability is illegal in all jurisdictions in Canada.”

There’s also a lot of protection against genetic discrimination in labour laws and federal and provincial charters, said Friedman.

“The general principle is an employer isn’t allowed to ask a prospective employee any personal information that isn’t absolutely necessary for the job that they’re being hired for. So it’s difficult to imagine situations where somebody’s genetic predisposition to breast cancer, for example, would have anything to do with the tasks they’re going to be performing. So that’s something that was already in the law, although this would just serve to reinforce that genetic information is definitely not something you could ask about,” she said.

“I see (this legislation) more as clarifying and reinforcing protections that were already in the law, so it’s not a huge leap from where we were before.”

Some may say the new law isn’t needed because individuals can simply file a human rights complaint and claim discrimination on the basis of a perceived disability, or because there are existing privacy laws and requirements to keep health-care records confidential. But there are problems with that, said Engelmann.

“First of all, with privacy complaints, really there’s no hammer. The privacy commissioner finds a breach, and they make recommendations. And (secondly), on the human rights side… you have to prosecute these things on your own so if you’re filing a complaint with the federal human rights commission as an individual complainant, the commission will investigate the complaint but they don’t provide you with a lawyer anymore; the commission only gets involved if it’s a systemic complaint.”

Jensen — who also appeared before the standing committee in 2014 on behalf of the Canadian Association of Counsel to Employers — said her personal view on the issue has changed. 

“Public discussions about this issue, plus my experience with a close friend who has had genetic testing done, have helped me to appreciate just how vulnerable people who want or need to engage in genetic testing feel, once they have the results. Lawyers can reassure employees all they like that our human rights protections in Canada are robust enough to protect employees from any misguided employer who thinks they can discriminate against them on the basis of genetic test results, but that does not address the deep insecurity that an employee may feel who doesn’t see the words ‘no discrimination on the basis of genetic testing’ anywhere in our human rights laws.” 

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