The following post was written by Kerry Solomon.
Kerry Solomon is a Graduate Research Fellow at the Centre for International Governance Innovation and a Master of International Public Policy Candidate at the Balsillie School of International Affairs 2016-2017. Her research interests include equity and global health.
Canada has protection from discrimination based on one’s race, religion, and sexual orientation; however, it may come as a surprise to some that genetics is not one of those grounds. In fact, Canada is the only G7 country that does not already have laws in place to protect its inhabitants from genetic discrimination. On a personal note, as someone of Ashkenazi Jewish heritage, I am at increased risk compared to the general population to have an inherited mutation in the genes BRCA1 and BRCA2. This means that that if I carry this mutation, I am at a much greater likelihood of developing breast or ovarian cancer. Does this leave me vulnerable to discrimination based on my genetics?
New DNA sequencing technologies mean that we can now test if a person carries a genetic risk of developing a particular disorder. These tests are more widely available and at a less prohibitive cost than even a few years ago. Genetic testing has many important benefits for health care, including improving diagnosis and therefore treatment of diseases, especially inherited diseases like Parkinson’s or Huntington’s. There is great potential for this technology, but if there is not proper protection around genetic data, people will be wary about seeking potentially life-saving information. A recent story emerged of where a 24-year-old Canadian man received confirmation that he carried the gene for Huntington’s disease, and upon notifying his employer, was fired. Further, if a person obtains a genetic test and withholds knowledge of their genetic history, their insurance company may cancel their coverage upon learning this.
European countries and the United States are already using genome sequencing as part of their medical care, but these countries also have anti-discrimination laws in place to protect patients from discrimination based on genetic heritage. So what is Canada doing to catch up with other countries on this issue?
Bill S-201, the Genetic Discrimination Act: An Act to prohibit and prevent genetic discrimination was passed on October 26, 2016. This Act will prohibit insurance companies from requiring an individual to undergo a genetic test or from forcing an individual to disclose the results of a genetic test as one of the conditions for receiving insurance coverage. The Canadian Coalition for Genetic Fairness has advocated for Bill S-201 to go even further.
In order for protection from genetic discrimination to be implemented in Canada, not only will the Canadian Human Rights Act need to be updated to include genetic discrimination, but also the Personal Information Protection Act and the Canadian Labour Code will need to be modernized to address genetic characteristics. Though this Bill received unanimous support from the Senate, it is not without its critics in the insurance industry.
Insurance companies are opposed to the Bill, claiming that requiring genetic testing is akin to asking for family history. Based on this information, insurance providers can either refuse coverage based on a specific genetic test, or charge much higher rates. The Canadian Institute for Actuaries, arguing on behalf of the insurance companies, believes that this Act gives an unfair advantage to those who have a genetic predisposition for a certain disease. They argue that someone who tests positive for a certain gene would purchase more insurance, knowing they are at greater risk, at premiums that would be below cost. The argument then follows that this would raise everyone’s insurance premiums, to the detriment of all Canadians.
In an attempt to self-regulate and pre-empt the changes required once Bill S-201 is passed, the Canadian Life and Health Insurance Association indicated that they will soon prevent insurers from requiring genetic tests results for policies that are $250,000 or less. This internal policy will go into effect in 2018 but does not fully address the discriminatory element of this issue, as discrimination is still allowed in policies above this cut-off. This does not (and should not) act a substitution for industry changes that will be required by the final legislation.
This has ramifications that go beyond insurance; without protection from genetic discrimination, we could see this affecting employee rights as an employer may choose to not hire a candidate based on their genetic information. There are other spill-over effects for scientific research because if people are confident their results could not be used against them, they may be more inclined to have genetic testing – an outcome with unequivocal benefits to public health. Finding out that you are genetically disposed to a condition that decreases life expectancy is bad enough without having to worry about whether you can afford, or even get, life insurance.
Given the current environment, I have not participated in genetic testing for mutations in BRCA1/2. Without the knowledge of my mutation status, I do not know whether I need to make any lifestyle changes or other preventive steps such as a mastectomy.
Genetic discrimination could affect all Canadians, and we need to be more progressive and keep up with the evolving technology if we want to encourage genetic testing to improve long-term health. As we enter this brave new world of genetic knowledge, we want to avoid a dystopia where our genes determine our future.
Brandt-Rauf, Sherry I. Victoria H. Raveis et al. “Ashkenazi Jews and Breast Cancer: The Consequences of Linking Ethnic Identity to Genetic Disease.” American Journal of Public Health 2006 November Vol. 96(11): 1979-1988.
Canadian Institute of Actuaries “Canadian Institute of Actuaries’ Proposed Amendment to Bill S-201, An Act to prohibit and prevent genetic discrimination.” November 21, 2016
Gold, Kerry “How genetic testing can be used against you – and how Bill S-201 could change that.” The Globe and Mail. April 3, 2016
Mcquigge, Michelle. “Insurers trying to self-regulate on genetic testing.” Chronicle – Herald; Halifax, N.S. January 12, 2017
Walker, Julian “Genetic Discrimination and Canadian Law” Library of Parliament September 16, 2014