Bill S-201: The Beginning of the End to Genetic Discrimination in Canada
Genetic testing is taking the healthcare and biotechnology sectors by storm. At the end of 2014, there were over 24,000 tests for upwards of 5,000 genetic conditions registered with the National Institutes of Health and, today, these values have nearly doubled.1,2 In healthcare, genetic testing is used in the diagnosis or prognosis of certain conditions. It can also be used to identify the risk of developing disease, such as in predictive testing. Although genetic testing has clear benefits for managing the health of patients and the general population alike, Canadians are concerned.
There is fear of genetic discrimination and that genetic testing may jeopardize one’s employment or their ability to obtain affordable health and life insurance. In a privacy survey prepared for the Office of the Privacy Commissioner of Canada, 52% of respondents reported that they would be very concerned that they might be asked to provide test results for non-health-related purposes, such as insurance or employment.3 This becomes especially problematic in cases in which genetic testing could help a patient. Testing can grant individuals the chance to make lifestyle changes to reduce their risk of developing conditions that they may be predisposed to such as heart disease or cancer. These changes could be as simple as taking part in more cardiovascular exercise or as drastic as undergoing a double mastectomy. Genetic testing could be instrumental in the medical treatment of a pre-existing disease. While Canada does have laws in place which act to minimize discrimination in insurance, in addition to privacy laws for the protection of personal health information, there are no laws explicitly addressing genetic discrimination – or at least, not yet.
Insurance companies set premiums through a process termed underwriting. The probability of an adverse event happening, such as disease, is used to assess the risk of each individual and to set premiums, accordingly. Insurers argue that individuals with a positive genetic test should be paying a larger premium than the average individual to offset the company’s increased potential for paying a claim. In reality, genetic testing results and family history are not sufficient for accurately setting premiums; there are much greater factors at play in determining these rates.4,5 In addition, negative genetic testing results do not make a person perfectly healthy or low-risk. An individual with a so-called “perfect” genetic profile could be afflicted with other illness, such as an infection or accident, or they could be making poor health decisions. Furthermore, monogenic late-onset diseases often tested for with predictive genetic testing occur so rarely that, in a reasonably-sized insurance market, the cost to insurers due to adverse selection is minimal.4,5 Without government regulations in Canada, life and health insurers currently do not require applicants to undergo genetic testing for insurance; however, they do require the results from a genetic test to be disclosed where they exist.6,7
Several international cases involving genetic discrimination have garnered media attention, further underlining the prevalence of this issue globally. In Germany, there was a court case in which a woman was refused a permanent teaching job because her father had Huntington’s and she had refused a genetic test. Her employer claimed that she might have a higher rate of absenteeism and incur more medical costs, even though she did not display any symptoms of the disease. The court ruled in her favour and ruled that she should be entitled to a lifelong job.8,9 In the U.S., the Equal Employment Opportunity Commission filed a suit against a railroad company for testing its employees for a rare genetic condition, hereditary neuropathy with liability to pressure palsies (HNPP) without their consent.10 The company reasoned that they were testing their employees to determine if carpal tunnel syndrome in its employees was due to HNPP or repetitive-stress work injuries. Doctors involved were also instructed to screen for diabetes and alcoholism in the workers. The Toronto Star published a story in 2009 about a breakthrough study which followed a group of asymptomatic Canadians with a family history of Huntington’s disease. Genetic discrimination was reported in almost 40% of individuals sampled, which was strongly associated with psychological distress.11 About one in three individuals reported insurance discrimination in the form of rejection, premium increases, or requests to take a predictive test based on their family history.11 Canadians deserve the right to not only have their personal genetic information kept private, but also for this legislation to protect them from discrimination in employment, insurance, education, and criminal law.
This past year, the Canadian Senate passed Bill S-201: The Genetic Non-Discrimination Act, a policy which will provide protection to Canadians with respect to genetic testing and test results.12 First and foremost, this Act will protect an individual’s right to refuse to take a genetic test or disclosing the results from a genetic test. For example, under Bill S-201, employers will be prohibited from asking its employees to undergo genetic testing or to disclose the results of a previous genetic test. Employees can take action against an employer if they feel that they have been wrongfully treated based on genetic testing they have undertaken. In addition, this act includes an amendment to the Canadian Human Rights Act to include genetic characteristics as a prohibited ground of discrimination.12
Although Bill S-201 is a step in the right direction, it is still in its infancy. This Act passed during its first reading in October and will now move on to its second reading and will be referred to the Standing Committee. Without this legislation, Canadians will be forced to choose between their privacy and their health. Insurance companies will continue to use family histories and genetic test results to unjustly raise premiums. Employers will be able to penalize workers based on their genetic predispositions. If this bill does not go on to become law, Canada will remain the only G7 country that does not have legislation to prevent genetic discrimination.
1. Walker J. Genetic Discrimination and Canadian Law. Ottawa Library of Parliament; 2014. 2014-90-E.
2. GTR: Genetic Testing Registry [database online]. 2016. https://www.ncbi.nlm.nih.gov/gtr/.
3. Survey of Canadians on privacy-related issues. Ottawa: Office of the Privacy Commissioner of Canada. Phoenix Strategic Perspective Inc; 2013.
4. Macdonald A. The Actuarial Relevance of Genetic Information in the Life and Health Insurance Context. Office of the Privacy Commissioner of Canada 2011.
5. MacDonald A, Yu F. The Impact of Genetic Information on the Insurance Industry: Conclusions from the ‘Bottom-Up’ Modelling Programme. Astin Bulletin 2011;41(2):343-376.
6. CLHIA Position Statement on Genetic Testing. Canadian Life and Health Insurance Association Inc; 2010.
7. Statement on Genetic Testing and Insurance. Canadian Institute of Actuaries 2014.
8. Mechan-Schmidt F. Teacher protests at gene bias Times Educational Supplement 2003.
9. Burgermeister J. Teacher was refused job because relatives had Huntington's disease. Brit Med J. 2003;327(827a).
10. Cases of Genetic Discrimination. National Human Genome Research Institute. Published 2012. https://www.genome.gov/12513976/cases-of-genetic-discrimination/.
11. Bombard Y, Veenstra G, Friedman JM, et al. Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey. BMJ. 2009;338:b2175.
12. Bill S-201: An Act to prohibit and prevent genetic discrimination. Senate of Canada. 2016.
Cite This Article:
Peacock E., Zheng K., Chan G., Ho J. Bill S-201: The Beginning of the End to Genetic Discrimination in Canada. Illustrated by H. Zhang. Rare Disease Review. January 2017. DOI:10.13140/RG.2.2.36747.28964.