Protecting Me and My 23: The Medico-Legal Issues of Genetic Privacy in Canada

Genetic information and how we use it is already changing in our world. Advancements in medical research have shifted our ability to understand why our health matters, what information we can collect about our bodies and what steps we should take to ensure healthier lifestyles for both ourselves and our families. Indeed, it is further expected that changes yet unimagined will emerge as genetic science is applied to more aspects of our daily lives (Walker, 2014).

Canada is no exception to these changes, as a recent vote in the House of Commons passed a bill which outlaws genetic discrimination. Bill S-201, otherwise known as the Genetic Non-Discrimination Act, prohibits anyone from requiring a person to undergo or disclose the results of a genetic test as a condition of employment or before selling that person a good or service, such as disability or life insurance (Adhopia, 2017). Originally introduced in 2013 by now-retired Liberal Senator James Cowan, the bill would effectively bar discrimination on the basis of genetics, as well as the sharing of genetics tests without written consent (with specific exemptions for researchers and medical practitioners). The maximum punishment for breaking the law is a fine of $1,000,000 and/or imprisonment for five years.

Supporters of the Genetic Non-Discrimination Act, such as medical research corporations like 23AndMe, say that the law is needed to encourage Canadians to make greater use of genetic testing. Genetic testing, which involves the analysis of a person’s 23 chromosomes, genes or proteins to identify the presence of specific traits, can have many benefits, such as diagnosing genetic conditions or identifying a person’s predisposition to a genetic disease. Realistically speaking, every person has dozens of genetic mutations that could increase or decrease his or her chance of getting a disease such as cancer, heart disease, diabetes, Alzheimer’s or Parkinson’s disease (c.f. CCGF, n.d.). Genetic information gathered can help people initiate appropriate treatment early and adopt lifestyles that minimize their chances or possible harm from a genetic condition. In fact, genetic testing also allows people to learn about their ancestral origins and parentage and is helping scientists to map prehistorical routes of human migration (Walker, 2017).

This curiosity in our bodies, health and well-being has also been developing within the private sector. With society’s growing interest in our genetic personal information increasing, it comes as no surprise then that the number of tests which have become available to the public over the Internet has significantly increased as well (Office of the Privacy Commissioner of Canada, 2017). Such increases are coupled with a greater development in the quality for certain tests to assess genetic abnormalities through whole genome testing rather than simple tests which assess singular genes (Adhopia, 2017).

However, genetic information can be used to discriminate against someone, and it clear from the existing legal and regulatory frameworks in place in Canada that Canadians should remain concerned for our genetic privacy. Typically, Section 15 of the Canadian Charter of Rights and Freedoms guarantees equality and grants each person the protection to not be subjected to discrimination. Yet at present it can only be speculated how Canadian courts might treat a case involving genetic discrimination, since there has yet to be a court or tribunal case which has directly answered the question of whether ‘genetic characteristics’ fall within and constitute a prohibited legal ground of discrimination (Walker, 2014). And while the federal Personal Information Protection and Electronic Documents Act (PIPEDA) governs the handling of personal information in the private sector, PIPEDA does not apply uniformly across Canada. Some pieces of provincial legislation replace PIPEDA while others work in tandem with PIPEDA (Walker, 2014). To make matters worse, PIPEDA does not even include a definition of what it constitutes as ‘genetic information,’ nor any guidance on how genetic information should be handled.

Canadians have the right to know that their genetic privacy is maintained, yet unfortunately most privacy laws in the country were passed before widespread genetic testing capacities had been developed, and therefore do not contain specific language about genetic information (Walker, 2017). In effect, many Canadians continue to refuse genetic testing in the course of medical care or clinical trials because of the ongoing fear that health and life insurers could use the results against them (Kondro, 2017).

The protection of a person’s genetic information has become increasingly urgent within the last decade. Taken together, we see how laws which secure and protect genetic privacy must be advanced in Canada. Although the long-term legal and ethical consequences of genetic testing for insurance contracts, employment matters, and preventative treatment and medicine are not fully known, the concern of genetic privacy and discrimination should remain paramount. It is unfair and unjust to use genetic information to determine which individuals will be insured or employed, and to assume that one’s DNA will inevitably result in a disorder or disease - the probabilities could be faulty, misleading, and perhaps speculative at best. As genetic testing becomes more commonplace, it is critical that Canada upholds laws which protects genetic test information for the benefit of all Canadians.

References:

Adhopia, V. (2017). “Genetic anti-discrimination law protects patient privacy without sacrificing research.” CBC News. March 10. Available at: http://www.cbc.ca/news/health/genetic-discrimination-patients-1.4018332.

Canadian Coalition for Genetic Fairness (CCFG) (n.d.). “About Genetic Discrimination.” CCFG. Available at: http://ccgf-cceg.ca/en/about-genetic-discrimination/.

Kondro, W. (2017). “Canada’s new genetic privacy law is causing huge headaches for Justin Trudeau.” American Association for the Advancement of Science. March 10. Available at: http://www.sciencemag.org/news/2017/03/canada-s-new-genetic-privacy-law-causing-huge-headaches-justin-trudeau.

Office of the Privacy Commissioner of Canada (2017). “Direct-to-Consumer Genetic Testing and Privacy.” Office of the Privacy Commissioner of Canada. February 16. Available at: https://www.priv.gc.ca/en/privacy-topics/health-genetic-and-other-body-information/02_05_d_69_gen/.

Walker, J. (2014). “Genetic Discrimination and Canadian Law.” Library of Parliament, Ottawa: Legal and Social Affairs Division. Pp. 1-10.

23AndMe (n.d.). “Genetic Discrimination in Canada.” 23AndMe, Inc. Available at: http://mediacenter.23andme.com/en-ca/genetic-discrimination-in-canada/.