Genetics

Portions of Canada’s Genetic Non-Discrimination Act declared unconstitutional

Back in August 2018, I wrote post titled “Genetic discrimination laws: Where is Canada?“. In the post, I noted that Canada’s Genetic Non-Discrimination Act was being challenged by Quebec in a reference to the Quebec Court of Appeal. The Province of Quebec argued that this legislation overstepped Parliament’ constitutional authority.

The decision came out in December 2018 with little fanfare. The conclusion of the Quebec Court of Appeal was that sections 1 to 7 of the legislation are unconstitutional. Section 8, which amends the Canada Labour Code, and section 9 and 10, which amend the Canadian Human Rights Act, are not affected by the ruling. These provisions prevent non-discrimination with respect to matters coming within the legislative authority of Parliament (as opposed to the province).

Sections 1 to 7 of the Genetic Non-Discrmination Act attempted to criminalize certain activities, such as requiring an individual to take a genetic test as a condition of providing goods or services or of entering into or mainiting a contract. The legislation was, among other things, an indirect attempt to prohibit insurance companies from requiring genetic tests as part of their assessment of insurability.

The Quebec Court of Appeal concluded that sections 1 to 7 were not actually aimed at preventing discrimination. Instead, these provisions criminalized “access to information obtained through genetic testing, without forbidding the use of genetic information that may be disclosed voluntary or that may be required or obtained through other means, such as family history or medical tests of another nature.” In the Quebec Court of Appeal’s view, this was not a valid exercise of federal jurisdiction.

The Canadian Coalition for Genetic Fairness issued a press release on January 16, 2019, expressing its disappointment with the decision.

Update (2019-02-16): The Canadian Coalition for Genetic Fairness, which was an intervenor in the Quebec case has appealed to the Supreme Court of Canada. Leave to appeal was not required.

Comparative study on approaches to genetic discrimination laws

In an article for the International Association of Privacy Professionals in 2016, titled “How Canada compares to the UK and US on genetic discrimination“, I compared Canada’s approach to genetic discrimination with that of the UK and the US. My conclusion was:

The US leapt in early with the Genetic Information Non-Discrimination Act (GINA) to protect individuals with respect to health insurance and employment. The focus on health inurance was undertandable because of the number of Americans who do not have access to funded healthcare. However GINA left untouched all types of insurance other than health insurance. GINA also draws a bright line in the employment context. The need to do so in the U.S. is understandable perhaps given the absence of strong privacy laws for employees.

The U.K. approach relies on privacy laws and an agreement with the insurance industry that is both evidence-based and risk-based. An
insurer is permitted to seek “diagnostic” genetic test results. However, insurers may not demand predictive genetic tests (which are correlated with risks of developing a disease or disorder rather than diagnosing a disease or disorder) , and individuals who have taken such tests are not required to disclose the results. There is an important exception. Insurers can ask for highly predictive test results, such as for Huntington’s disease, for high-value life insurance policies (GBP 500,000 or more).

Canada chose to pursue a different path with provisions of the Genetic Non-Discrmination Act (now declared to be unconstitutional – see above).
The Act was not evidence-based and risk-based. Instead, it was a blunt law that seemed to be based on the belief that genetic information is deeply private and that the use of that information (even if it were scientifically valid) by insurers or employers is unfair given that it is an immutable characteristic.

With the Genetic Non-Discrimination Act out of the way, there is an opportunity to have an evidence-based policy discussion and the development of a more nuanced risk-based approach.

Ontario Bill 40, Human Rights Code Amendment Act (Genetic Characteristics)

Protecting Canadians from discrimination based on genetic characteristics seems to be a topic reserved for private member bills. This time, Christina Mitas, Ontario Progressive Conservative MPP, has introduced Bill 40, Human Rights Code Amendment Act (Genetic Characteristics), 2018.

The Bill would prohibit discrimination based on genetic characteristics when seeking services, good and facilities, accommodation, employment and membership in various organizations.

However, unlike the federal Genetic Non-Discrimination Act, SC 2017, c 3, the Ontario amendments would permit insurers to  differentiate or to make a distinction, exclusion or preference on reasonable and bona fide grounds because of genetic characteristics. Importantly, employee benefits programs would be excluded, meaning insurers could not deny or exclude coverage in employee benefits programs.

If passed, Bill 40 would be in direct conflict with federal legislation, setting up the possibility of a constitutional challenge.

Update 2019-01-19 Bill 40 had second reading on October 18, 2018 and is before the Standing Committee on the Legislative Assembly. The Bill seemingly had bi-partisan support by Conservatives and the NDP.

From medical paternalism to engagement

The Alzheimer’s Foundation of America has warned of medical paternalism in a September 27, 2018 editorial comment in the Journal of Alzheimer’s Disease. Discussing the availability of at-home genetic tests that include screening for an individual’s APOE status (a gene that is correlated with susceptibility to late-onset Alzheimer’s disease, the authors recall previous debates over sharing medical information with individuals. The authors cite the examples of debates about sharing cancer diagnoses in the 1960s, HIV infection status in the 1990s and, more recently, the availability of direct-to-consumer genetic testing for Huntington’s disease. Of course, the examples of cancer and HIV involve disclosure of information relating to a manifest condition, whereas, in the case of Huntington’s, the condition may not yet be manifest and, in the case of APOE status, the information relates to risk rather than to a certainty.

The AFA acknowledges that “the patient role is now understood as appropriately primary and autonomous”. So the issue is not whether consumers should receive this information, but how to optimize the individual and societal benefits. The AFA outline three worthy goals:

  • Educate consumers on the meaning of genetic tests, including other genetic factors
  • Mitigate the negative consequences for people learning information about themselves (e.g. discrimination)
  • Capitalize on the testing by using information at the individual-level and population-level to inform strategies to lower the overall risk

The AFA suggests that “developing and standardizing systems for information and resource management across the industry should start now, with the input of consumers and experts in genetic risk and health information disclosure.”

Read “Genetic “Risk of Alzheimer’s Disease: Three Wishes Now that the Genie is Out of the Bottle“.

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