Huntington Society of Canada Spring 2018 Horizon Article

Genetic Non-Discrimination Act (GNA) Update

By Julie Stauffer as written in the Spring 2018 issue of Horizon

For now, the Genetic Non-Discrimination Act (GNA) remains law and your genetic test information is protected. It is a criminal offence for a service provider or anyone entering into a contract with you to require or compel you to take a genetic test or to provide your results of a genetic test. The GNA also makes it a criminal offence for a service provider or anyone entering into a contract with you to collect, use or disclose your genetic test results without your explicit written consent. Service providers or parties entering into a contract with you, include but are not limited to, insurance providers, landlords, adoption agencies, employers, schools and more. The act sets out a maximum penalty of a fine of $1 million or possible imprisonment up to 5 years.

The Quebec Government referred the GNA to the Quebec Court of Appeals and they are challenging the constitutionality of the legislation. There are others that support Quebec’s position including the Attorney General of Canada, Attorney General of BC and the Canadian Life and Health Insurance Association (CLHIA). The Canadian Coalition for Genetic Fairness (CCGF) and the Canadian Human Rights Commission have been given intervenor status to support the GNA, and the Chief Justice of Quebec has also appointed an amicus (impartial advisor) to support the legislation. We will continue to fight for the GNA during the Quebec appeal and (if necessary) the Supreme Court of Canada. Timing for the oral arguments at the Quebec Court of Appeal will be determined in the fall of 2018.

What does this mean for you? At this point in time, the GNA remains law and your genetic test information is protected by the prohibitions stated above.

This historic law is a huge step forward and will enable all people living in Canada the opportunity to make informed life decisions regarding health and reproduction, without fear of genetic discrimination. This legislation also enables Canada to remain as a leader in genomic research. The HD community played a significant role in moving this mountain forward. We are doing everything we can, working with several incredibly dedicated
stakeholders, to ensure the genetic test information for all people in Canada continues to have comprehensive protection provided by the GNA.


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