The decision to pursue genetic testing is a highly personal one. There are many reasons why an individual may choose to, or choose not to, have genetic testing. Thanks to the new Genetic Non-Discrimination Act (GNA), Canadians are now able to make this personal decision without fear of the potential implications for insurance and employment discrimination. This removes a major barrier to the appropriate use of genetic and genomic services by the public, and is a huge step forward for patients, families and the field of genetic medicine in Canada. Last year we wrote about Bill S-201: An Act to prohibit and prevent genetic discrimination. On May 4, this Act received Royal Assent and is now law.
The Canadian Association of Genetic Counsellors (CAGC) has published a fact sheet about the GNA and what it means for patients and providers.
The GNA protects individuals from the use of genetic test results in areas outside of medical care and medical research, such as insurance and employment. This law makes it illegal for an insurer to require a person to undergo genetic testing, or to disclose the results of previous genetic tests, as a condition of the insurer’s providing or continuing coverage.
The passage of this law is the culmination of years of dedicated work by patient advocates, politicians and the medical community. Until now, Canada lagged behind all other G7 countries, which have had similar legislation in place for several years.
In this day and age, privacy is paramount as elucidated by Daniel Therrien, Privacy Commissioner of Canada: “In a time of unprecedented demand for personal data, this new law adopted by Parliament is a critically important development for privacy protection.”
The timing is also significant for the research and development industry, as the pace of genomic discoveries and technologies continues to pick up speed. Many believe this new law will help to ensure that Canada remains a leader in the area of genetics and genomics, putting us at the forefront of individualized medicine.
The new legislation overrides the longstanding Industry Code on Genetic Testing Information for Insurance Underwriting. Most Canadian insurers should immediately adjust their practices in accordance with the new law, including not discussing genetic tests with clients or document results of genetic tests. Even if the client provides genetic test information unasked, the insurer should not take it into consideration since the passing of the new legislation on May 4.
There have been reports on the Minister of Justice’s intention to refer Bill S-201 to the Supreme Court for an opinion on its constitutionality. However, to date, no steps have been taken to present this to the Supreme Court. Should the reference to the Supreme Court proceed, it may have implications for insurance business processes and the need to otherwise comply with the new legislation.
As part of the Medcan genetic counselling team, I have seen the life-changing power of preventive genomic testing, whether it is related to hereditary cancer, cardiovascular health, Alzheimer’s disease or medication sensitivities. With this new law, we are happy that future conversations can focus on medical and emotional aspects of the testing, without fear of non-medical repercussions.