The CCGF/CCEG is a coalition of organizations dedicated to preventing genetic discrimination for all Canadians. The Coalition is deeply concerned about discrimination against individuals based on their genetic make-up. We are united to educate Canadians about genetic discrimination and to influence governments at federal, provincial, and territorial levels, as well as other relevant organizations, to create change.
While genetic discrimination can occur in any environment or interaction, we have particular concern about discrimination in employment and insurance (i.e., life, critical care, disability, and mortgage). Being denied insurance on the basis of one’s genetic test information, something over which the individual has no control, has serious consequences for individuals, families and society at large. Fear of such discrimination can prevent an individual from making beneficial life decisions and choices, such as genetic testing, career choices and family considerations. For instance, an individual may not get genetic testing for fear of repercussions to their career or the loss of insurance, even though testing may be in the individual’s best interest. In addition to personal choice, clinical trials may be limited as appropriate candidates cannot be identified. Fear of misuse of genetic test information prevents individuals from participating in clinical trials, which are needed to understand, treat and eradicate disease.
To address genetic discrimination, the Genetic Non-Discrimination Act was passed into law on May 4, 2017. It was a significant step forward for Canadians, in all provinces and territories, to now have their genetic test information protected.
This historic law, which passed 3rd reading in the House of Commons by a vote of 222 to 60 in May 2017, enabled all people living in Canada the opportunity to make informed life decisions regarding health and reproduction, without fear of genetic discrimination. This legislation also enabled Canada to remain as a leader in genomic research and has already helped to alleviate the fears of Canadians, encouraging participation in genomics research and clinical trials. All Canadians deserve the right to proactively manage their own health and advance medicine without the fear of genetic discrimination. The Genetic Non-Discrimination Act alleviated that fear and removed barriers, by protecting genetic test information.
In late December, 2018 the Quebec Court of Appeal gave its opinion that the Genetic Non-Discrimination Act (GNA) does not constitute a valid exercise of Parliament’s criminal law power. The Quebec opinion is a step backwards at a time when we should be increasing the protection of our genetic information at federal, provincial and territorial levels. Genetic discrimination is an important issue in Canada and a barrier to science, medicine and the health and well being of people living in Canada. The Genetic Non-Discrimination Act addresses this problem and protects the genetic test information for the benefit of all Canadians. It is important to note that the Quebec Court of Appeal just provided an advisory opinion on the specific questions referred to them, however, this opinion does put the Genetic Non-Discrimination Act at risk. The CCGF is exploring all options as we move forward with our lawyers.
- Show leadership and sponsor initiatives to raise awareness of the issue in Canada understanding that all Canadians are at-risk.
- Explore policy options aimed at mitigating/preventing/prohibiting the use of genetic information in assessments and decisions related to employment and insurance (life, disability, critical illness, mortgage, extended-health), by way of:
- Conferring with experts
- Environmental scan of international approaches
- Explore types of genetic discrimination, e.g., the areas of life where discrimination takes place (employment, insurance, licensing, adoption, custody and access, in courts, blood banks, Canadian Armed Forces)
- Secure government relations advice for action plan
- Identify PMO contacts and related departments as well as other provincial and/or regional representatives
- Influence federal politicians and bureaucrats to create change
- Ensure GNA stays as law and is not overturned
- To ensure federal legislation stays intact and influence provincial legislation of effective comprehensive protection for all Canadians from genetic discrimination through implementation of provincial protections
- To create a public education program to promote protections from genetic discrimination with the goal of eliminating discrimination fears, while also increasing genetic testing and research in Canada.
- To establish a permanent group to oversee protections, document genetic discrimination cases and measure the effectiveness of the protections.
- Alpha-1 Canada
- ALS Society of Canada
- Alzheimer Society of Canada
- Canadian Cancer Society
- Canadian Congenital Heart Alliance
- Canadian Cystic Fibrosis Foundation
- Canadian Organization of Rare Disorders
- Canadian PKU & Allied Disorders
- Centre for Israel and Jewish Affairs
- Foundation Fighting Blindness
- Huntington Society of Canada
- Kidney Foundation of Canada
- Multiple Sclerosis Society of Canada
- Muscular Dystrophy Canada
- NF Ontario
- Osteoporosis Canada
- Ovarian Cancer Canada
- Parkinson Society of Canada
- Spina Bifida & Hydrocephalus Association of Canada
- Tourette Syndrome Foundation
The CCGF has been successful in working on a number of fronts:
- Passing the Genetic Non-Discrimination Act (GNA) – May 2017
- Building the coalition
- Linking with experts
- Briefing of Government of Canada Officials
- Prime Minister’s Office
- Office of the Leader of the Opposition
- Office of the Privacy Commissioner
- Justice, Health, Industry
Our Next Steps
- Continue advocating for all Canadians following the Quebec appeals process to ensure the GNA remains law
- Garner more support from a wider audience
- Educate stakeholders on the impact of genetic discrimination in Canada
- Build support with local Members of Parliament
- Develop a comprehensive internal and external communications strategy.
- Continued identification of legislative and regulatory vehicles.
- Seek other organizations to become coalition members.
- Work with the scientific and medical community to end genetic discrimination in Canada.