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 both both 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.
The Genetic Non-Discrimination Act was passed into law on May 4, 2017. We should all be very proud that our community members, in all provinces and territories, now have their genetic test information protected.
The Quebec government has now filed a reference with Quebec Court of Appeals. If the Quebec court rules against the GNA, the case will automatically go to the Supreme Court of Canada. We will continue to advocate for all Canadians through the Quebec appeals process.
For now, the GNA is law and the genetic test information of all Canadians is protected. We will continue to ensure the law is not overturned. Some clinicians from the HD Community are making it clear on patient files that genetic information is protected and not to be shared without explicit written consent of the patient. In your communities this may be a good suggestion to health care professionals.
- 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
- To influence legislation of effective comprehensive protection for all Canadians from genetic discrimination.
- 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 Breast Cancer Foundation
- 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
Policy Options for Change
There are many ways for a “made in Canada” solution, including the ones below, each one with different prospects of success and challenges, and “completeness” of coverage for the federal, provincial and territorial governments to approach genetic discrimination.
- Show leadership and sponsor initiatives to bring parties together to prevent genetic discrimination, in their respective areas of jurisdiction, re: life, mortgage, health and disability insurance;
- Enact or amend legislation to prevent genetic information from being used in employment decisions in areas of federal jurisdiction (e.g., Canadian Human Rights Act)
- Examine ways to strengthen and amend the Canadian Human Rights Act to protect citizens from discrimination based on the potential for future disability;
- Strengthen the Personal Information Protection Act to limit access to genetic information with respect to business transactions;
- Regulate genetic testing to prescribe their purposes and to ensure health, safety, accuracy and use of data, e.g., Food and Drug Act, Criminal Code;
- Control messaging by direct-to-consumer genetic testing companies accessing the Canadian market;
- Amend the Canadian Labour Code to eliminate genetic discrimination in the workplace.
The CCGF has been successful in working on a number of fronts:
- Passing the Genetic Non-Discrimination Act (GNA)
- 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 through 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.