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 both federal and provincial, and 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 traits, something over which the individual has no control, has serious consequences for individuals, families and society at large. Fear of such discrimination can deter an individual from making life decisions and choices, such as genetic testing and careers. 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, the research agenda can be limited as appropriate candidates cannot be identified. Fear of misuse prevents individuals from participating in clinical trials, which are needed to eradicate disease.
- Show leadership and sponsor initiatives to raise awareness of the issue in Canada and across the range of disease groups.
- 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), VIA:
- 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
Long term Goals
- To create effective 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.
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 and provincial government 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 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;
- Amend the Canadian Labour Code to eliminate genetic discrimination in the workplace.
The CCGF has been successful in working on a number of fronts:
- 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
- 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.