General Info

In 2011 CCGF Supported Bill 199: MPP Mike Colle's Human Rights Code Amendment Act, 2011, to help fight against genetic discrimination. This Bill would have amended Ontario’s Human Rights Code to include “genetic characteristics” as a prohibited ground of discrimination. Talk to your local MP and MPP and join CCGF/CCEG to raise awareness of genetic discrimination so that all Canadians are treated fairly and not discriminated against because of their DNA. CCGF Goals: Our Actions: 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: -Research -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. Our Members: ALS Society of Canada Alzheimer Society of Canada Cystic Fibrosis Canada Centre for Molecular Medicine, UBC CORD (Canadian Organization for Rare Disorders) Foundation Fighting Blindness Huntington Society of Canada Kidney Foundation Muscular Dystrophy Canada NF Canada Ovarian Cancer Canada Osteoporosis Canada Parkinson Society of Canada Spina Bifida and Hydrocephalus Association of Canada Tourette Syndrome Foundation of Canada 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. Coalition Achievements: 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.