Today, Monday, November 4th, 2013, Mike Colle, MPP for the riding of Eglinton-Lawrence, will re-introduce a Private Member’s Bill, the Human Rights Code Amendment Act (Genetic Characteristics), 2013, that, if passed, would amend Ontario’s Human Rights Code to include "genetic characteristics" as prohibited grounds for discrimination.
Over the past decade, genetic testing for many disorders and diseases has been on the rise. Genetic information is sometimes used to determine eligibility for insurance and employment. A recent University of British Columbia Study showed that insurance companies are discriminating against individuals with a family history of Huntington’s disease. This included the denial of insurance and very high premiums.
"Everyone deserves to be treated fairly and to live their best life. Ontario requires a genetic non-discrimination strategy to ensure that genetic information is used properly without fear of exclusion from being eligible for insurance and or employment. Genetic information is private and personal information that should only be used as an individual chooses. We are very supportive of the Private Members Bill to amend the Human Rights Code and end genetic discrimination in Ontario." -Bev Heim-Myers, on Behalf of the Canadian Coalition for Genetic Fairness
"While advances in genomic medicine have led to an explosive growth in our knowledge of the human genome, there is a critical need for advances in provincial policy to align with this new genomic knowledge. Acceptance of the Private Members Bill to amend the Human Rights Code and genetic discrimination in Ontario will be the catalyst to ensure health outcomes for children & families are positively altered through a non-discriminatory environment. Ontario needs to be a leader in advancing efforts to support fairness and non-discrimination of genetic information." - Dr. Ronald Cohn, the Hospital for Sick Children
"With the explosion in the number of genetic tests becoming available across the globe, it is imperative that we enact legislation that will protect Ontarians from being discriminated against on something they have no control over, their DNA."- Mike Colle, MPP Eglinton-Lawrence
OTHER CURRENT LEGISLATION
- In Canada, Bill S-201, An Act to Prohibit and Prevent Genetic Discrimination, has been introduced federally. If Bill S-218 is passed, legislation at a provincial level would still be required to ensure all Ontarians are protected against genetic discrimination.
- The United Nations’ Universal Declaration on the Human Genome and Human Rights states that, "No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity" (Article 6)
- In the United States of America, the Genetic Information Nondiscrimination Act of 2008 (GINA) was enacted on May 21, 2008
- Across the globe, countries (including Germany, France, Austria, Spain, Belgium, Denmark, Finland, Norway, Sweden, and the Netherlands) have prohibited or restricted the use of genetic information for insurance purposes.
WHY PROTECTING ONTARIANS FROM GENETIC DISCRIMINATION IS SO IMPORTANT
- We all have some form of genetic anomaly that puts us at risk of being discriminated against based on our genetic characteristics. We may have genetic characteristics that put us at risk of increasing our chance of getting heart disease, diabetes, or cancer, however it does not conclusively mean we will exhibit symptoms or even get these diseases or disorders.
- Fear of genetic discrimination can cause individuals to avoid genetic testing. This would prevent them from obtaining necessary treatment that if provided early enough, can help treat any disease or disorder they may have, or potentially have. This can also deter individuals from participating in genetic studies that may be helpful in finding new treatments or cures for existing diseases or disorders, thus preventing biomedical research from advancing.
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