A Blog from our CEO – Bev Heim-Myers
February 4, 2016
Less than 13 years ago there were 100 genetic tests. Today there are more than 32,000.
While science has led the way to better prevention and treatment of disease, lack of similar progress in protecting genetic information is a barrier to the well-being of all Canadians.
Canada is the only G7 country that does not protect genetic information, with no legislation to prevent the unwanted use of genetic information. Other countries, including Israel, have implemented genetic information protection measures. In Canada, science and technology have outperformed legislation, and it is time to change that.
In Canada we allow businesses, including the insurance industry and employers, to have access to our genetic information in addition to our family medical history. They can then use genetic information against us to deny insurance or employment. Genetic information is complicated, personal and, frankly, not that predictable. Genome sequencing and genetic testing may indicate the potential for a future disability but, in many cases, it is probative and individuals are therefore discriminated against based on the perception of a future disability.
In Canada we allow a young professional to be fired from a job because an employer discovered he or she tested positive for a genetic mutation – even one that will not manifest for 20+ years. A young, healthy man with a young family can be denied life insurance because his grandmother died of ALS, even if his parents and his siblings show no signs of the disease and have outlived the grandmother. Young parents are rejecting genetic tests that could determine treatment for their baby for fear of genetic discrimination toward the entire family. A young woman graduating as a chiropractor cannot get the life insurance needed to open her practice because Huntington disease is in her family. Young women and men with the BRCA gene in their family are afraid to be tested lest results engender discrimination against themselves and their daughters.
In December 2015, Senator James Cowan re-tabled Bill S201, a bill to prohibit and prevent genetic discrimination. On January 27, this Genetic Non-Discrimination Bill passed second reading and was referred to the Senate Standing Committee on Human Rights. Bill S201 is written to address the gaps in our laws that prevent individuals from leveraging medical and scientific advances leading to early prevention, treatment and diagnosis of disease. There are many parts to Bill S201 including: a new genetic non-discrimination act, amendments to the Canada Labour Code, amendments to the Canadian Human Rights Act, and amendments to the Privacy Act and PIPEDA.
Bill S201 proposes comprehensive legal protection of genetic information and will act as a deterrent to the discrimination based on genetic testing. The responsibility will no longer be shouldered only by the affected individual, using existing, vague privacy laws, to prove genetic discrimination.
The time is past due for our legislators and decision-makers to protect genetic information in Canada. You can help move this forward by letting the Senators and your MP know that you support Bill S201. Also let your MPP know that genetic information protection is important to you.
Protecting your DNA is important because no one has perfect genes.
Bev Heim-Myers 
CEO, Huntington Society of Canada
Chair, Canadian Coalition for Genetic Fairness (CCGF)
See the article originally published for The Exchange here.