“We need to address the privacy, ethical, health and economic issues surrounding genetic information to put safeguards in place. Legislation in this area is imperative and the neurological community asks the Government of Canada to enact legislation to protect Canadians from genetic discrimination to ensure genetic fairness,” said Joyce Gordon, President and CEO, Parkinson Society Canada and Chair, Neurological Health Charities Canada and Canadian Coalition for Genetic Fairness.
This was the concluding statement made by Joyce Gordon in her December 10, 2014 presentation to the Senate Standing Committee on Human Rights on Bill S-201, An Act to prohibit and prevent genetic discrimination. Along with several others, Gordon testified on behalf of those with Parkinson’s disease and other neurological conditions, in favour of genetic fairness legislation.
Canada is moving forward with genetic-based initiatives, such as personalized medicine and research through Genome Canada, yet it remains the only G7 country without formal provisions in place to protect Canadians from genetic discrimination. Outdated laws enable insurance companies to discriminate based on perceived disability or the prospect of future disability. They can use genetic information to determine eligibility, set premiums and manage their risks. The potential exists for employers to also discriminate based on a future perceived disability. Today, insurers and employers can legally ask a person if they have undergone genetic testing and, if so, request the results.
While genetic testing and research can yield many benefits in developing medical treatments and personal efforts to reduce health and financial risks, many choose not to undergo genetic testing. Gordon related the following story to the Senate Committee:
‘My father, aunt and second cousin were all diagnosed with Parkinson’s disease and my sisters and I were interested in receiving genetic testing to see if we have the gene associated with Parkinson’s. However, because we fear our children will be at risk of discrimination should a possible link be found and that we may have difficulty receiving insurance, we decided against any genetic testing based on the potential negative impacts it could have.’
Genetic information is personal, complicated and often misunderstood. For instance, the vast majority of Parkinson’s cases are sporadic, with no identifiable cause, and only five to 10 per cent of the Parkinson’s community is affected by a genetic form of the disease. In addition, different genes can cause the same disease, and a massive 95 per cent of the time one disease is actually the result of interplay among genes. For example, there are 28 distinct chromosomal regions related to Parkinson’s. Yet we currently allow insurers and employers to apply their own analysis and formulas to interpret genetic testing results and discriminate against Canadians.
Canada’s lack of genetic fairness legislation is a barrier to citizens participating in health research, including personalized medicine initiatives. And, genetics is a vital area of Parkinson’s research, offering the hope of finding a cure and better treatments.
“Canada must put legal safeguards in place, so that we can fully realize the benefits of genetic research and testing without the negative side-effects of discrimination,” says Gordon.
You can read Joyce Gordon’s full presentation or watch it online. Private Member Bill S-201, an Act to prohibit and prevent genetic discrimination, is currently in its second reading in the Senate, and is being reviewed by the Senate’s Standing Committee on Human Rights. We urge you to ask your senator to support Bill S-201. For more information on how to connect with your Senator, click here.
In the meantime, Parkinson Society Canada will continue to keep you apprised of the progress in the legislation and to advocate for genetic fairness on behalf of all Canadians living with Parkinson’s and their families.