Last week the Office of the Privacy Commissioner of Canada released their statement on the use of genetic test results by Life and Health Insurance Companies.
Over the past few years, the Office of the Privacy Commissioner (OPC) of Canada had been examining the privacy implications arising from the collection and use of genetic information as one of the key policy priorities.
The OPC monitored developments, commissioned research papers, consulted key stakeholders and held expert roundtables in the area of genomics and privacy. Rightfully so, the process has taken time so that the OPC could gather enough information to create the best informed policy statement possible.
The policy statement can be found at https://www.priv.gc.ca/media/nr-c/2014/nr-c_140710_e.asp .
As you may know the Huntington Society of Canada has led the 16 member Canadian Coalition for Genetic Fairness to advocate for a genetic fair Canada. The newly released position statement by the OPC is validating and reinforces that insurance companies have access to enough information to assess risk and that the use of genetic test results is not proportionate or necessary.
It is past time that people had the freedom to choose to undergo genetic testing to better understand disease risk, prevention, treatment or clinical trial participation, without the fear of negative impact from the insurance industry.
Ending genetic discrimination was mentioned in the Speech from the Throne last fall and identified as a priority for the federal government. We continue to work with the federal government to help support a solution going forward.
The genetic non-discrimination Bill S 201, which was re-tabled by Senator James Cowan in October, has made it past second reading and debate and will move to hearings in the fall. This is the most comprehensive genetic non-discrimination bill to date and is a step towards legislating against genetic discrimination.
Our federal policy and decision makers will have a busy summer laying the foundation for what is to come, to protect all Canadians from their genetic information being used against them. Genetic fairness remains on their radar. Please let your Senator, MP and MPP know that it remains on yours as well.