In 2009, the U.S. passed the federal Genetic Information Nondiscrimination Act which bars discrimination by insurers and employers based on genetic test results. The law was enacted in response to breakthroughs in genetic testing, including the development of readily available tests that can detect whether individuals are at risk for certain diseases or other medical conditions. Developments had raised concerns that employers or insurers would use the information to deny coverage or employment to those at higher risk.
Genetic testing has come a long way. Tests have been developed to determine the probability of someone being potentially at risk for dementia, osteoporosis, schizophrenia, bipolar disorder, and numerous other diseases. Currently, individuals tend to be the focus of genetic testing for their personal or health reasons. This is where the privacy of such information becomes important, particularly as it pertains to employment and health or life insurance. However, despite many advances in the science of the human genome, the fact is that it is still difficult to predict with absolute certainty that an individual will actually have the disease based solely on genetic testing. Other important environmental considerations must also be taken into account when examining a person’s potential health risks.
For these reasons, laws are required to prevent genetic discrimination and to guarantee the rights of people to privacy of genetic testing results. This is a matter between the individual and his/her physician, not to be shared with anyone else without the individual’s consent. As was the case in the U.S., the Canadian Life and Health Insurance Association on behalf of insurance providers believes that insurers have every right to information about a client’s genetic makeup. However, given the reasons for genetic testing, the uncertainty of the science and other environmental considerations, the need for and use of such information by insurers and employers is really questionable.
Recently, a private members’ bill from the Senate was passed which would ensure that Canadians can get genetic tests to help identify health risks and take preventive measures. This could be undertaken without fear that they’ll be penalized when it comes to getting a job or life and health insurance. However, in a bizarre twist, the federal government is arguing that the bill amounts to an unconstitutional use of the federal criminal law power to intrude into provincial jurisdiction to regulate the insurance industry. This ignores the fact that under Canada’s Charter of Rights and Freedoms, Canadians have the legal right to life, liberty and personal security. The latter should of course include the right to privacy in matters related to their health and well-being. For this reason, the government needs to proceed implementing the bill and stop its stall tactic of declaring the issue to be an infringement on provincial jurisdiction. Instead, we should get on with ensuring the privacy of people’s health information, especially when it comes to genetic testing.
FROLITICKS 
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