Privacy watchdog urges Canadian insurers not to ask for genetic test results

Out-Law News | 22 Jul 2014 | 10:49 am | 2 min. read

Canada’s privacy watchdog has called on the country’s health and life insurance industry not to ask applicants for access to existing genetic test results, “until such time as they can be shown to be demonstrably necessary and effective”.

The Office of the Privacy Commissioner (OPC) acknowledged that “insurance industries need to collect and use personal information to assess risk”, but said “that a legitimate need does not necessarily give an organisation the authority to collect any and all personal information on the grounds that it might be useful or relevant”.

OPC said its call would “effectively expand the industry’s current voluntary moratorium on asking applicants to undergo genetic testing”.

OPC said in a policy statement that it had analysed the collection and use of genetic test results in light of existing legislation relating to personal information protection.

In reaching its conclusions, the OPC said it had asked itself whether the collection and use of personal information was “necessary to achieve a legitimate business purpose”, whether gathering personal information was “likely to be effective in achieving that purpose”, whether the collection and use was “proportionate to the benefits gained... and if there are less privacy-invasive alternatives”.

Privacy commissioner Daniel Therrien said: “We are calling on the industry to refrain from asking for existing test results to assess insurance risk until the industry can clearly show that these tests are necessary and effective in assessing risk. This would allow people to undergo genetic testing for various purposes without fear that the results may have a negative impact if they apply for insurance.”

Therrien said: “As science and technologies advance, protecting genetic privacy will become increasingly important and challenging.”

According to OPC, there is currently “no specific legislation” that addresses the use of genetic test results by insurance companies. However, the OPC said the issue had prompted moves by parliamentarians at both the federal and provincial levels to introduce legislation.

OPC said the Canadian Life and Health Insurance Association’s position on genetic testing states that an insurer would not require an applicant for insurance to undergo genetic testing. “However, if genetic testing has been done and the information is available to the applicant for insurance and/or the applicant’s physician, the insurer would request access to that information just as it would for other aspects of the applicant’s health history.”

The World Health Organisation (WHO) has said: “As with other areas of clinical medicine or science, confidentiality is important in genetic testing. If anything, the confidentiality of genetic information may need to be guarded even more stringently than in the ordinary case. Genetic tests give an assessment of an individual's inherent risk for disease and disability.”

WHO said: “This predictive power makes genetic testing particularly liable for misuse. Employers and insurance companies have been known to deny individuals essential health care or employment based on knowledge of genetic disposition. This type of discrimination can be socially debilitating and have severe socio-economic consequences. It is important, therefore, to ensure the confidentiality of test results, and to establish legislation permitting only selective access to this information.”