(Guest post from Maeghan Toews, GE3LS Coordinator for Genome Alberta, and a Research Associate with the Health Law Institute at the University of Alberta)
The Office of the Privacy Commissioner of Canada recently released a statement on the use of genetic test results by insurance companies offering health and life insurance. The Privacy Commissioner examined this issue in the context of the federal Personal Information Protection and Electronic Documents Act
(PIPEDA), which governs the collection, use and disclosure of personal information by organizations engaged in commercial activity. PIPEDA limits the use of personal information to “purposes that a reasonable person would consider are appropriate in the circumstances” (section 5(3)). In the statement, the Privacy Commissioner applied a legal test derived from this provision and concluded that the use of information obtained through genetic testing by health and life insurance companies is not justified at this time.
The Canadian Life and Health Insurance Association (CLHIA) had previously undertaken a voluntary moratorium
whereby insurance companies agreed not to request insurance applicants to undergo genetic testing. Based on the Privacy Commissioner’s recent finding, the Privacy Commissioner has now called upon CLHIA to extend this moratorium to cover requests for existing genetic test results that applicants have already undergone.
In reaching its conclusion, the Privacy Commissioner rightfully pointed out that, with the exception of testing for a limited number of monogenic disorders, the predictive capability of genetic testing is currently limited to the extent that the use of this information for insurance underwriting and risk assessment is unnecessary and ineffective. While reliance on alternative forms of health information for these purposes remains viable for the time being, it is important to note that the Privacy Commissioner’s statement left open the possibility that this may change as technology evolves and the predictive value of genetic testing grows stronger.
As the Privacy Commissioner’s statement did not close the door on this issue, and as there is currently a debate about whether Canada should enact legislation prohibiting the use of information derived from genetic testing, this question is far from settled. Underlying the Privacy Commissioner’s statement as well as arguments supporting specific legislation in this area is the idea that genetic information is somehow exceptional compared to other types of health or medical information and is therefore worthy of stronger privacy protection.
Other jurisdictions have enacted legislation on this issue, and the United States’ Genetic Information Non-discrimination Act
(GINA) is often raised as an example. However, there are important differences between the Canadian and American health care and political landscapes that should be kept in mind as this debate progresses in Canada. Notably, GINA does not prohibit the use of genetic test results in the context of life insurance and is limited to health insurance and employment settings. This is because the major impetus behind GINA was the fear that many Americans could be left without health insurance as a result of genetic testing, which is of far less concern in the Canadian publicly funded health care system.
It is also worth questioning the rationale behind the notion that genetic information is in some way exceptional and in need of specific protection. The general purpose of the underwriting process is to assess the terms of an insurance policy based on the applicant’s risk. It is unclear why health information disclosing a medical condition that is derived from genetic testing should be excluded from this assessment while health information derived from other forms of diagnostic testing is not. The Privacy Commissioner’s statement emphasizes that people undergo genetic testing for a variety of reasons that may be unrelated to health and asserts that the purpose behind the testing is relevant to whether it should be used by insurance companies. However, the purpose for which genetic information is sought does not alter the character of the information as being medical or health information that, someday, could be an effective and necessary tool for insurance companies in allocating risk.