As the price of sequencing a person’s entire DNA has tumbled from $1 billion a decade ago to a few thousand dollars today, many adults—and their physicians—are turning to genetic tests to better understand and manage their health. Particularly given the recent drive to reduce healthcare costs, this sector is set to grow in concert with the field of pharmacogenomics, where test results predict patients’ responses to certain drugs – thus helping doctors and patients decide what should be taken and in what dose. (Already perhaps a tenth of all prescription medication—cancer drugs, blood thinners, epilepsy treatments and so on—has labels alerting you to companion genetic tests.) All in all, it is evident that this sector will continue to evolve – it is likely that, in 10 or 20 years, most individuals will have their genomes sequenced.
Glaringly absent from the evolution of this new area of technology, however, is a body of law adequate to regulate this industry comprehensively. Support organizations for diseases such as Huntington’s have received reports that their members have suffered genetic discrimination but have not wanted to trigger the human rights process. In response to these challenges, the United States passed the Genetic Information Nondiscrimination Act (GINA) in 2008. This legislation prevents insurers from using the results of genetic tests to charge higher premiums or deny health insurance coverage altogether. The law also bars insurers from asking for or requiring genetic test results.
Canada, however, has not adopted similar measures. Struggles in the absence of legislation have been recently chronicled by the Globe and Mail. While Dr. Stainsby, a Toronto chiropractor, understood the odds and could anticipate the magnitude of the physical and emotional changes a diagnosis could bring, she didn’t realize that simply coming from a family with a history of Huntington’s disease could disqualify her for life or disability insurance. As she was preparing to start her own practice, she learned that it would be extremely difficult, if not impossible, to get covered if she indeed had the genetic variant that causes the disease. “It was just so crushing and such a crazy realization,” she said. “It was just flat-out discrimination and completely out of my control.” According to Dr. Hayden, Canada Research Chair in human genetics and molecular medicine at the University of British Columbia, these effects are significant. One of the world’s foremost Huntington’s disease researchers, Dr. Hayden conducted a 2009 study, published in the British Medical Journal, which found 30 per cent of those at risk for Huntington’s disease reported discrimination in the form of rejection for insurance, premium increases or demands to undergo genetic testing.
In its Position Statement on Genetic Testing, the Canadian Life and Health Insurance Association (CLHIA) has stated that while insurers would not require an individual to undergo testing in order to obtain insurance, if genetic testing has been done and the information is available to the applicant for insurance, the insurer would request access to that information just as it would for other aspects of the applicant’s health history. While this information is subject to federal privacy legislation under the Personal Information Protection and Electronic Documents Act (PIPEDA), it still forms part of the risk analysis and underwriting process.
Although the issue has been extensively examined at conferences, by academics and by a multi-stakeholder Task Force on Insurance and Genetics (2004), there are no laws in Canada that specifically address the use of genetic information by insurance companies. Nor has any government imposed a moratorium on the use of genetic information for insurance purposes. According to Dr. Hayden, Canada is the only G8 country that doesn’t have laws to protect citizens against aspects of genetic discrimination.
The Canadian Human Rights Act and provincial human rights codes are potentially relevant to the extent that they prohibit discrimination or discriminatory practices on the basis of disability, age, sex, race and other enumerated grounds. However, as law professor Errol Mendes has stated, there is no doubt that pre-emptive regulation is a superior strategy to dealing with a potentially huge backlog of individual complaints before human rights tribunals or privacy commissioners. A comprehensive framework of stand-alone legislation could include establishing a specialized oversight body, along the lines of the Human Genetics Commission. Canadian efforts could me modelled on those of the 45 states to regulate the use of genetic data, including 35 states that explicitly prohibit genetic discrimination in employment and federal law prohibiting the use of genetic information by insurance companies altogether.
While the CLHIA believes that an insurance contract is a “good faith” agreement under which access to genetic information is justified, patient advocacy groups, such as the Canadian Coalition for Genetic Fairness, worry that large numbers of individuals will be denied coverage or charged prohibitively expensive rates unless the use of genetic information by insurers is controlled. A spillover effect of the absence of legislation regulating this industry would be an increase in decisions not to undergo genetic testing that could benefit them and other members of their family. The research papers contemplated by the Privacy Commissioner of Canada reached the same conclusion: a legislative ban on insurance industry access to genetic information on either complex/multifactorial disorders or monogenic (single-gene) disorders would not have a significant impact on the efficient operation of insurance markets. From a social welfare perspective, as well as an economic efficiency perspective, a legislative ban would be beneficial: Individuals would be more likely to undergo testing, and increased testing not only has the potential to improve an individual’s wellbeing, “it is also possible that the overall health care system could be made more efficient and less costly.”