Genetic Non-Discrimination:
Civil Rights in the 21st Century
By Gregory Ringkamp, J.D. candidate, University of Toronto Faculty of Law
As genetic information becomes increasingly easy to access, new questions have arisen as to how society should permit the information to be used. When the United States adopted the Genetic Information Nondiscrimination Act in 2008, Senator Ted Kennedy couched it in terms of human rights, referring to it as the “the first civil rights bill of the new century of life sciences.”[1] The Genetic Non-Discrimination Act, which became law in May 2017, is set to bring similar protections against genetic discrimination to Canada.
Genetic testing is a powerful predictive tool, and rapid advances in medical technology have made it more available to the public than ever before. 23andMe, a private genetic testing company, allows users to learn about their susceptibility to certain diseases, and about their likelihood of passing them on to their children, for the cost of just $249. The medical community is moving toward a better understanding of how a person’s unique genetic characteristics influence their response to treatment, opening the door to a future of better-tailored drugs.
But the increasing prominence of genetic information has also brought new concerns about how such powerful predictive information ought to be used. An accurate prediction about someone’s future wellness may be of particular interest to employers and insurers, who could plausibly use the information to make hiring or coverage decisions. Because one’s genes cannot be changed, such a possibility raises issues of fairness. Individuals cannot choose their genes any more than they can choose their race, sex, or national origin; it would seem to offend basic notions of fairness to allow someone to be treated differently on this new basis. Additionally, fears of genetic discrimination (even if unrealized) may make it harder for researchers to advance the field of genetics. Fear of genetic discrimination has been found to be a significant reason why patients choose not to participate in genetic studies.[2]
The Genetic Non-Discrimination Act, like similar acts in the United States and Europe, addresses these concerns. By assuring Canadians that the genetic tests they undergo will not be used against them by insurers, employers, and others, the Act theoretically makes the tests more attractive, while also preventing unfair discrimination on the basis of genetic information.
In addition to amending the Canadian Human Rights Act to add “genetic characteristics” as a prohibited ground of discrimination, the Act amends the Canada Labour Code to prevent employers from requiring their employees to undergo genetic testing. The Act also prohibits anyone from requiring genetic testing, or the disclosure of genetic results, as a precondition for providing goods or services. In its most obvious application, these provisions of the Act would prohibit insurers from requiring genetic information when deciding whether or not to cover someone.
However, the Act faces a number of challenges – first, on its fundamental usefulness. Although it might seem logical that a genetic non-discrimination act would make genetic tests more attractive by easing fears of discrimination, at least one study has found this not to be the case.[3]
Furthermore, although the Act would prohibit discrimination on the basis of genetic characteristics, it would create a new inequity – patients with genetic conditions would gain the unique ability not to disclose a preexisting condition to their insurer. It would be fraud for any other patient to do the same, even if their condition was similarly unavoidable.[4]
Additionally, individuals whose genetic tests show that they are at risk for developing a condition tend, naturally, to seek more insurance coverage to offset the risk.[5]. Because of this, the Act may result in increased rates for policy-holders, as insurers increase premiums to account for the greater number of high-risk individuals receiving coverage. Indeed, the Canadian Institute of Actuaries has suggested the Act may cause term life insurance premiums to rise by up to 30 per cent for men and 50 per cent for women.[6] The people least able to afford insurance will be hardest-hit by any such increase in rates.
The Act’s constitutionality is also in question. In July 2017, the Quebec government referred the constitutionality of the act to the Quebec Court of Appeal, asking whether the Act is ultra vires Parliament’s power over criminal law. At the time of writing, the question has not been decided.
GR
References
[1] David H. Kaye, “Gina’s Genotypes” (2010) 108 Mich. L. Rev. First Impressions 51. Available at: http://repository.law.umich.edu/mlr_fi/vol108/iss1/5
[2] AA Lemke, “Public and Biobank Participant Attitudes Toward Genetic Research Participation and Data Sharing” (2010) 13:6 Public Health Genomics 368-377
[3] Amalia Miller & Catherine Tucker, “Privacy Protection, Personalized Medicine, and Genetic Testing” (2017) Articles in Advance, Management Science 1-21
[4] Canadian Institute of Actuaries, “Proposed Amendment to Bill S-201, An Act to prohibit and prevent genetic discrimination” (November 2016), Available at: http://www.ourcommons.ca/Committees/en/JUST/StudyActivity?studyActivityId=9194069#DT20161201JUSTMEE38ID9194069
[5] In the REVEAL Study, Harvard researchers found that individuals positive for a certain version of the APOE gene, which is associated with a greater risk of developing Alzheimer’s disease, were five times more likely to purchase long-term insurance. (https://mobile.nytimes.com/2014/04/08/science/fearing-punishment-for-bad-genes.html).
[6] “Proposed Amendment”, supra at p 2
