Canadian Patients Fear Discrimination with Challenge to Genetic Testing Law

In Canada, it is illegal to require a person to disclose results of genetic testing in any form of contract. The government of Quebec, however, recently issued a series of challenges to this piece of legislation. Medical professionals and researchers now worry that Canadian patients could face an increase in discrimination as a result. Keep reading to learn more, and follow the original story here for additional information.

The Canadian Genetic Non-Discrimination Act (GNA) became effective as law on May 4th, 2017. Now it faces challenges from the government of Quebec on grounds that the law defies their constitution. The government argues that the act steps over the rights and regulations surrounding the insurance industry. By preventing agencies and corporations form denying services, the government argues, the law infringes on provincial jurisdiction.

Researchers like Yvonne Bombard worry that repeal would lead to discrimination.

Bombard works as a genomics and policy researcher at the Li Ka Shing knowledge Institute in Toronto. Changes to the GNA, she says, would harm both the health and freedom of patients throughout Canada. Bombard views the GNA as the best possible way for Canadians to have access to the best health care and to protect them from information being used against them.

The decoding and understanding of the human genome allows for great advance sin medical science. One example, is that better understanding of the genome enabled the creation of genetic testing. It is now possible for doctors to diagnose many diseases early and prevent them from becoming life threatening or otherwise mitigate the effects of the disease.
Bombard, however, witnessed cases in which people, as a result of testing, became victims of genetic profiling. Parents, for example, may face the choice of discovering the illness affecting their child or placing that child at the mercy of discriminatory insurers. Genetic discrimination, as described by Bombard, led to denial of insurance, failing to get promoted at work, custody issues in court, and denial of participation in foster parenting.

Even negative tests pose their own series of problems. Take the case of Brynne Stainsby. Brynne’s family has a history of Huntington’s disease. At age 27 (seven years ago), Brynne decided to be tested for the rare disease. Finding her test results negative, Brynne experienced a sense of relief. That was until she decided to apply for life insurance. Brynne and her business partners all applied with the same insurer. While everyone else got approved, Brynne faced a much more intricate and lengthy process. Even though she sent her results in the first stages, the insurance company continued to delay her application for coverage.

Insurance professionals, however, express a different take on the matter.

Stephen Frank, CEO of the Canadian Life and Health Insurance Association, says insurance companies must have access to information such as genetic testing. It is not a matter of discrimination but one of efficiency and effectiveness. He says that if insurers don’t understand the risks, they can not price accordingly. One consequence, he predicts, of insurers being denied this information is that they will react defensively. Frank imagines a world in which insurers are unable to find balance, and thus raise prices across all policies to compensate. This, he says, would lead to fewer Canadians insured.


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