What can insurers do with my genetic information?

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In 1997, UNESCO adopted the Universal Declaration on the Human Genome and Human Rights. A great deal of scientific advancement has been made since then, yet Canada lags behind in its protection of genetic information. Bill S-201, currently under debate in Parliament, aims to change that. There are many potential consequences of the wide availability of genetic information to insurance companies, few of which are beneficial to the consumer.

At first glance, it would seem that the Insurance Act and the Human Rights Act both prohibit discrimination against consumers. Upon further inspection, however, it is noted that genetic information does not figure among the list of prohibited grounds of discrimination. Furthermore, the Human Rights Act allows for discrimination if there exists a “bona fide qualification”. What that is exactly is not defined, however the Supreme Court of Canada has interpreted it to mean that insurance companies can, for instance, discriminate against young, unmarried men as long as there is a causal connection between the information used and the basis for discrimination. This is just one example of acceptable discrimination.

It is clear why an insurance company would want to consider discriminatory characteristics in their assessment of whether to insure someone or what premium to charge. After all, it is all just a game of probability. The more likely it is that someone will be injured or fall ill, the higher the risk that the insurer will have to pay. The more available information, the more accurately the insurer can assess this risk. Genetic information is perhaps the best way to predict what will happen in the future.

The consumer, however, would have few, if any advantages from the disclosure of her genetic information.

One disadvantage to the consumer is difficulty in getting coverage. Suppose a person had genetic testing with respect to hereditary heart problems. The test reveals that she carries the gene, but has no symptoms. If the insurer is allowed access this information, they may deny her coverage or charge higher premiums based on a problem that does not even exist.

Another potential problem is the consumer’s right to not know. If insurance companies were allowed to require genetic testing, just as they can require a physical examination, a person may find herself with personal genetic information she did not want to know. While some people would like to know if they have a higher risk of breast cancer, others would prefer not to know.

Furthermore, we must not forget that genetics are hereditary. The genetic information of one person does not exist in a vacuum; it is linked to the information of family members. Whether an insurer requires genetic testing, or is allowed access to results that already exist, the privacy interests of family members are equally exposed.

It remains to be seen what will come of Bill S-201; it does have its detractors. If it is adopted, however, it could offer some much needed protection for consumers against insurance companies.