One of the most exciting avenues of future medical treatments can be found in genetic testing. In addition to revealing individuals’ susceptibility to certain diseases — though this knowledge may not always be beneficial — researchers are hopeful that genetic testing in combination with artificial intelligence can deliver a new age of effective, personalized treatments.
However, with such a deep and sensitive level of health information comes the need to ensure privacy and safety. Following in the footsteps of the United States and Germany, Canada passed the Genetic Non-Discrimination Act in 2017 (GNDA), which banned providers of goods or services from requiring genetic tests or the disclosure of previous genetic tests. The aim of the GNDA was to ban genetic discrimination (GD), or discrimination based on someone’s genetic profile, such as in the insurance sector. Yet how effective was this legislation?
As previous studies have demonstrated, well-intentioned laws may not always be effective in changing corporate behaviour. A new study from researchers at McGill University suggests that while the passage of the GNDA has seen some changes in the practices of life insurance providers, the risk of GD still exists.
The researchers focused their investigation of ongoing GD on the life insurance industry in Canada. This field is particularly susceptible to GD, as individuals who are found to be more at risk for certain diseases after genetic testing could face much higher insurance premiums.
After narrowing the field down to 34 eligible insurance providers, the team used keyword searches on the websites of providers, Google searches, and contacted the customer support lines of life insurances providers to obtain the life insurance applications of 16 of the providers.
One of the primary areas of concern was the use of overly broad language in sections of the application that asked individuals about their medical testing history. The study found that 75% of the application used broad language in these sections, which could potentially lead to applicants disclosing the results of genetic tests — something that is explicitly banned by the GNDA.
Altogether, 63% of the sampled life insurance companies used the expression “diagnostic test” when asking about applicants’ medical testing history, which the authors warn could lead to accidental disclosure of genetic results. Nearly 40% of the applications asked about visits to a specialist, which once again, the researchers warn could be interpreted as including specialists relating to genetic testing.
The study highlights another concerning route through which companies could circumvent GNDA requirements: asking about the family medical history of applicants. Of the applications that included a family history portion, nearly 90% inquired about cognitive or mental disorders, most of which have genetic components.
However, there is also some good news: 25% of the sampled companies did explicitly tell applicants to not include genetic test results — something that would be unlikely before the passage of the GNDA.
Though they acknowledge limitations due to their small sample size, the authors conclude by stating that “while the GNDA may be a positive first step in combating GD, it still suffers from important limitations and does not resolve the controversy around GD.”
