The pace of genetic technology is quickening, and we need to be prepared

While it may sound like something born from a science-fiction movie, Canada’s “genetic anti-discrimination” bill, currently in its first reading in Parliament, would make some very important changes if enacted.

Outside of the broad parameters of preventing this kind of inequity, Bill S-201 is also designed to ban access to personal genetic test results and prevent employers or insurance companies from requiring people to take genetic tests. Unfortunately, both of these clauses have faced scrutiny, and might be removed if a revised version of the bill passes.

In a time where personal genetic technology is advancing, and companies like 23andMe are offering such services to the public, it’s imperative that Canadians have legislation to protect them against the misuse of this technology.

For example, 23andMe collects all kinds of data on the people who obtain their genetic information. If this information were to become public, insurance companies would be less likely to give coverage to someone with genetic predisposition to certain diseases. Employers might look at the information as well. And in an age of leaks, hacks, and general misuse of information, is this really such a far-fetched scenario?

There’s still a risk involved even if this information doesn’t go public. Frank Zinatelli, vice-president of the Canadian Life and Health Insurance Association, told Maclean’s in 2015 that insurance companies should be able to demand the information obtained from such tests to ensure an “equal footing.”

And this quandary isn’t purely hypothetical. A 2009 study by the University of British Columbia found that people with a predisposition for Huntington’s disease, an inherited disorder that results in the death of brain cells, suffered discrimination based on their genetics, primarily by insurance providers.

Furthermore, the 2009 study posited that the fear of being discriminated against prevented people from getting genetic testing for their own benefit, for fear of having the results used against them.

Even if this is an important issue, it’s not a federal matter, right? Well, the fact is that in practice we’re currently stuck in limbo with no signs of moving forward. Even though Health Canada says that the job should fall on the provinces, the provinces themselves are showing no interest in addressing the issue.

When there’s such division, we’d be better served with a clear, top-down approach from the federal level rather than waiting aimlessly for all of the provincial governments to start showing interest.

Okay, but the bill wouldn’t be totally useless without these amendments, and would still change the Canadian Human Rights Act to include genetic discrimination, right? That’s true, but this revised bill would not give specific direction on how to address misuse of personal genetic information, as the original bill does, and would be far less likely to resolve future crises in practice.

In fact, passing a pseudo-solution would be more dangerous than doing nothing at all. Critics could easily say that we already have legislation to deal with the issue, and many people might feel assuaged, even though, when push comes to shove, it wouldn’t have any teeth.

Bottom line: personalized genetic testing is a huge breakthrough that can benefit all kinds of people, but we need to make sure it isn’t used to discriminate, lest we make our society a little bit more dystopian.