Genetic testing as a benefit? A look at the ethical implications

Genetic testing as a benefit 'introduces opportunities for inequities straight off the bat,' says UBC researcher

Genetic testing as a benefit? A look at the ethical implications

A new study in B.C. is looking at how genetic testing can improve treatment for individuals with clinical depression.

Funded by GenomeBC in partnership with the B.C. Ministry of Health, the research will work towards addressing concerns of accessibility around the technology.

With its potential to help patients and medical professionals with more accurate prescribing, faster treatment and reduced costs, some employers are already offering genetics testing as part of their benefits packages through third-party labs.

But could genetic testing perpetuate inequities that already exist in Canadian workplaces?

“[Study participants] were very keen that if it was available to someone, it should be available to everyone,” says Jehannine Austin, co-leader of the project and professor of medical genetics and psychiatry at the University of British Columbia.

“The problem, I think, with offering this through employment plans is that it introduces opportunities for inequities straight off the bat. That's why we've been looking at this from the perspective of ‘What if this was covered, but for everyone through the provincial health care plan, rather than for people who happen to be employed in jobs where this is one of the benefits?’”

Genetic testing can save billions in B.C. healthcare costs

A 2022 study by Austin and their team established the significant cost-saving potential to the B.C. health care system that genetic testing can offer; this new project takes a close look at how the testing can best be implemented into the system.

“What it showed was that if we provided pharmacogenomics [genetic] testing for people with major depression after they've had one attempt at a medication that did not work for them … it would save our healthcare system here about $1 billion over 20 years,” says Austin.

“The genetic testing would mean that people would have to try fewer medications before they find one that works for them. So, it means that fewer people end up being labelled as having treatment-resistant depression.”

Pascale Mapleston, founder and CEO of The Benefit Code, says there is an immediate benefit of offering genetic testing to employees, and the potential for cutting down on rising health care costs is being recognized by employers in Canada, with Salesforce, SAP and Levi Strauss among those adding genetic testing to their wellness suite of offerings.

“I'm happy to hear that we're moving away from ‘medication first’,” Mapleston says. “Now we're talking about mindfulness, we're talking about diet, we're talking about lifestyle, and we're talking about, potentially, a medication being part of that holistic approach to managing your mental health, and if you need a medication, make sure that it works for your genetic makeup instead of the trial-and-error approach that we've forced Canadians to go by.”

Privacy, ethical concerns for genetic testing offered by workplaces

Last year, Manulife announced the launch of its Personalized Medicine program and the results of a pilot study it had been running since 2021. Of the pilot participants, 80 percent changed their medication due to their genetic testing results, and 86 percent reported improvement in their mental health.

However, at the moment, the testing is only accessible to individuals who can pay for private testing or whose employers offer it as a benefit. Their research hopes to fill in that data gap so genetic testing to treat depression can one day be publicly available.

“What we want to do with the idea behind this pharmacogenomic testing is that, wouldn't it be great if you could test people earlier on in that process of trial-and-error with medications, to try and find a medication that's more likely to work well for that person?” says Austin.

“People who have psychiatric conditions often end up in positions where they don't work or can't work. So we don't want this to be something that's only going to be available for people who are working and have benefits.”

There are also concerns around who can access data from genetic test results; there is legislation protecting this data in Canada, the Genetic Non-Discrimination Act was confirmed in 2020. However, the legislation is broad and allows for loopholes, according to some experts.

For this reason, employers offering genetic testing as a benefit need to ensure they are stringent about protecting the privacy of employees, says Austin.

“There has to be really good safeguards in place between the genetic test results and the employer knowing the results of those tests, or even that the test was being ordered,” they say.

“To be frank, these are very stigmatized conditions that we're talking about, psychiatric conditions. So there just needs to be good safeguards in place, to protect people there.”

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