Huntington Society of Canada Winter 2018 Horizon Article

Going to Court to Protect Genetic Fairness
By Julie Stauffer as written in the Winter 2018 issue of Horizon

In May 2017, the Genetic Non-Discrimination Act (GNA) received royal assent – was passed into law – and for a few brief hours, we celebrated that landmark achievement. The next day, however, the federal cabinet said they would refer the new law to the Supreme Court.

Two steps forward, one step back.

The cabinet hasn’t followed through on that yet, but as we described in the last issue of Horizon, the Quebec government has decided to challenge the new law. If the Quebec court of Appeals rules against the GNA, the case will automatically go to the Supreme Court of Canada.

Bev Heim-Myers, CEO of the Huntington Society of Canada and Chair of the Canadian Coalition for Genetic Fairness (CCGF), believes this move is probably driven by the insurance industry – and that’s simply not acceptable. “We should not overturn this law and put the interests of the insurance industry above the interests of all Canadians,” she says.

Rest assured, we’re taking action. The CCGF has been granted official intervenor status so that we can argue why the court should uphold a law that received all-party support and the backing of Canadians across the country.

The Canadian Human Rights Commission will also argue in favour of upholding the current law, but British Columbia’s Attorney General, the Attorney General of Canada, and the Canadian Life and Health Insurance Association will take the other side.

We’re working with our lawyer to prepare our written submission and oral arguments to the Quebec Court of Appeals. If the case ends up going to the Supreme Court, we’ll continue our vigorous advocacy there. “We are not going to give this up,” says Bev. “This is much too important for all Canadians.”

In the meantime, what does this mean for your genetic test information?

Right now, the GNA is law, and that protects your genetic test information, no matter where in the country you live.

If the law ends up being overturned – something we’ll be working very hard to prevent – any test results you get between now and then will probably stay protected, according to the experts we’ve talked to. Unfortunately, that’s not one hundred percent guaranteed.

As a measure of protection, we’re suggesting healthcare providers put a note on your file with the date of the results and instructions not to share them with anyone without your explicit written consent.

Ultimately, every person who is considering genetic testing will need to decide for themselves whether now is the right time to go ahead.

“This is far beyond the interests of the insurance industry,” says Bev. “They have survived in other jurisdictions that protected genetic test information. The GNA is about protecting your genetic information from employers, landlords, schools or anyone who chooses to use it against you.”

For now, your genetic test information is protected. Help keep it that way! Let your MP and the Prime Minister know how important this is to you. Write them a letter to ask them to honour Canada’s new Genetic Non-Discrimination Act and protect the interests of Canadians across the country.

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