Photo credit: The Canadian Press

By Curtis Galbraith

Health

Teepee Creek man, Huntington Society board chair, welcoming Supreme Court ruling on genetics discrimination law

Jul 13, 2020 | 5:30 AM

The chair of the board for the Huntington Society of Canada says it was a banner day Friday when the Supreme Court of Canada upheld this country’s Genetic Non-Discrimination Act.

Mack Erno of Teepee Creek says the ruling upholding a law that prohibits anyone from being fired or from being denied insurance if a genetic test shows they have a predisposition to an inherited disease is a victory for all Canadians.

“Genetic discrimination is a real thing. We see (it) first-hand and it had the potential to become a bigger problem as we get to know more about our genomes and we’re able to test for different ailments and things that might be in our futures, what does that look like and how is that information used?”

Erno says the law puts a person’s genetic make-up into the same category as other things that can’t be used to discriminate against people, adding genetic discrimination is real and growing as we learn more about the human genome.

He adds it took a 10-year fight to get this law approved.

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“It was really interesting. Canada was one of the only G7 countries, it was the only G7 country, to not have legislation protecting their citizens in this regard. So often, Canada is leading the pack on things like this. For some reason, in this case, we had not.”

A Quebec court had ruled two years ago that the Genetic Non-Discrimination Act went beyond federal jurisdiction. The Canadian Coalition for Genetic Fairness then took the matter to the Supreme Court.

In a Facebook post, Erno praised the Coalition for its work in getting this law approved.

In that same post, he told the story of a young man who told his boss about a genetic test showing he had the gene for a disease on a Friday. The man was fired on the following Monday.

Erno says parents had been reluctant to have genetic tests done on their kids because there was no legal protection for them.

“If they got that genetic test, does it mean that that child of theirs could never get life insurance? Or, might (they) be discriminated against from employment in the future? They have to think about all those things, which is horrible as a parent to think that you have to base your decision on those factors when getting that test could really help your child.”

Huntington’s disease is inherited and attacks the brain. it can cause physical, emotional, and cognitive problems.

Erno says the annual HD Ride 4A Cure will go ahead this year. It is set for August 29 in Teepee Creek, but events will be held the night before and the morning after. The final details are still being worked out.

-with files from The Canadian Press.