'No consequences' for violating human rights in privately funded research in Canada, says ethics expert
CBC
When Janice Parente read a CBC story this past spring about a dubious brainwave study targeting primarily Indigenous kids in Saskatchewan, it immediately piqued her interest.
That's because the Quebec-based scientist and research ethics expert was putting the finishing touches on a book critiquing Canada's system of research oversight.
The Prince Albert School Study (PASS), which ran from 2014 to 2016, was conducted to test the benefits of brainwave training on 12- to 15-year-old children and their parents or guardians.
James Hardt, the American scientist leading the study, claims brainwave training can make participants smarter, happier and enable them to overcome trauma. He said it can also allow them to levitate, walk on water and visit angels.
Parente said the sheer volume of red flags in PASS took her breath away.
"It violated everything," she said, describing it as a "jackpot" of failure.
Knowing that PASS had been approved by two Canadian universities, Parente thought, "I could write a book just on this." Instead, she is adding a chapter on it in her forthcoming book, tentatively titled Ethics on Trial: Protecting Humans in Canada's Broken Research System.
But through her interactions with CBC, Parente made another discovery: the federal government body that oversees research ethics, the Secretariat on the Responsible Conduct of Research, does not have jurisdiction over privately funded clinical trials — which make up about 85 per cent of all such research in this country.
"I was shocked at this revelation," she said. "Everyone I have spoken to were just as shocked."
Martin Letendre, a Quebec-based lawyer and research ethicist, said this fact demonstrates that Canada's research ethics system is the "wild West."
"Clearly, it makes absolutely no sense," said Letendre, who is president of Veritas IRB, a private research ethics board founded by Parente. "It's going to come as a total shock to anyone in academia who is studying or experts on the governance of research in the country."
Parente says if she wasn't aware of the Secretariat's lack of jurisdiction in these cases, neither are the majority of people who volunteer to be part of research studies. She says that needs to be fixed.
"That should be on the informed consent form: 'This study is being funded by a private stakeholder and therefore, should anything happen to you, you're shit out of luck,'" she said.
Alma Stonestand and her daughter Chyna took part in the PASS in 2014.
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