The CEO and co-founder of Sequence Bio is accusing the Health Research Ethics Authority (HREA) of acting unlawfully and unethically when it comes to research applications.
Sequence Bio has applied for approval for research on both the NL Genome Project and the Colorectal Cancer study.
CEO Chris Gardner says it took 203 days for the HREA to make a decision on the NL Genome Project and 114 days for a decision on the cancer study. As per the HREA Act, the research ethics board should consider applications referred to it within 30 days of receiving it.
Both applications were eventually denied.
Gardner says the issue is a lot bigger than Sequence Bio.
Gardner says the net impact is that patients are not able to gain access to leading clinical trials and treatments for their particular diseases despite doctors wanting to enroll them.
He says that’s not happening, and it’s impacting health in Newfoundland and Labrador. The reason, he says, is the research regulator (the HREA) is unfairly denying ethical research from happening in this province.
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Gardner says that Health Minister John Haggie previously indicated that there are problems, and Gardner says immediate action must be taken.
Gardner says every other province recognizes multiple, accredited, non-profit regulators. The only way it gets fixed, says Gardner, is if the Minister of Health comes forward and recognizes another regulator that is free from bias and puts NL in line with every other province in Canada. He thinks Newfoundlanders and Labradorians deserve better.
Gardner claims the HREA is failing the people of the province.
Meanwhile, Health Minister John Haggie says the HREA is at arm’s length from government and he’s not sure what his department can do to intervene.
On May 3, concerns were brought to the Health Minister during question period where he was asked about a supervisor on the ethics board who had a personal vendetta against members with Sequence Bio.
Haggie says at this point he’s only hearing one side of the story and his department will have to investigate to find out exactly what’s going on between Sequence Bio and the ethics board.
Health Minister Haggie says the HREB is at arms length from government and reports to the HREA, and he's not sure if there are means for him to get involved with the Sequence Bio dispute. @VOCMNEWS pic.twitter.com/a50zVAgHvM
— Meech Kean (@meechkean) May 14, 2018