Biotech firm says other researchers back claim oversight board is 'broken'
Sequence Bio says emails and letters reveal the board must be fixed
A St. John's biotech company says it's gathered material that proves the province's Health Research Ethics Authority is "a disaster" and it's calling on the provincial government to step in and reform it.
- Ethics board roadblocks pushing genetic research company out of N.L., CEO says
Sequence Bio wants to look at the genetic makeup of people in Newfoundland and Labrador to find new treatments for common illnesses but lately it's been doing a different sort of research.
What we have uncovered has been quite shocking.- Chris Gardner
After having two, multi-million dollar research proposals rejected by the ethics board, the company started asking questions.
"We've had a very frustrating experience with our initial applications. It didn't seem right. It was inconsistent with what our colleagues were experiencing across the country," said Sequence Bio's CEO Chris Gardner.
Through an access to information request Sequence Bio obtained a letter from a Newfoundland and Labrador pediatric oncologist, whose name has been redacted, saying the ethics board "has been obstructive' and its decisions are limiting treatment options for children with cancer.
Sequence Bio has also released a letter from researcher and family doctor Dennis O'Keefe, who describes himself as "an active medical researcher in Newfoundland and Labrador for over 25 years"
"If you speak to most clinical trial sponsors they will tell you that they are not bringing any new clinical trials to this province because the Health Ethics Research Board are impossible to deal with," wrote O'Keefe.
"[The board's] lack of respect and consideration for the people and patients of this province is shameful."
Different experience elsewhere
This winter Sequence Bio hired a new chief scientific officer, Michael Phillips, who has worked with health research ethics boards in both Quebec and Ireland.
I think that the current HREB in this province is broken.- Michael Phillips
"My experience since I have been in Newfoundland and Labrador has been that the HREB here is out of sync with the rest of the country and they aren't working with the researchers in a collaborative fashion. Honestly, right now, I think that the current HREB in this province is broken."
Sequence Bio said it is calling for a solution on behalf of frustrated researchers, and wants Health Minister John Haggie to step in.
"When a system like this is broken for which his department is fully responsible for it's up to them to fix it," said Gardner.
He said the province should bring in an experienced, independent research regulator, at least until the current board is reformed.
Health minister not committing to change
Haggie, meanwhile, isn't convinced there is a problem that needs to be fixed.
"I don't know what the problem is specifically and until then I can't really get staff to advise me on what the options are for solutions," said Haggie.
"So I'm sorry to sound vague but this binder has arrived and it needs to be looked at."
Sequence Bio is also taking legal action against the ethics board, asking the Newfoundland and Labrador Supreme Court to order the board to to follow provincial legislation.
The case is back in court June 6.