A Newfoundland and Labrador biotechnology company is looking for 2,500 people to volunteer their genetic and medical information for research that seeks to develop new treatments for common illnesses.
“We are looking for drug targets. Meaning, if we can identify particular changes to the genetic code that can be treated with a drug, that’s what we’ll contribute to, and this is an industry that is global,” said Sequence Bio CEO Chris Gardner.
The announcement comes after two of Sequence Bio’s earlier research projects were rejected by the provincial authority that vets human research proposals in Newfoundland and Labrador. The Health Research Ethics Board was established by provincial legislation to ensure all human research in Newfoundland and Labrador is done ethically.
Innovation is challenging and for those of us who are new to a space, sometimes we have to push people.
In 2018, Sequence Bio took the ethics board to court to ask a judge to rule that the board must make a decision on a research proposal within 30 days of receiving it.
In the end, a judge agreed.
But before that decision was handed down, Sequence Bio proposed genetic research on thousands of volunteers in New Brunswick. The company’s NB Genome Project was approved in August.
All that aggressive manoeuvring and criticism of the ethics board left some people in the province’s small genetic research community wary of Sequence Bio.
Garner says the company wants to put that behind it.
“I think innovation is challenging and for those of us who are new to a space, sometimes we have to push people, whether that’s making sure the law is interpreted correctly or making sure people understand what we are doing,” he said.
Recruiting family doctors
This summer, Sequence Bio has recruited three family doctors on the Avalon Peninsula to help it find NL Genome Project volunteers.
Already 300 people have agreed to share their genetic and medical information. Gardner says the company hopes to be working with as many as 10 family doctors by the fall of 2019.
The company says it will maintain complete control of the information it gathers, but is using a Ontario laboratory, The Centre for Applied Genomics in Toronto, to do some work for it.
Founder population a gold mine?
Newfoundland is one of only about a dozen places in the world that has what genetic researchers call a ‘founder population’ — a relatively homogenous population that can trace families, their members, and their illnesses, back though many generations.
This allows researchers to traces diseases that run in families. Ultimately it’s hoped founder populations will help researchers identify genetic mutations linked to specific illnesses and then find better treatments for them.
It’s expected genetic research on founder populations will someday lead to pharmaceutical companies to valuable treatments that could help people world-wide.
Ethicist urges caution
A Memorial University medical ethicist who’s received a Governor General’s award for his role in genetic research is warning people not to expect quick results.
“Fifteen years ago we were calling it ‘geno-hype’ — you know, the idea that now we’ve got your genes, now we’re going to solve all your health problems,” said Daryl Pullman, director of the univeristy’s Centre for Bioethics.
Pullman is also urging prospective research volunteers to consider the decision to share their genetic information carefully.
“Once we’ve released it, it can be very difficult to have some kind of control over it and how it is going to be used,” he said.
Gardner says that won’t be a problem for NL Genome Project participants.
“We firmly believe that participants own their data and at anytime they can withdraw from this project and their data will be deleted,” he said. “”We never sell data. What we are interested in is the insights we can gain from the data itself.”
While Pullman said he is not aware of the details of Sequence Bio’s project, he suggested some questions prospective volunteers for any genetic research might ask.
“What kind of risks might there be to me and my family? How can we be sure that our information is going to be protected and that we are not going to be surprised down the road because somebody has passed our data on to a third party that we didn’t have any control over?” he said.
“How can I be sure that my data is going to be used only for the purposes that I have suggested? Will this [information] be sold for other purposes? If it’s a private company and it’s sold to another company, what will be the status of my data then?”
