York University researcher to lead patient partnership for CIHR funded national genome library initiative
York University Public policy and administration Professor Ian Stedman, a principal applicant on a $15-million grant for the recently announced Pan-Canadian Genome Library (PCGL) will establish the team responsible for patient partnership, participant engagement, training and outreach for this initiative, billed as the first-of-its-kind national genetics database.
“We are at a turning point where the scientific community has come to take seriously the patient-centric expression ‘nothing about us without us,’” says Stedman, a professor with the Faculty of Liberal Arts and Professional Studies, who himself lives with a rare genetic condition.
“Our goal with the PCGL is to continue to advance, pushing back on the status quo, and to elevate expectations related to the important role that patient partners must play in scientific research,” says Stedman, adding they will have a key role in creation and dissemination of patient and user engagement resources. “Some of our patient partners will take on roles that bridge multiple working groups, thus helping us improve both community and operational synergy across the project.”
Patient partners will be included in all relevant aspects of the technical work for PCGL, in decisions about dataset diversity and representativeness, in ethics, policy and regulatory decision-making.
Stedman will also be member of a working group that oversees ethics, public policy and regulatory compliance for the library that aims to capture, store, and improve access to Canadian genomic data, in an equitable, secure, and sustainable manner.
Dr. Guillaume Bourque, director of bioinformatics at the McGill Genome Centre will lead the project funded by the Canadian Institutes of Health Research (CIHR) with a team of researchers from partnering institutions, including York University.
The CIHR grant builds on investments from the Government of Canada’s Drugs for Rare Diseases Strategy, and will provide researchers and health care professionals with a centralized database that reflects the rich diversity of people living in Canada, according to a federal government news release.