Self-determination and data control vital to Indigenous health research – CMAJ
July 4, 2018
Health research involving Indigenous peoples must be based on their self-determination and ethical protocols for control of data, said Carrie Bourassa, scientific director of the Institute of Indigenous Peoples’ Health, but “I don’t think that’s well accepted in the research community.”
Bourassa, who is Métis, was a speaker at the Pathways Annual Gathering, an event involving the Canadian Institutes of Health Research (CIHR), First Nations, Indigenous organizations and other partners. The meeting is part of the Pathways to Health Equity for Aboriginal Peoples initiative, which includes several CIHR institutes. It is aimed at improving health in four areas: mental wellness, diabetes/obesity, oral health and tuberculosis.
The fourth annual gathering, held recently in Alberta, was not a typical medical research meeting. One day was devoted to “land-based learning and learning from place,” explained William Wadsworth (also known as Iskotoohka), a policy analyst with First Nations Health and Social Secretariat of Manitoba Nanaandawewigamig, a co-organizer of the event. First Nations elders “shared aspects with respect to health and stories of the land,” said Wadsworth.
