For years, patients at a Toronto community clinic have described a familiar frustration: a health system that often treats everyone the same, even when their lives, risks and realities are not. That frustration sits at the centre of a new national research effort that hopes to change how Black Canadians are diagnosed and treated.

Beginning Feb. 1, scientists in Ontario, Quebec and Nova Scotia will launch genCARE, a large-scale genomic study focused on Black Canadians. The project will collect genetic information from more than 10,000 participants, including people living with Type 2 diabetes, hypertension and triple-negative breast cancer. The aim is to understand why these conditions disproportionately affect Black communities and how care can be better tailored.

The initiative is funded by Genome Canada. Cheryl Prescod, executive director of the Black Creek Community Health Centre in Toronto’s Jane and Finch area, says gaps in medical data are felt daily by patients who struggle to find care that reflects their experiences.

“If we are not there, we will not be counted,” Prescod said. “We will not be involved in finding solutions.”

Prescod estimates that less than five per cent of genetic studies worldwide include data from Black people, a shortfall that limits how useful research findings are for diagnosis and treatment.

Dr. Upton Allen, the project’s administrative lead, says the long-term objective is precision medicine. “It might help us to better

understand why certain people get these disorders, why some get it more severe than others,” said Allen. “It might even help us to better design treatments that are more targeted.”

Recruitment, however, poses a challenge. Allen says historical and ongoing discrimination has fuelled deep mistrust of medical institutions among many Black Canadians.

That mistrust was visible during the COVID-19 pandemic. Ivan Ho, a diabetes educator and registered dietitian at the centre, says many clients carry memories of bias into every medical interaction. “A lot of clients have experienced prejudice and bias in the past and they kind of carry that with them,” he said.

Ho noted that conditions like diabetes are often wrongly reduced to personal lifestyle choices. “The prejudice might be, ‘Oh, that person is not living a healthy lifestyle, they’re not willing to change,’” he said.

Dr. Gavin Oudit, a cardiology professor at the University of Alberta who is not involved in genCARE, said the project addresses a known flaw in genetic testing. “Quite often, when we look at patients of Black or Indigenous background, the genetic testing results are negative,” he said. “It’s not complete, it’s deficient.”

GenCARE researchers say DNA data will be anonymized and stored securely in Canada, with findings shared back with communities. Prescod recalls that during the pandemic, trust grew when community ambassadors went door to door to explain health initiatives.

Participants will be recruited through community health centres, doctors’ offices and hospitals. Prescod acknowledges the benefits may not be immediate but believes the impact could span generations.

“But it’s never too late,” she said.