Why do 3 major diseases disproportionately impact Black Canadians? New genome project aims to find out

In her 10 years as a health-care administrator, Cheryl Prescod has seen firsthand the ways Black Canadians can feel left behind by the blanket approach sometimes taken by the country's health-care system.

As executive director at the Black Creek Community Health Centre in Toronto's Jane and Finch neighbourhood. Prescod serves a diverse clientele, including a large proportion of Black and racialized individuals — people who say it can be difficult to access health care that makes them feel safe and culturally respected. 

Black people are disproportionately impacted by certain diseases, including Type 2 diabetes, hypertension and an aggressive form of breast cancer known as triple-negative. Starting on Feb. 1, researchers from Ontario, Quebec and Nova Scotia are launching the genCARE project to map the genomes of more than 10,000 Black Canadians with these three diseases, as well as people who have no underlying medical conditions.

The leaders of the project — funded by Genome Canada — hope their findings will help inform where treatment and preventive care can be targeted, as well as achieve more equitable, anti-racist health outcomes.

"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, which means the findings of those studies may not apply to them.

Prescod hopes the research results will allow her to help her patients at Black Creek better manage their conditions.

The ultimate goal of genCARE, according to Dr. Upton Allen, the project's administrative lead, is to take a patient's genetic makeup and other factors into consideration during diagnosis and treatment — a practice known as precision medicine.

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

Allen says researchers involved with the project must overcome a long history of discrimination against Black people that has fuelled their mistrust of medical institutions.

And that makes recruitment difficult in a project that he says needs thousands of participants.

"This is the only project of its kind that is focused on Black peoples in Canada," said Allen, who is also the head of infectious diseases at Toronto's Hospital for Sick Children and a professor of pediatrics at the University of Toronto.

Allen also partnered with Black Creek Community Health Centre during the COVID-19 pandemic, when some members of Black communities expressed hesitancy about the vaccine and didn't trust the health-care system due to systemic discrimination.

"A lot of clients have experienced prejudice and bias in the past and they kind of carry that with them," said Ivan Ho, a diabetes educator and registered dietitian at the health centre.