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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.
Researchers have launched a project to collect samples from 10,000 Black Canadians to study their genomes, with the goal of better understanding why some people get certain medical disorders.
“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.”
Overcoming mistrust
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.
For example, he said, some people believe diabetes is strictly a result of lifestyle choices.
“The prejudice might be, ‘Oh, that person is not living a healthy lifestyle, they’re not willing to change,’ ” Ho said.
In reality, he says, there are many underlying factors beyond a person’s control — like a lack of stable housing or food insecurity — that can contribute to negative health outcomes.
A remedy for deficient databases
Dr. Gavin Oudit, a professor of cardiology at the University of Alberta who is not involved in genCARE, called it an important initiative to make better predictions of disease and to improve diagnosis and treatment.
“Quite often, when we look at patients of Black or Indigenous background, the genetic testing results are negative,” he said, noting that’s not usually the case for patients of Caucasian backgrounds.
He says this is partly because the genomic databases they’re using for comparison are not accurate as they don’t contain enough data from racialized people.
“It’s not complete, it’s deficient.”
Research shows Black Canadians are more likely to be diagnosed with certain conditions like Type 2 diabetes, but the demographic has been left out of crucial research. A new genome project is addressing this gap.
In order to get that data, the researchers know they need to build trust with people and avoid perpetuating harm. To do this, they say they will anonymize DNA data from participants, holding it securely in Canada and sharing the information that results from the studies with community members at events like town halls.
Prescod recalled working with Allen during the COVID pandemic when they turned to community ambassadors who live in the many high-rise buildings in the neighbourhood near the clinic to offer outreach, promote health-care services and distribute information, which helped to build trust.
“They actually come into the community, they speak with folks to help them understand the purpose of the research and why they should participate,” Prescod said.
Allen says participants will be recruited from community health centres like Black Creek, as well as doctors’ offices and hospitals. The next part of the project will expand to include children.
Though Prescod knows the potential solutions the genCARE project might provide aren’t likely to benefit participants immediately, she says they could eventually help their children and grandchildren.
“I wish that this could have happened earlier … because it would impact even myself,” she said. “But it’s never too late.”
