U of T professor co-leads Genome Canada-funded project to advance precision medicine for Black Canadians

Upton Allen, a professor of paediatrics at the University of Toronto’s Temerty Faculty of Medicine, is part of a research team that has been funded by Genome Canada to support the development of precision medicine approaches tailored to Black populations in Canada. 

Called the genCARE project, researchers will sequence 10,000 short-read genomes and 1,100 long-read genomes to explore why certain chronic illnesses, specifically hypertension, adult-onset diabetes and triple-negative breast cancer, disproportionately affect Black Canadians. A second goal is in enhance the representation of genomes from persons of African ancestry with Canadian databases. 

The project has been approved for a total budget of $17.7 million for up to four years. 

“We believe this work is pivotal to the realization of the dream of personalized medicine, where it is not a one-size-fits-all approach,” says Allen, division head of infectious diseases at the Hospital for Sick Children. 

Along with Allen, the multi-institutional research group of co-leads includes: Loydie Jerome-Majewska, professor of paediatrics at McGill University and co-founder of the Canadian Black Scientists Network (CBSN); Juliet Daniel, professor in the department of biology at McMaster University and CBSN co-founder; and OmiSoore Dryden, professor in the department of community health and epidemiology at Dalhousie University. 

The long-standing gaps of race-based data in Canadian health research limits the ability to understand, prevent or treat major health conditions effectively. The collection of short-read genomes offers accurategene analysis and is commonly used for large-scale projects. Meanwhile, long-read sequencing provides researchers with a more complete picture of variant detection. This data will help researchers identifygenomic markers linked to the three diseases, as well as the range of severity associated with those markers.  

Importantly, the research team will explore the potential influences of the social determinants of health that might interact with those genetic markers. This is critical, Allen adds, because historical systemic inequities have left Black Canadians underrepresented in research and underserved in the health-care system.  

“These types of research projects have typically not been designed in ways that facilitate the inclusion of various communities, including Black communities,” Allen says. “There’s also an issue of trust in the health-care system and concerns about how data may be handled. We’re hoping to change that.” 

In Ontario, the team is building on partnerships made during the COVID-19 pandemic with Black communities, advisory groups, churches and diaspora organizations, particularly in the Greater Toronto Area. With a cohort of more than 3,000 participants re-contacted from previous COVID-19 studies, the team is currently looking to leverage additional partnerships to advance the project. 

“We need to work with communities to help them understand the importance of the data being collected, even though there are valid reasons for hesitation due to historical injustices,” Allen says. 

The project will also focus on collecting genetic data in Black Nova Scotian communities. With a more than 400-year history in Canada, there remains a significant lack of research focused on their specific health experiences and needs. 

“We don’t know the extent to which any data that are being generated relating to Black communities of African ancestry apply to Canada, simply because those data have not been generated among Canadians,” Allen says. 

“For the Black community to optimally benefit from personalized medicine, we must have this data.”