Jamaicans lead major project to deliver better healthcare outcomes for black Canadians

A national groundbreaking project to provide genomic evidence for precision medicine for select chronic diseases among black people in Canada has been launched in Toronto. Its goal is to help create better healthcare that meets the needs of black Canadians.

Among the leaders of ‘The genCARE Project’ are Jamaicans Dr Upton Allen, professor of paediatrics at The Hospital for Sick Children (SickKids), University of Toronto; and Dr OmiSoore Dryden, Tier 1 Canada Research Chair in Black Health Studies at Dalhousie University in Halifax, Nova Scotia.

Dr Loydie Jerome-Majewska, an expert in developmental genetics and congenital disorders at McGill University, and Dr Juliet Daniel of McMaster University, who specialises in cancer genetics and molecular biology, are the other leaders of this sequencing project.

“At its core, genCARE was born out of a simple but real reality, a powerful one, that black people have been historically under-represented in genomic research across Canada, in fact, internationally. As a result, when advances in medical care driven by precision medicine occur then these populations are often left behind,” said Allen at the SickKids Peter Gilgan Centre for Research and Learning in Toronto on January 27.

He said when these data are incomplete it means care might be less precise, less effective and inequitable.

“In this context, precision medicine then is an approach to healthcare that utilises one’s genes, the environment, and personal characteristics to come up with a more tailor-made package of understanding the onset, the genesis of disease, improved diagnosis, prevention and treatment. So, it becomes more targetted to the individual or the population.”

Focus on chronic conditions

Allen said it helps to move away from a one-size-fits-all approach to a more-focused-best-strategy. They plan to sequence over 10,000 genomes from black people across Canada, starting with Ontario, Nova Scotia and Quebec.

The researchers will focus on chronic conditions that are prevalent disproportionately within the black community such as hypertension, adult-onset diabetes, and triple-negative breast cancer. Also included will be individuals who have other medical conditions, as well individuals who are completely well.

Allen, who is administrative lead of the project, said they need the full spectrum of entities including so-called normality.

“We want genCARE to be grounded in community engagement and transparency. We want to ensure that the work is not done on the community, but with the community,” he said.

Allen also said it will be important for them to follow best practices relating to research ethics, informed consent, transparency, privacy, confidentiality and data governance.

The project was developed in close collaboration with The Centre for Applied Genomics at SickKids and the McGill Genome Centre in Montreal, part of the CGEn network, Canada’s national platform for genome sequencing and analysis, which will do the bulk of the sequencing.

While acknowledging the funding from Genome Canada, Genome Atlantic, Ontario Genome, Genome Quebec, and others, Allen thanked the Black Opportunity Fund for its commitment to funding.

He said the hope is that genCARE will help to lay the foundation for a future in which precision medicine in Canada truly reflects the diversity of its people.

Jamaican-Canadian Craig Wellington, chief executive officer at Black Opportunity Fund, described the project as a gamechanger addressing an example of a long-term systemic issue that the Fund is trying to address which will have longstanding impact.

Wesley Oakes, of Genome Canada, said from the start the Canadian Precision Health Initiative was a massive undertaking with a CDN$200-million investment brought together by partners across industry, academia, and the public sector to build resource that actually reflects the diversity of Canada.

He said it was ambitious in its scale and timeline but its real heart lies in its vision, a belief that by building a resource of ancestrally diverse genomes “we could create a powerful tool to finally tackle deep health inequities across Canada”.

Said Oakes, “genCARE is the ultimate expression of this vision. It may very well represent the largest single research investment in black health in Canadian history.”

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