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Landmark genome project to advance precision health for Black communities in Canada launches in Ontario at SickKids
Summary:
The genCARE study aims to better understand why chronic diseases impact Black peoples by sequencing 11,100 genomes in Canada.
A national project to sequence the genomes of 11,100 Black peoples in Canada to better predict, prevent and manage health conditions launched this week at The Hospital for Sick Children (SickKids).
People of African descent have the most diverse genomes on the planet yet are significantly underrepresented in genomic databases. This lack of representation risks leaving Black communities unable to benefit from advancements in Precision Child Health and precision medicine.
“Genomic data has the potential to propel precision medicine forward, but it relies on comprehensive databases that reflect the genomic diversity of people,” says Dr. Upton Allen, SickKids study lead, Division Head of Infectious Diseases, Interim Head of the Transplant and Regenerative Medicine Centre and Senior Associate Scientist in the Child Health Evaluative Sciences program. “Our project lays the groundwork for more inclusive precision medicine where Black peoples can benefit from advancements in health research and care.”
The launch event on January 27, 2026 brought together representatives from SickKids, Genome Canada, the Canadian Black Scientists Network, and the Black Opportunity Fund, as well as the Hon. Dr. Jean Augustine who has since become the first participant in the study.
(left to right) Dr. Juliet Daniel, Dr. Wesley Oaks, Britta Fiander, Dr. Loydie Jerome-Majewska, Dr. Upton Allen, the Honourable Dr. Jean Augustine, Craig Wellington, Dr. OmiSoore Dryden, Dr. Carl James
Unlocking genetic insights for Black communities
A central focus of the project is uncovering genetic variants unique to Black peoples in Canada. With this information, the team hopes to enable more effective prevention and treatment strategies tailored to chronic conditions that are prevalent in Black communities, such as hypertension, adult-onset diabetes and triple-negative breast cancer.
This project will sequence the complete DNA of more than 11,000 people. Most samples (10,000) will be analyzed using standard sequencing methods (short‑read sequencing). A smaller group (1,100) will be analyzed using technology that provides even more detailed information (long‑read sequencing). Together, these approaches will create a strong foundation of data for future studies. Sequencing of the 10,000 genomes will be supported by The Centre for Applied Genomics (TCAG) at SickKids, the McGill Genome Centre in Montréal (both part of CGEn— Canada’s national platform for genome sequencing and analysis), and the Centre d’expertise et de services Génome Québec, located at the CHU Sainte‑Justine in Montréal. The Atlantic Cancer Research Institute will be a major contributor to the long‑read sequencing.
The team also plans to integrate the social and structural determinants of health to better understand how genetic risk intersects with socioeconomic factors to shape health outcomes for Black peoples in Canada.
At the core of the project is close relationships with community advisory groups to guide the research process and ensure that concerns related to data privacy, governance and cultural safety are meaningfully prioritized and addressed.
“We’re building on a foundation of trust that comes from years of collaboration, including our work with over 3,000 participants who have already partnered with us in COVID-19 research,” notes Allen. “This partnership is key to making meaningful scientific advances that benefit the very communities at the heart of our work.”
Through collaboration among team leads Drs. Loydie Jerome-Majewska at McGill University Health Centre, OmiSoore Dryden at Dalhousie University and Juliet Daniel at McMaster University, and with initial funding from Genome Canada awarded in 2025, the project is starting in Ontario will expand to include additional recruitment sites in Quebec and Nova Scotia later this year.
The genCARE project is funded by Genome Canada and other funding partners, including the Black Opportunity Fund who assisted with the January 27 launch.
Are you a member of a Canadian Black community with citizenship or permanent resident status, are aged 18 years or older and self-identify as Black?
Learn more about contributing to a transformational project to sequence 10,000 genomes from Black people in Canada.
Email gencare.project@sickkids.ca or call (416) 813-5443.