November 25, 2025
What happens when the right test exists, but the relevant reference data doesn’t? For too many Indigenous people in Canada, a rare disease goes undiagnosed — not because medicine lacks the tools, but because those tools weren’t built with them in mind. The Silent Genomes Project set out to change that.
In partnership with Indigenous researchers and communities, Silent Genomes launched the Indigenous Background Variant Library in early 2025. This secure, Indigenous-governed genomic resource was designed to enhance diagnostic accuracy and improve health outcomes for Indigenous patients. The library already contains 597 sequenced samples and is in use by 75 registered users across 14 health centres — and it continues to grow.
An Indigenous Governance Committee provides stewardship, ensuring data use aligns with community values and supports clinical care. The project has drawn international attention, with features on Radio-Canada Découverte and TV5MONDE, reaching audiences in over 420 million homes.
Silent Genomes is more than a project — it’s a rebalancing of power in genomic medicine. And it’s proving what’s possible when trust, science and sovereignty come together.
This article appears in Genome BC’s 2024/25 Annual Report. View the whole report here.
