First Nations, Inuit and Metis populations, collectively known as the Indigenous Peoples of Canada, face similar health challenges with global Indigenous Peoples. Inequities include access barriers to health care that produce poorer health outcomes compared to non-Indigenous groups.
The ‘genomics revolution’ has the potential to widen the health inequities gap. Compared to what is becoming routinely available to other Canadians, Indigenous populations often have little or no access to genomic technologies and the research that drives them, hence intensifying the ‘genomic divide’.
A key concern in the growing genomic divide is the lack of background genetic variation data for Indigenous populations living in Canada and globally. This prevents accurate findings because of the lack of reference data needed for precise genetic diagnosis. Notably, standard genomics resources are silent with respect to First Nations, Inuit and Metis. The Silent Genomes project will address the genomic divide by reducing access barriers to diagnosis of genetic disease in Indigenous children.
Silent Genomes is a partnership with First Nations, Inuit and Metis Peoples that will:
- establish processes for Indigenous governance of biological samples and genome data,
- lead to policy guidelines and best practice models, bringing equitable genomic testing to Indigenous children in Canada with suspected genetic diagnosis, and
- develop an Indigenous Background Variant Library of genetic variation from a diverse group of First Nations in Canada.
Drs. Laura Arbour and Nadine Caron of the University of British Columbia and Dr. Wyeth Wasserman of BC Children’s Hospital Research Institute will work to narrow the gap by creating a system in which Indigenous Peoples can oversee their own genetic data, enhancing equitable access to diagnosis, treatment, and care. This work aims to improve health outcomes related to genetic disease, while assessing cost effectiveness of precision medicine.