Silent Genomes Project
Reducing health care disparities and improving diagnostic success for children with genetic diseases from Indigenous populations
“The Indigenous Peoples of Canada face unique health challenges, inequities, and barriers to health care and typically have poorer health outcomes than non-Indigenous groups. While leading-edge genomic technologies are becoming routinely available to other Canadians, Indigenous people often have little or no access to these technologies, increasing the health disparity gap. Silent Genomes is a game-changing effort to address this inequity, by bringing life-changing genomic diagnosis to children while ensuring Indigenous-led governance over biological samples and health data.”
Laura Arbour, MD, MSc, MSc, FRCPC, FCCMG (Project Lead)
Nadine R. Caron, MD, MPH, FRCSC (Co-Lead)
Wyeth W. Wasserman, PhD (Co-Lead)
Genomics (the study of the complete set of human genes) has advanced health care by allowing medical treatments to be tailored to the specific needs of individual patients (‘precision medicine’). 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. This has created a ‘genomic divide’, a key component of which is the lack of background genetic variation data for Indigenous populations. This prevents accurate diagnosis, because reference data are needed when multi-gene and exome (entire genome) testing panels are used. Notably, these genomics resources are silent with respect to First Nations (FN), Inuit and Métis peoples (collectively our Canadian Indigenous populations).
Silent Genomes will address the genomic divide by reducing access barriers to diagnosis of genetic disease in Indigenous children. With our First Nations, Inuit and Métis partners we will:
- Establish processes, through an Indigenous lens, for safe governance of biological samples and genome data in the Silent Genomes project, which will lead to broader policy.
- Address barriers to accessing genetic/genomic health care and bring genomic testing to at least 200 Indigenous children with suspected genetic disorders.
- Develop an Indigenous Background Variant Library (IBVL) of genetic variation from a diverse group of 1500 FN Canadians and assess improvement in diagnosis for referred children.
- Assess effectiveness of the IBVL to lower health care costs and plan for long term use of IBVL for Canadian Indigenous children and adults needing genetic/genomic health care.
Silent Genomes Project
Medical Sciences Building
University of Victoria
PO Box 1700 STN CSC
Victoria, BC V8W 2Y2
1-888-853-8924 (ext. 2)
- Statement on the Missing Children of Canada’s Indian Residential Schools
We, as the non-Indigenous members of the Silent Genomes team, would like to express to the Indigenous members of the team, our Indigenous partners, patients, and community members our overwhelming devastation and deepest condolences as we hear the repeated news of the findings of the remains of countless children in unmarked graves on the grounds of residential schools. We stand with all of you with the knowledge that these discoveries are only one heart-breaking example of the realities that were part of the 130 year legacy of residential schools in Canada, and only one aspect of history contributing to ongoing systemic racism. We commit to continuing to work in partnership to address the inequities in health care and other disparities that have arisen from our history of Indigenous-specific systemic racism.
Indian Residential School Survivors: If you are in need of support, please reach out: IRSSS Toll-Free Line: 1-800-721-0066 24hr National Crisis Line: 1-866-925-4419 KUU-US Crisis Line: 1-800-588-8717 Tsow-Tun-Le Lum: 1-888-403-3123