The Silent Genomes project aims to elucidate and address the health inequities faced by Canadian Indigenous populations when accessing genomic technologies for the diagnosis of genetic diseases. In partnership with an International Indigenous Genomics Perspectives group of Indigenous scholars and leaders, the pan-Canadian Silent Genomes research team is working with Indigenous partners at the national, regional, and community levels to assess, improve, and develop genomic services and governance models for Canada’s Indigenous Peoples. Dr. Regier is leading the Activity 4 team in describing the economics of genomic diagnosis in Indigenous populations. Through collaboration with the First Nations Health Authority and consultation with Indigenous community members and health professionals, PACER is developing culturally informed qualitative methods for genomic research. These methods will be used to solicit First Nations perspectives on genomic diagnosis of rare diseases in order to explore its acceptability and estimate its preference-based value. In addition, PACER is investigating the diagnostic odyssey in terms of time, cost, and health resource utilization for First Nations and non-Indigenous children who have received services for the diagnosis of a gene-linked disease in British Columbia. The first of its kind in a Canadian pediatric population, this research will serve to describe how the magnitude and length of the diagnostic odyssey for First Nations children differs from non-Indigenous children, as well as inform the development of a policy model to evaluate the long-term cost-effectiveness of genomic diagnosis of childhood diseases.
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