The Silent Genomes Project, based at the BCCHR Institute, and in partnership with the FNHA is addressing equity in genomic diagnosis for Indigenous children with undiagnosed genetic conditions. An important gap contributing to inequity is the lack of genomic reference data from Indigenous people within publicly available databases. Having appropriate reference data is an important step in enabling efficient and accurate diagnoses for anyone with a genetic condition. The Silent Genomes Project team will describe efforts to address this gap-and will discuss the how Indigenous people of BC can participate in this effort. Importantly, Indigenous children with Genetic disease need the same opportunity for a diagnosis to focus the management of their disease as any other child does. Through an Indigenous lens, the Silent Genomes Project team is working to build the infrastructure to provide this opportunity.
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About the Presenters:
Dr. Nadine Caron, co-project leader and team lead, activity 1; Anishnawbe from Sagamok First Nation in Ontario
Nadine Caron currently resides in Prince George, BC where she provides surgical oncology care for those that call rural and remote Canada home. Nadine is also an associate professor in the UBC Faculty of Medicine’s Department of Surgery where she teaches in the Northern Medical Program. During her surgical residency, Nadine completed a Master’s in Public Health from Harvard University and was awarded UBC’s Top Student Award. Nadine is also appointed as an Associate Faculty member of the Bloomberg School of Public Health, Johns Hopkins University where she teaches for the Center for American Indian Health. Nadine is Anishnawbe from Sagamok First Nation. Her work involves a variety of audiences and knowledge users including governments, provincial health authorities, national medical organizations, health research funding bodies, and several universities to achieve identified and overlapping objectives. In 2014, she was appointed Co-Director of the UBC Centre for Excellence in Indigenous Health located at UBC’s School of Population and Public Health. … read more
Dr. Laura Arbour, project leader, clinical geneticist;
Dr. Laura Arbour is a Professor in the Department of Medical Genetics situated at the UBC Island Medical Program, and an Affiliate Professor in the Division of Biomedical Sciences at the University of Victoria. Her clinical practice and research focuses on northern and Indigenous health issues as they pertain to genetics. Trained as both pediatrician and clinical geneticist (McGill University), her research integrates maternal-child health issues and the study of rare genetic conditions in Indigenous persons, families and communities. She leads the Community Genetics Research Program situated at the University of Victoria, and works with First Nations and Inuit partners on several projects… read more
Laurie Montour, Kanien’kehaka, and Indigenous Community Engagement Coordinator
Laurie is an Indigenous biologist working for indigenous communities. Her work has to be pragmatic; it has to withstand tough questions about the purpose of research, its benefits and costs. It has to take into account community life and cultural practices, family relations and politics. Laurie was born and raised in the Mohawk Territory of Kahnawake. Laurie believes that the Silent Genomes Project is truly looking seven generations ahead to protect our unborn, while building tools and human capacity to take care of the gift transferred to us by our ancestors. The challenge is to stay grounded, and to make sure this project is done properly so at the end of the day, our people have equitable access to the best health care.
- Website at – Silent Genomes Project
- More information – Silent Genomes information Booklet
- Our past Silent Genome Session – https://learningcircle.ubc.ca/2019/03/12/april-11th-2019-the-silent-genomes-project/