First Nations Feasibility Study on Biobanking and Genomic Research

First Nations in Canada are underrepresented in biobanks and genomic research. The lack of participation in biobanks and genetic research can be attributed to a long-standing history of unethical biological sampling in Indigenous communities. First Nations have raised concerns regarding failures to obtain appropriate consent, lack of benefits to the communities, misuse of blood and tissue samples, and the inappropriate storage and ownership of biological samples. First Nations are missing out on the potential benefits, such as early detection and diagnosis, that can result from this type of research. This is particularly concerning given that First Nations continue to be disproportionately affected by diseases and illnesses. While biobanks and genomic research may be beneficial to First Nations, there is a need to identify clear guidelines and protocols that are culturally relevant and can be easily adapted by First Nations to lead and engage in biobanking in accordance with their interests and rights of data sovereignty. The First Nations Information Governance Centre (FNIGC) in collaboration with its regional partners will strengthen First Nations in their capacity to engage in genomic research and biobanking activities through a series of knowledge-sharing and regionally-driven engagement sessions. Guided by a First Nations Advisory Circle, this three-year project will increase the understanding of the relevance and priority of biobanking and genomic research for First Nations communities and inform the development of a First Nations-led governance and ethical framework. Through this project, FNIGC will develop tools and information First Nations need to govern and control biobanking activities and genomic research in their communities.