Genome Canada welcomes the opportunity to strengthen dialogue and coordination with the Assembly of First Nations (AFN) and other Indigenous leaders following the adoption of Resolution #11 at the AFN Annual General Assembly, Sept. 3-5, 2025. The resolution raises concerns about genomic data governance related to the Canadian Precision Health Initiative (CPHI) and other genomic data initiatives.
We are supportive of the resolution’s aims to safeguard First Nations data sovereignty and to steer genomic research and data initiatives away from long-standing, harmful and exploitative patterns of data extraction rooted in colonialism.
The issues tabled are of vital importance, including the need for formal governance and consent mechanisms to uphold Indigenous rights and genomic data sovereignty.
We fully respect the sovereignty of individual First Nations communities and their right to make independent decisions regarding participation in genomic initiatives, including decisions on data access and governance. While the CPHI has affirmed a commitment to the OCAP® principles and the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), we recognize that clear, early communication and coordination with Indigenous leadership, including the AFN, is needed to meaningfully meet these commitments and address the ongoing harm enacted through colonial research and health practices.
Genome Canada has shared with the AFN policy lead for this resolution our commitment to working with the Assembly and other Indigenous leaders to co-develop formal mechanisms for data governance and accountability—upholding Indigenous data sovereignty—within the CPHI and other new data initiatives.
As we build out the CPHI, laying groundwork to establish robust and ethical data governance through the initiative, our primary goal is to fuel health-care solutions that save and improve lives. We recognize that ensuring those benefits are experienced widely and tangibly requires deep collaboration and co-creation. And we are firmly committed to upholding the fundamental rights and sovereignty of Indigenous Peoples over their genomic data in pursuing this goal.
We thank the AFN for their leadership and engagement on these critical issues.