Across the country, health data remains fragmented, hard to access and not fully representative, limiting the ability to deliver more precise and equitable health care: “precision health.” The Canadian Precision Health Initiative (CPHI) was launched to address this challenge by supporting new genomics research and enabling the responsible future use of the data it generates. As part of this work, CPHI is building a national database, beginning with over 100,000 genomes over four years, hosted through the Pan-Canadian Genome Library (PCGL) [1].
While most data generated through the CPHI will be part of this national database, we are taking a distinct approach to Indigenous data. Learn more below.
An essential and distinct consideration in work involving genomic or other health data is the governance of Indigenous data.
Guided by the principles of the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), Genome Canada recognizes Indigenous data sovereignty as a fundamental imperative across our work. First Nations, Inuit and Métis communities have the right to govern their own information and knowledge systems, where genomic data is understood not merely as a resource, but as a sacred connection to ancestry and future generations. This right is upheld through core principles—including OCAP® and CARE—alongside other distinctions-based and community-led frameworks. This approach ensures that genomic activity is led by Indigenous priorities, respects the integrity of biocultural heritage and is rooted in the sovereign right to self-governance over community, cultural and environmental data.
For Indigenous individuals who choose to participate in CPHI, there are three distinct data sharing options, aimed at upholding Indigenous data sovereignty and supporting Indigenous-led data governance.
Indigenous participants may choose:
Option 1) For their data to remain at the project level.
Data from Indigenous participants remains exclusively with the local research team and is not shared with any national databases. At this level, the data remains under the direct care of the project leads. All CPHI-funded projects are required to uphold the First Nations Principles of OCAP®. And all projects are required to adhere to the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – TCPS 2 (2022), including Chapter 9: Research Involving the First Nations, Inuit, and Métis Peoples of Canada.
Option 2) For their anonymized data to be added to the national CPHI database.
Data is shared with, and securely hosted by, the national Pan-Canadian Genome Library (PCGL) for research and clinical use. Before data is shared with the PCGL, all First Nations, Inuit or Métis identifiers are removed to ensure the data is not directly identifiable.
Option 3) For their data to be added to an Indigenous-governed database.
Data is shared with, and securely hosted by, Indigenous Background Variant Library (IBVL), which is an Indigenous-governed component of the PCGL, overseen by the Silent Genomes Project (SGP)-IBVL Governance Committee. This library exists to provide Indigenous genomic reference data to improve diagnosis and support research to improve the health of First Nations, Inuit and Métis communities. As such, Indigenous identifiers are kept with the data to ensure it is relevant and useful for Indigenous people.
Genome Canada welcomes, and continues to explore, additional Indigenous data governance options for data generated through the CPHI. Any new data sharing options would be available to participants in future phases of the initiative.
Indigenous CPHI participants may opt for their data to be added to both the PCGL and IBVL databases. In this case, identifiers are removed for the national library (PCGL) but are retained for the Indigenous-governed library (IBVL) to respect the different roles and governance of each resource.
Lessons and priorities as we advance the CPHI
Genome Canada recognizes that national research program structures, timelines and the broader research environment shape how effectively Indigenous data sovereignty can be upheld in practice—and that these systems remain imperfect.
Indigenous communities hold diverse priorities and perspectives related to research and data, including approaches that exist within and outside the scope of initiatives such as CPHI. Recognizing this reality, our intention in advancing the initiative, and other data governance and coordination, is to support and invest in Indigenous-led approaches to data governance, to strengthen dialogue and coordination with Indigenous leadership and communities, and to work intentionally to mitigate potential harm through program design and implementation.
Since the launch of CPHI, important considerations have emerged regarding how Indigenous governance, leadership and consent are reflected across the initiative. One of the central concerns raised since the initiative’s launch is that Indigenous governance, leadership and consent cannot be treated as secondary or deferred elements without risking the reproduction of extractive research practices. We agree and recognize gaps in our approach, requiring course correction, which we are undertaking.
Key considerations:
While the CPHI has affirmed a commitment to the Principles of OCAP® and UNDRIP, meeting these commitments requires clearer, earlier and more sustained dialogue with Indigenous leadership and communities, including national and regional organizations.
We also recognize the complexities of launching a research initiative while key program elements—including consultation, co-development and governance design—are still evolving in parallel and being balanced against funding and research timelines. In CPHI, for example, key aspects of data governance, including those related to Indigenous data, were first addressed at the level of individual projects and data infrastructure,[2] rather than through a fully articulated, initiative-wide framework. That framework continues to be developed through ongoing discussion and collaboration across a complex data and research ecosystem. We understand the need to allow more time to address core governance considerations and are working to build greater flexibility into future phases of the initiative. We are also committed to strengthening coordination and trust with the many communities impacted by the initiative:
- More transparent communication on the development process and considerations for data governance.
- Deeper and earlier engagement with Indigenous leaders and communities as noted above.
- Increasing opportunities to share new ideas and perspectives with the initiative.
Indigenous data sovereignty is one of the most consequential governance questions relating to genomic and broader data ecosystems. We welcome all feedback and critique received so far on the initiative, and we invite ongoing discussion and new collaboration to strengthen the CPHI further.
To connect with a member of our team about the Canadian Precision Health Initiative, please contact Étienne Richer.
[1] The Pan-Canadian Genome Library (PCGL) stores genomic research data from studies whose participants have consented to secure data storage and sharing for future research. Operating as a national public library, the PCGL preserves and facilitates responsible access to Canadian genomic data through both open and controlled access mechanisms, with the aim of advancing scientific discovery and improving health outcomes. The PCGL receives funding from Genome Canada through the Canadian Precision Health Initiative.
[2] The Pan-Canadian Genome Library (PCGL) has established an Indigenous Genetics Circle (IGC) as a core component of its governance framework to ensure genomic data is managed respectfully and securely. Comprising Indigenous Elders, Knowledge Keepers, community members and international experts, the IGC provides strategic oversight on policies and procedures. Their role is to ensure that data access and research frameworks consistently align with cultural priorities, consent and the principles of Indigenous data sovereignty.