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AIDS 2026: Defining Indigenous Data Sovereignty as a Determinant of Health

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Released: September 14, 2026

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At AIDS 2026, I found myself pondering a deceptively simple question: Who governs knowledge about Indigenous peoples? For decades, Indigenous peoples in Canada have participated in HIV research, yet have not been given a voice in research planning, analyses, or decision-making. Here, I discuss why I believe Indigenous data sovereignty must be understood as a determinant of health, rather than just a research ethics issue. 

Randall Jackson
Randall Jackson, PhD
AIDS 2026 Indigenous Data Sovereignty

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At AIDS 2026 in Rio de Janeiro, I found myself returning to a deceptively simple question: Who governs knowledge about Indigenous peoples? 

For decades, Indigenous peoples in Canada have participated in HIV research. We have completed surveys, donated blood, shared stories, and allowed our lives to become datasets. Yet too often, key research questions are still determined elsewhere, the analyses occur elsewhere, and the findings only return to communities long after decisions have already been made.

Indigenous Data Sovereignty
This is why I believe Indigenous data sovereignty must be understood as more than a research ethics issue. It is a determinant of health. 

The connection is direct: Governance influences trust; trust influences engagement; and engagement influences testing, prevention, treatment, retention in care, research participation and health policy legitimacy. When Indigenous peoples lack authority over the knowledge produced about them, they also lose influence over the services, priorities and futures that this knowledge helps create.

Canada has provided important foundations to establish how Indigenous peoples’ data and information will be collected, protected, used, or shared, including the First Nations Principles of Ownership, Control, Access, and Possession (OCAP), alongside international developments such as the CARE Principles for Indigenous Data Governance. But the next step must move beyond protecting data and toward governing knowledge systems themselves. Indigenous communities should have authority over what questions are asked, what data are collected, how they are interpreted, who can access them, how they may be reused, and how knowledge returns to strengthen community.

Data Sovereignty and Structural Barriers to Health
AIDS 2026 made clear why this matters now. HIV systems are becoming increasingly digital, predictive, and AI enabled. Data shape surveillance, funding, program targeting, clinical decision support and policy evaluation. If Indigenous peoples enter these systems only as categories of risk, the technologies may simply accelerate older forms of extraction. If Indigenous peoples govern the systems, however, data can become infrastructure for self-determination.

There is also a relational dimension that HIV systems too often miss. We measure reach, retention and results, but relationships are frequently treated as context rather than infrastructure. For Indigenous communities, trust, continuity, accountability and the relationships among people, services, lands and institutions are part of how health is produced. Governance without relational accountability risks becoming another administrative exercise.

This also changes what we mean by HIV success. Viral suppression, PrEP uptake and retention in care remain essential. But they are not the whole story. Indigenous communities may also ask whether care strengthens relational wellbeing, cultural safety, belonging, continuity, autonomy and community-defined forms of flourishing. 

None of this requires rejecting biomedical science. HIV treatment, PrEP, HIV-1 RNA monitoring, and new long-acting technologies save lives. The question is not whether biomedical science works. The question is who governs how it enters Indigenous lives.

Authority, Not Just Inclusion
For me, that was one of the most important lessons of AIDS 2026. The future of the Indigenous HIV response in Canada cannot be defined simply by better inclusion in existing systems. It must be defined by greater Indigenous authority over research, data, implementation, and the measures by which success is judged.

Indigenous Data Sovereignty is about rights and governance, but it is also ultimately about health, and about creating the conditions for Indigenous peoples to determine our own healthy futures.

Your Thoughts
What are some practical ways you think data sovereignty could be better incorporated into clinical trials for minority groups? How is Indigenous data sovereignty similar or different to past efforts to include the voices of people living with HIV and LGBTQIA+ people in discussions of HIV prevention and care? Leave a comment to join the discussion!

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