Data sovereignty refers to the right of individuals, communities or governments to control how their data are collected, stored, shared and used. In health care, the term most often arises in discussions about Indigenous data sovereignty — the principle that Indigenous Peoples have the authority to govern information about their communities, including health records, genomic data, biological samples and public health information.
Historically, researchers and government agencies have collected health data from Indigenous communities without meaningful consultation, informed consent or shared decision-making. As a result, some communities have experienced misuse of their data, inaccurate portrayals in research or little direct benefit from studies that relied on their participation.
Data sovereignty seeks to address these inequities by recognizing that communities should have a central role in determining who can access their data, how the data are interpreted and whether research aligns with community priorities.