Who is sovereign and how? Informing data sovereignty initiatives beyond borders through analysis of autonomous health movements

In response to the increasing harms of large-scale data collection, a range of practices and technologies have been proposed to move towards increased data sovereignty. Broadly, data sovereignty is intended to create conditions that consider the social and collective setting in which individuals can claim control over their data, aiming to mediate between collective and individual interests when it comes to data management, generation, collection, and use. However, data sovereignty literature has rarely engaged with the question of who is included in the boundaries of a sovereign group outside of nation-states. This paper examines what binds sovereign groups together by putting data sovereignty in conversation with the operationalization of “sovereignty” in autonomous health movements. I review two historical case studies of self-managed abortions and the Black Panther Party’s organizing of free independent health clinics and identify four factors that allow autonomous health movements to maintain shared connections between their members: ideological or political identity, shared cultural or identity-based experiences, connection to place, and control over physical infrastructure. Based on this analysis, I propose ways that designers and researchers of data sovereignty can support these shared bonds of sovereignty, especially by designing culturally relevant data consent systems, redesigning data infrastructures, creating political coalitions, and navigating the blurry legal boundaries of sovereignty. This paper is as much a practical exercise in informing health data sovereignty as it is a creative exercise that thinks outside the possibilities of nation-state sovereignty to imagine how people can meaningfully manage themselves and their data.