Health data sovereignty: pinpointing conceptual ambiguities

Timmermann, Cristian, Atenas, Javiera, Jansky, Bianca, Van Hoof, Wannes and Ursin, Frank (2026) Health data sovereignty: pinpointing conceptual ambiguities. Frontiers in Digital Health, 8. ISSN 2673-253X

[thumbnail of fdgth-8-1820189.pdf]
Preview
Text
fdgth-8-1820189.pdf - Published Version
Available under License Creative Commons Attribution.

Download (1MB) | Preview

Abstract

Collection of health data has increasingly become central within healthcare and public health, and various actors such as clinicians, researchers, policymakers and patients are increasingly voicing claims to being able to responsibly control data. In this context, the concept of health data sovereignty (HDS) has had highs and lows in bioethics and policy discussions over the years without being either fully discarded or established. We argue that while there is a persistent discussion on defining the underlying concepts of “health” and “data”, the real hurdle in the widescale adoption of the concept of HDS in research and policy lies in substantial disagreements on the scope and implications of the concept of sovereignty. We argue that before the concept of HDS can have a meaningful impact, we need to clarify five issues: (1) lack of consensus over who should claim sovereignty, (2) the public goods problem of sovereignty, (3) reliably maintaining sovereignty, (4) the need to protect the reasonable interests of all stakeholders, and (5) the links between solidarity and sovereignty. In mapping these conceptual challenges and the tensions between them, we hope to ignite new policy efforts and community-level grassroots initiatives towards HDS based on ethical deliberations.

Item Type: Article
Uncontrolled Keywords: digital bioethics, digital infrastructure, governance, public goods, self-determination, solidarity
Subjects: R Medicine > RA Public aspects of medicine
R Medicine > RZ Other systems of medicine
Divisions: The School of Business, Arts, Social Sciences and Technology
Depositing User: Javiera Atenas
Date Deposited: 07 Sep 2026 10:21
Last Modified: 07 Sep 2026 10:32
URI: https://oars.uos.ac.uk/id/eprint/5694

Downloads

Downloads per month over past year

Origin of downloads

Actions (login required)

View Item
View Item