HALL Member Cong Yao presented the working paper Opt-Out as Conditional Privilege: The EHDS Secondary Use Architecture, Architectural Discrimination, and the Fourth Level Digital Divide at Privacy Law Scholars Conference (PLSC) Europe 2026, held at KU Leuven on 29–30 October 2026, and received the conference's Top Policy Provocation Award — a recognition given to papers most likely to make policymakers think, and potentially act. This marks the second time the award has gone to researchers in the HALL and LSTS Research Group.
The paper examines the right to opt out of secondary use of health data under the European Health Data Space. While the right is universal in law, the Regulation asks only that the opt-out mechanism be "accessible and easily understandable." It says nothing about whether a non-digital route must exist, nor does it provide any baseline requirement at the EU level. As a result, the right belongs, in practice, to whoever can already use it. The paper argues that a formally universal data right can be substantively unequal — and that when those who cannot exercise it are the same people already underrepresented in health research, the cost is not only theirs.
The paper remains a working draft; further detail will be available in the published version.