“It’s Not My Data Anymore”: Exploring Non-Users’ Privacy Perceptions of Medical Data Donation Apps
Authors: Sarah Abdelwahab Gaballah (Ruhr University Bochum), Lamya Abdullah (Technical University of Darmstadt), Ephraim Zimmer (Ruhr University Bochum), Sascha Fahl (CISPA Helmholtz Center for Information Security), Max Mühlhäuser (Technical University of Darmstadt), Karola Marky (Ruhr University Bochum)
Volume: 2025
Issue: 1
Pages: 654–670
DOI: https://doi.org/10.56553/popets-2025-0035
Abstract: This paper contributes an in-depth investigation (N=24) of privacy perceptions in the context of medical data donation apps. Medical data donation refers to the act of voluntarily sharing medical data with research institutions, which plays a crucial role in advancing healthcare research and personalized medicine. To design effective medical data donation apps, we need to understand how privacy expectations affect people's willingness to use such apps. We focus on non-users—those who have no experience with medical data donation apps—because gaining a deeper understanding of their perceptions is essential for fostering the adoption of these apps. Our findings highlight the importance of trust, transparency, and anonymity as driving factors. Participants expressed a willingness to share highly sensitive medical data with the apps if they were assured of complete anonymity, yet criticism regarding the risks of de-anonymization was also raised. Based on our results, we identify privacy awareness issues, especially concerning data sensitivity. Additionally, we explain the differences between participants' privacy expectations and preferences and what existing medical data donation apps offer. Finally, we provide guidance for the development of future user-centric medical data donation apps.
Keywords: privacy, anonymity, mental models, medical data donation apps, trust, transparency, control, data sensitivity
Copyright in PoPETs articles are held by their authors. This article is published under a Creative Commons Attribution 4.0 license.
