{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T22:13:49Z","timestamp":1776118429291,"version":"3.50.1"},"reference-count":0,"publisher":"Privacy Enhancing Technologies Symposium Advisory Board","issue":"1","license":[{"start":{"date-parts":[[2025,1,1]],"date-time":"2025-01-01T00:00:00Z","timestamp":1735689600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["PoPETs"],"abstract":"<jats:p>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\u2014those who have no experience with medical data donation apps\u2014because 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.<\/jats:p>","DOI":"10.56553\/popets-2025-0035","type":"journal-article","created":{"date-parts":[[2024,11,10]],"date-time":"2024-11-10T19:21:16Z","timestamp":1731266476000},"page":"654-670","source":"Crossref","is-referenced-by-count":2,"title":["\u201cIt\u2019s Not My Data Anymore\u201d: Exploring Non-Users\u2019 Privacy Perceptions of Medical Data Donation Apps"],"prefix":"10.56553","volume":"2025","author":[{"given":"Sarah Abdelwahab","family":"Gaballah","sequence":"first","affiliation":[{"name":"Ruhr University Bochum"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lamya","family":"Abdullah","sequence":"additional","affiliation":[{"name":"Technical University of Darmstadt"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ephraim","family":"Zimmer","sequence":"additional","affiliation":[{"name":"Ruhr University Bochum"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sascha","family":"Fahl","sequence":"additional","affiliation":[{"name":"CISPA Helmholtz Center for Information Security"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Max","family":"M\u00fchlh\u00e4user","sequence":"additional","affiliation":[{"name":"Technical University of Darmstadt"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karola","family":"Marky","sequence":"additional","affiliation":[{"name":"Ruhr University Bochum"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"35752","published-online":{"date-parts":[[2025,1]]},"container-title":["Proceedings on Privacy Enhancing Technologies"],"original-title":[],"deposited":{"date-parts":[[2024,11,13]],"date-time":"2024-11-13T19:21:01Z","timestamp":1731525661000},"score":1,"resource":{"primary":{"URL":"https:\/\/petsymposium.org\/popets\/2025\/popets-2025-0035.php"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1]]},"references-count":0,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,1]]}},"alternative-id":["10.56553\/popets-2025-0035"],"URL":"https:\/\/doi.org\/10.56553\/popets-2025-0035","relation":{},"ISSN":["2299-0984"],"issn-type":[{"value":"2299-0984","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1]]}}}