A preregistered vignette experiment on determinants of health data sharing behavior: Willingness to donate sensor data, medical records, and biomarkers

Silber, Hennnig ; Gerdon, Frederic ; Bach, Ruben L. ; Kern, Christoph ; Keusch, Florian ; Kreuter, Frauke

DOI: https://doi.org/10.1017/pls.2022.15
URL: https://www.cambridge.org/core/journals/politics-a...
Additional URL: https://www.researchgate.net/publication/363579320...
Document Type: Article
Year of publication Online: 2022
The title of a journal, publication series: Politics and the Life Sciences : PLS
Page range: 1-21
Place of publication: Cambridge
Publishing house: Cambridge University Press
ISSN: 0730-9384 , 1471-5457
Publication language: English
Institution: Außerfakultäre Einrichtungen > Mannheim Centre for European Social Research - Research Department A
School of Social Sciences > Chair of Social Data Science and Methodology (Keusch 2022-)
School of Social Sciences > Sonstige - Fakultät für Sozialwissenschaften
Subject: 300 Social sciences, sociology, anthropology
Keywords (English): data sharing , health research , privacy attitudes . contextual integrity , cancer research , public policy
Abstract: The COVID-19 pandemic has spotlighted the importance of high-quality data for empirical health research and evidence-based political decision-making. To leverage the full potential of these data, a better understanding of the determinants and conditions under which people are willing to share their health data is critical. Building on the privacy theory of contextual integrity, the privacy calculus, and previous findings regarding different data types and recipients, we argue that established social norms shape the acceptance of novel practices of data collection and use. To investigate the willingness to share health data, we conducted a preregistered vignette experiment. The scenarios experimentally varied the vignette dimensions by data type, recipient, and research purpose. While some findings contradict our hypotheses, the results indicate that all three dimensions affected respondents’ data sharing decisions. Additional analyses suggest that institutional and social trust, privacy concerns, technical affinity, altruism, age, and device ownership influence the willingness to share health data.

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