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2 March 2023 A preregistered vignette experiment on determinants of health data sharing behavior
Willingness to donate sensor data, medical records, and biomarkers
Henning Silber, Frederic Gerdon, Ruben Bach, Christoph Kern, Florian Keusch, Frauke Kreuter
Author Affiliations +
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.

Henning Silber, Frederic Gerdon, Ruben Bach, Christoph Kern, Florian Keusch, and Frauke Kreuter "A preregistered vignette experiment on determinants of health data sharing behavior
Willingness to donate sensor data, medical records, and biomarkers," Politics and the Life Sciences 41(2), 161-181, (2 March 2023). https://doi.org/10.1017/pls.2022.15
Published: 2 March 2023
JOURNAL ARTICLE
21 PAGES

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KEYWORDS
cancer research
contextual integrity
data sharing
health research
privacy attitudes
public policy
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