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A preregistered vignette experiment on determinants of health data sharing behavior: Willingness to donate sensor data, medical records, and biomarkers
[journal article]
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 ... view more
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.... view less
Keywords
research; public policy; attitude; data; cancer; privacy; data exchange; health
Classification
Methods and Techniques of Data Collection and Data Analysis, Statistical Methods, Computer Methods
Health Policy
Free Keywords
data sharing; health research; privacy attitudes; contextual integrity; cancer research; public policy
Document language
English
Publication Year
2022
Page/Pages
p. 161-181
Journal
Politics and the Life Sciences, 41 (2022) 2
DOI
https://doi.org/10.1017/pls.2022.15
ISSN
1471-5457
Status
Published Version; peer reviewed
Licence
Creative Commons - Attribution 4.0
FundingGefördert durch die Deutsche Forschungsgemeinschaft (DFG) - Projektnummer 491156185 / Funded by the German Research Foundation (DFG) - Project number 491156185