A preregistered vignette experiment on determinants of health data sharing behavior

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.

Asking for Traces: A Vignette Study on Acceptability Norms and Personal Willingness to Donate Digital Trace Data

“…According to PC, individuals consider risks and benefits in their privacy-related decision-making. Following the argumentation by Silber et al (2022b), we assume that individuals consider risks and benefits of a data flow with respect to values and goals in each social context. In addition, PC allows us to include further situational factors that may affect data sharing decisions, such as the perceived sensitivity of data and previous personal experiences, which both may affect whether individuals believe that a context-specific goal can be achieved with a given data flow.…”

“…When considering the recipient of the data, previous research has mainly focused on who the first-hand data recipient of the data collection was (e.g., Gerdon et al 2021;Pfiffner & Friemel, 2023;Silber et al 2022b). For example, Gerdon et al (2021) showed that people were more willing to share their health data with a private than with a public institution; a result that was not found by Silber et al (2022b).…”

“…When considering the recipient of the data, previous research has mainly focused on who the first-hand data recipient of the data collection was (e.g., Gerdon et al 2021;Pfiffner & Friemel, 2023;Silber et al 2022b). For example, Gerdon et al (2021) showed that people were more willing to share their health data with a private than with a public institution; a result that was not found by Silber et al (2022b). Similar to Gerdon et al (2021), a recent study conducted in Hungary by Máté et al (2023) found that respondents were more willing to share smartphone (app) data with a private company compared to a government institution.…”

Ethical Considerations for Augmenting Surveys with Auxiliary Data Sources

“…( Revilla et al 2019 ), download a research app that would track geolocation, app use on smartphone and send additional questionnaires ( Keusch et al 2019 ), share their geolocation, photos, or videos, and download an app for the collection of household expenditure data ( Jäckle et al 2019 ). Studies have found that higher privacy concerns are associated with lower willingness to participate in app-based and smartphone sensor data collection ( Keusch et al 2019 ; Revilla et al 2019 ; Wenz et al 2019 ; Struminskaya et al 2020 , 2021 ; Roberts et al 2022 ; Silber et al 2022 ), as well as linking survey data to social media data ( Mneimneh et al 2021 ). Despite efforts to emphasize privacy and confidentiality protection, such as assuring respondents that their data will be anonymized, will not be accessed by third parties, and will only be used for the purposes of the research, there was no increase in stated willingness or actual sharing of data collected by smartphone sensors ( Struminskaya et al 2020 , 2021 ).…”

Introduction to the Special Issue—Life Science in Politics: Methodological Innovations and Political Issues

“…For example, life scientists at the U.S. Centers for Disease Control and Prevention expressed surprise at politically grounded opposition to vaccine uptake, an objection that is not entirely surprising given the literature on politically motivated reasoning. In this special issue, Silber, Gerdon, Bach, Kern, Keusch, and Kreuter (2022) consider the circumstances under which individuals are willing to share their health data. In a German sample, they find that data type, who is collecting the data, and the research purpose all jointly affect people’s willingness to share their health data.…”