Frederic Gerdon, Helen Nissenbaum, Ruben L. Bach, Frauke Kreuter, Stefan Zins
Individual Acceptance of Using Health Data for Private and Public Benefit: Changes During the COVID-19 Pandemic

Harvard Data Science Review, 2021: Special issue "COVID-19: Unprecedented Challenges and Chances", issue 1, pp. 1-24 (e-only)
ISSN: 2644-2353 (online)

While the COVID-19 pandemic has been devastating, data collected in this context has unprecedented opportunities for data scientists. The stunning breadth of data obtained through new gathering systems put in place to manage the pandemic offers a richly textured view of a transformed world. Looking forward, privacy researchers worry that these new data-gathering systems risk running afoul of societal norms regarding the flow of information. Looking back at pre-pandemic public preferences with respect to data sharing may provide us some idea of what to expect in the future. In July of 2019, we happened to conduct a vignette study in Germany to examine the public’s willingness to share data for fighting an outbreak of an infectious disease. In April of 2020, during the first peak of the pandemic, we repeated the study to examine crisis-driven changes in respondents’ willingness to share data for public health purposes with three different samples. Public acceptance of the use of individual health data to combat an infectious disease outbreak increased notably between the two measurements, while acceptance of data use in several other scenarios barely changed over time. This shift aligns with the predictive framework of contextual integrity theory, and the data presented here may serve as a good reminder for policymakers to carefully consider the intended purpose of and appropriate limitations on data use.