Individual Acceptance of Using Health Data for Private and Public Benefit: Changes During the COVID-19 Pandemic

Abstract

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 crisisdriven 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.

Data trust and data privacy in the COVID-19 period

“…On balance, it would appear that during the COVID-19 period Australians have become more trusting of organizations with regards to data privacy and less concerned about their own personal information and data. An important finding that is slightly different to that found in Gerdon et al (2021) is that in Australia trust in institutions increased regardless of their relevance to the pandemic itself. Combined, the two studies help to add nuance to the contextual integrity theory outlined in Gerdon et al (2021).…”

“…An important finding that is slightly different to that found in Gerdon et al (2021) is that in Australia trust in institutions increased regardless of their relevance to the pandemic itself. Combined, the two studies help to add nuance to the contextual integrity theory outlined in Gerdon et al (2021).…”

“…The data environment during the COVID-19 pandemic has the potential to be affected by the public's views on the safety of their own data, as well as shape these views. Gerdon et al (2021) made use of a pre-existing vignette study looking at the use of data in April 2020 compared to July 2019, finding that "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. "…”

Stop the Spread: A Contextual Integrity Perspective on the Appropriateness of COVID-19 Vaccination Certificates

“…Among studies using the CI framework, some have applied it to investigate users' perception of applications and data handling practices concerning COVID-19. In 2019, Gerdon et al [26], for example, conducted a CI-based longitudinal study in Germany, before the pandemic, examining people's acceptance of using individual health data during a pandemic, for public health or for private purposes. In 2020, in the wake of the pandemic, they were able to perform another such (opportunistic) study.…”

Introduction to the Special Issue on Big Data and Social Policy in Australia

“…This study also reported that increased confidence in government institutions 1 explained an increase in trust in them to maintain data privacy between October 2018 and May 2020 (Biddle et al, 2020). However, it should be noted that research in Germany suggests that public acceptance of the use of individual health data to combat pandemics increased but for other scenarios the acceptance of the use of health data did not change over time (Gerdon et al, 2021).…”