Ethical perspectives in sharing digital data for public health surveillance before and shortly after the onset of the Covid-19 pandemic

ABSTRACT

Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants (N = 25) who completed a survey approximately one month earlier (just prior to the declaration of the COVID-19 pandemic in the United States). Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data (e.g., from contact tracing apps) for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to share data, concerns about privacy, confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people’s perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information (e.g., prevention of COVID-19).

KEYWORDS:

• Data privacy
• contact tracing
• social media
• digital tools
• COVID-19

Disclosure statement

SDY has received gift funding from Facebook and Intel to the University of California Institute for Prediction Technology; consulting funds from ElevateU for an online research platform for health; and equity for advising digital health startups.

Additional information

Funding

This work was supported by the National Institute of Allergy and Infectious Diseases [7R01AI132030], National Institute on Drug Abuse, National Center for Complementary and Integrative Health, and National Institute of Mental Health.