Elsevier

Epidemics

Volume 41, December 2022, 100652
Epidemics

In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology

https://doi.org/10.1016/j.epidem.2022.100652Get rights and content
Under a Creative Commons license
open access

Highlights

  • Digital epidemiology holds great potential to surveil and fight epidemics.

  • Privacy monopolizes the debate on the ethics and governance of digital epidemiology.

  • Other important issues and their ethical consequences remain unaddressed.

  • Overlooking these issues will undermine the power of health surveillance technology.

  • Need for a broader ethical approach and a social license for data uses.

Abstract

The COVID-19 pandemic witnessed a surge in the use of health data to combat the public health threat. As a result, the use of digital technologies for epidemic surveillance showed great potential to collect vast volumes of data, and thereby respond more effectively to the healthcare challenges. However, the deployment of these technologies raised legitimate concerns over risks to individual privacy. While the ethical and governance debate focused primarily on these concerns, other relevant issues remained in the shadows. Leveraging examples from the COVID-19 pandemic, this perspective article aims to investigate these overlooked issues and their ethical implications. Accordingly, we explore the problem of the digital divide, the role played by tech companies in the public health domain and their power dynamics with the government and public research sector, and the re-use of personal data, especially in the absence of adequate public involvement. Even if individual privacy is ensured, failure to properly engage with these other issues will result in digital epidemiology tools that undermine equity, fairness, public trust, just distribution of benefits, autonomy, and minimization of group harm. On the contrary, a better understanding of these issues, a broader ethical and data governance approach, and meaningful public engagement will encourage adoption of these technologies and the use of personal data for public health research, thus increasing their power to tackle epidemics.

Keywords

Digital epidemiology
Big data
COVID-19
Ethics
Public engagement
Privacy

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