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

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. Howe...

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Main Authors: Agata Ferretti, Effy Vayena
Format: Article
Language:English
Published: Elsevier 2022-12-01
Series:Epidemics
Subjects:
Online Access:http://www.sciencedirect.com/science/article/pii/S1755436522000925
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author Agata Ferretti
Effy Vayena
author_facet Agata Ferretti
Effy Vayena
author_sort Agata Ferretti
collection DOAJ
description 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.
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spelling doaj.art-dc8aa6dd66ac40f39340cb8ace0f61a72022-12-22T04:40:25ZengElsevierEpidemics1755-43652022-12-0141100652In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiologyAgata Ferretti0Effy Vayena1Correspondence to: ETH Zurich, Hottingerstrasse 10 (HOA), 8092 Zurich, Switzerland.; Health Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich, SwitzerlandHealth Ethics and Policy Lab, Department of Health Sciences and Technology, ETH Zurich, SwitzerlandThe 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.http://www.sciencedirect.com/science/article/pii/S1755436522000925Digital epidemiologyBig dataCOVID-19EthicsPublic engagementPrivacy
spellingShingle Agata Ferretti
Effy Vayena
In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology
Epidemics
Digital epidemiology
Big data
COVID-19
Ethics
Public engagement
Privacy
title In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology
title_full In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology
title_fullStr In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology
title_full_unstemmed In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology
title_short In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology
title_sort in the shadow of privacy overlooked ethical concerns in covid 19 digital epidemiology
topic Digital epidemiology
Big data
COVID-19
Ethics
Public engagement
Privacy
url http://www.sciencedirect.com/science/article/pii/S1755436522000925
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