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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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Detalles Bibliográficos
Autores principales: Ferretti, Agata, Vayena, Effy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: The Authors. Published by Elsevier B.V. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9635223/
https://www.ncbi.nlm.nih.gov/pubmed/36356477
http://dx.doi.org/10.1016/j.epidem.2022.100652
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author Ferretti, Agata
Vayena, Effy
author_facet Ferretti, Agata
Vayena, Effy
author_sort Ferretti, Agata
collection PubMed
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 pubmed-96352232022-11-04 In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology Ferretti, Agata Vayena, Effy Epidemics Article 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. The Authors. Published by Elsevier B.V. 2022-12 2022-11-04 /pmc/articles/PMC9635223/ /pubmed/36356477 http://dx.doi.org/10.1016/j.epidem.2022.100652 Text en © 2022 The Authors Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
spellingShingle Article
Ferretti, Agata
Vayena, Effy
In the shadow of privacy: Overlooked ethical concerns in COVID-19 digital epidemiology
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 Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9635223/
https://www.ncbi.nlm.nih.gov/pubmed/36356477
http://dx.doi.org/10.1016/j.epidem.2022.100652
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