Participatory Disease Surveillance Systems: Ethical Framework.

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State: Public
Version: Final published version
License: CC BY 4.0
Serval ID
serval:BIB_61E02C40F7DB
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
Title
Participatory Disease Surveillance Systems: Ethical Framework.
Journal
Journal of medical Internet research
Author(s)
Geneviève L.D., Martani A., Wangmo T., Paolotti D., Koppeschaar C., Kjelsø C., Guerrisi C., Hirsch M., Woolley-Meza O., Lukowicz P., Flahault A., Elger B.S.
ISSN
1438-8871 (Electronic)
ISSN-L
1438-8871
Publication state
Published
Issued date
23/05/2019
Peer-reviewed
Oui
Volume
21
Number
5
Pages
e12273
Language
english
Notes
Publication types: Journal Article
Publication Status: epublish
Abstract
Advances in information technology are changing public health at an unprecedented rate. Participatory surveillance systems are contributing to public health by actively engaging digital (eg, Web-based) communities of volunteer citizens to report symptoms and other pertinent information on public health threats and also by empowering individuals to promptly respond to them. However, this digital model raises ethical issues on top of those inherent in traditional forms of public health surveillance. Research ethics are undergoing significant changes in the digital era where not only participants' physical and psychological well-being but also the protection of their sensitive data have to be considered. In this paper, the digital platform of Influenzanet is used as a case study to illustrate those ethical challenges posed to participatory surveillance systems using digital platforms and mobile apps. These ethical challenges include the implementation of electronic consent, the protection of participants' privacy, the promotion of justice, and the need for interdisciplinary capacity building of research ethics committees. On the basis of our analysis, we propose a framework to regulate and strengthen ethical approaches in the field of digital public health surveillance.
Keywords
ethics, influenza, human, public health surveillance, research, smartphone
Pubmed
Web of science
Open Access
Yes
Create date
29/05/2019 13:29
Last modification date
20/08/2019 14:18
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