Participatory Disease Surveillance Systems: Ethical Framework.

Détails

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Etat: Public
Version: Final published version
Licence: CC BY 4.0
ID Serval
serval:BIB_61E02C40F7DB
Type
Article: article d'un périodique ou d'un magazine.
Sous-type
Synthèse (review): revue aussi complète que possible des connaissances sur un sujet, rédigée à partir de l'analyse exhaustive des travaux publiés.
Collection
Publications
Institution
Titre
Participatory Disease Surveillance Systems: Ethical Framework.
Périodique
Journal of medical Internet research
Auteur⸱e⸱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
Statut éditorial
Publié
Date de publication
23/05/2019
Peer-reviewed
Oui
Volume
21
Numéro
5
Pages
e12273
Langue
anglais
Notes
Publication types: Journal Article
Publication Status: epublish
Résumé
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.
Mots-clé
ethics, influenza, human, public health surveillance, research, smartphone
Pubmed
Web of science
Open Access
Oui
Création de la notice
29/05/2019 13:29
Dernière modification de la notice
20/08/2019 14:18
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