Participatory Disease Surveillance Systems: Ethical Framework.
ethics
influenza, human
public health surveillance
research
smartphone
Journal
Journal of medical Internet research
ISSN: 1438-8871
Titre abrégé: J Med Internet Res
Pays: Canada
ID NLM: 100959882
Informations de publication
Date de publication:
23 05 2019
23 05 2019
Historique:
received:
20
09
2018
accepted:
29
03
2019
revised:
08
03
2019
entrez:
25
5
2019
pubmed:
28
5
2019
medline:
15
2
2020
Statut:
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.
Identifiants
pubmed: 31124466
pii: v21i5e12273
doi: 10.2196/12273
pmc: PMC6660191
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e12273Informations de copyright
©Lester Darryl Geneviève, Andrea Martani, Tenzin Wangmo, Daniela Paolotti, Carl Koppeschaar, Charlotte Kjelsø, Caroline Guerrisi, Marco Hirsch, Olivia Woolley-Meza, Paul Lukowicz, Antoine Flahault, Bernice Simone Elger. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 23.05.2019.
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