Participatory Disease Surveillance Systems: Ethical Framework

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

In: Journal of Medical Internet Research (JMIR), Vol. 21, No. 5, Page e12273, JMIR Publications, 5/2019.


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.

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Deutsches Forschungszentrum für Künstliche Intelligenz
German Research Center for Artificial Intelligence