JMIR Publications

ABSTRACT

Advances made in information technology are changing public health at an unprecedented rate. Participatory surveillance systems are contributing to public health by actively engaging Web-based communities of volunteer citizens to report symptoms of public health threats and also by empowering individuals to promptly respond to them. However, such Web-based model raises its own set of ethical issues, on top of those inherent to more traditional forms of public health surveillance. Research ethics is undergoing significant changes in the digital era where it is not sufficient to consider only participants’ physical and psychological well-being, but also the protection of their sensitive data. In this paper, the Web-based platform of Influenzanet is used as a case study to illustrate those ethical challenges which participant-surveillance-systems involving the use of Web-based platforms and mobile apps have to deal with. These ethical challenges include the issues of electronic consent, the protection of participants’ privacy and the promotion of justice. Our analysis is followed by recommendations to strengthen ethical approaches in the field of Web-based public health surveillance, with a particular focus on the role of research ethics committees.