Participatory Disease Surveillance Systems: a proposal for an Ethical Framework

Advances in information technology are changing public health at an unprecedented rate. One of the most evident changes is that it has become easy for members of the general public to contribute to public health surveillance, practice, and policy by sharing personal and health-related information through digital media. However, these new models bring new responsibilities, and raise ethical issues on top of those inherent in traditional forms of public health surveillance. The main dilemma is how to ensure adequate protection of data subjects while obtaining the full benefits that public health surveillance directly involving digital communities of citizens could bring.

In a new paper published in JMIR – Journal of Medical Internet Research, an international team of scientists including ISI Foundation Research Leader Daniela Paolotti deals with this multifaceted issue. By using the digital platform Influenzanet as a case study, researchers illustrate ethical challenges posed to participatory surveillance systems: from the implementation of electronic consent to the protection of participants' privacy, from the promotion of justice to the need for interdisciplinary capacity building of research ethics committees.

On the basis of their analysis, scientists discuss challenges and needs of participant consent in surveillance and research using participant surveillance systems data. They argue that research ethics committee (RECs) should play an important role in this developing field and, finally, they propose a framework for the regulation of digital participatory disease surveillance systems, which strengthens protection of participants’ data and privacy, while promoting the concept of justice.

“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, JMIR – Journal of Medical Internet Research, 23rd May 2019, link