Citizens’ veillance on environmental health through ICT and genes

In the last decade three different phenomena have merged: the widespread use of ICT devices to collect and potentially share personal and scientific data, and to build networked communities; biobanking for genomics, namely the organized storage of human biological samples and information; and the collaboration between scientists and citizens in creating knowledge—namely peer-production of knowledge— for shared social goals. These different forms of knowledge, technical tools, and skills have merged in community-based scientific and social —as well as legal—initiatives, where scientists-and-citizens use genetic information and ICT as powerful ways to gain more control over their health and the environment. These activities can no longer be simply qualified as epidemiological research and surveillance. Instead they can be framed as new forms of citizens’ participatory ‘veillance:’ an attitude of cognitive proactive alertness towards the protection of common goods. This paper illustrate two Italian case-studies where citizens and scientists, by making use of both ICT and biobanking, have joined with the goal of protecting environmental health in highly polluted contexts.