LA VIGILANZA DEI CITTADINI SULLA SALUTE AMBIENTALE TRA TECNOLOGIE DIGITALI E GENOMICA

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 communitybased 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 illustrates 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. The statute of these initiatives still needs to be defined as to both the validity of the underlying citizen science and the lack of adequate legal tools for structuring them. However, as to their scientific quality and use of sophisticated technologies, these activities cannot be compared to previous experiences, such as those inspired by so-called popular epidemiology.Moreover, the deep awareness towards the data to be transparent, reliable, and accessible, as well as towards funding mechanisms to be crowdsourced, allows these experiences to go beyond the mere confrontation with institutional knowledge, and to represent a potential model for knowledge production for institutional implementation.