Researchers from the Società per l′Epidemiologia e la Prevenzione “Giulio A. Maccacaro” (Italy) have presented an ongoing Citizen Science (CS) project in environmental epidemiology in five European countries from the Horizon 2020 CitieS-Health project focussed on the Italian pilot study developed in the Serchio Valley (Tuscany). “This area, rich in natural, cultural and historic significance, suffers from environmental pollution from a diverse range of sources, including industry, which is an important health concern for the local population”, explains Bruna De Marchi, main author of this paper.
The study was framed as a Post-Normal Science project, applying the idea of extended peer community. The research team looked for and encouraged the engagement of local residents in all the phases of the project. The paper focuses on the novelty of this approach in environmental epidemiology, the progress so far, the different types of challenges encountered and the strategies adopted to deal with them. “Besides the totally unexpected problems generated by the COVID-19 pandemics, we focus on the difficulty in conforming to the requirements of standard medical ethics, which do not take into account the peculiarities of projects such as ours”, says Antonella Ficorilli, bioethicist.
The project intends to put the citizens’ concerns at the heart of the research agenda by asking them to explicitly express their interests, but “we also wanted them to fully participate in the creation of the research agenda in all its phases, from the framing of the problem, the definition of the specific research questions, the research design, the collection and analysis of data, the dissemination of results, and the drafting of policy recommendations”, highlights Annibale Biggeri.
On the basis of previous experiences, the researcher team envisaged a number of strategies to favour the engagement of local residents and administrators, discarding the choice of a rigid blueprint, and leaving open the possibility of making changes and adapting to emerging needs and interests or unforeseen contingencies. “This approach proved to be very useful in the first phase of the project when local associations significantly contributed to the development of a survey on health and environmental concerns, and to the retrieval of historical records, documents, and testimonies, in particular with regard to the industrial development of the Valley”, specifies Biggeri.
In the second phase of the project, which foresees the collection of biological specimens, flexibility proved to be essential to perform the required tasks under the restrictions imposed by the COVID-19 pandemic. “The reorganisation was possible thanks to an increased involvement of the local community and many creative solutions were imagined and implemented together with the research team. This testifies a mutual trust relationship built on the sharing of the research objectives and the collective discussion of the plausible scenarios that may emerge from the research results and their policy implications”, confirms De Marchi.
Ethical clearance required considerable creativity to overcome the many bureaucratic hurdles. A significant and still unaddressed novelty of CS projects concerns the double role of citizens as both research subjects and scientists. “Citizen scientists are bound to the same ethical principles, rules, and guidelines as professional researchers, but there are no rules or procedures regarding this aspect”, concludes Ficorilli.
Bruna De Marchi, Antonella Ficorilli, Annibale Biggeri. Research is in the air in Valle del Serchio. Futures, Volume 137, March 2022, 102906