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
Aria di Ricerca in Valle del Serchio
Which local issue does the pilot aim to tackle through a citizen science approach?
The Serchio Valley (province of Lucca -Tuscany- Italy) is an area with a strong contradiction. On one hand it has first order environmental, historic and naturalistic assets with natural reserves, protected areas, and UNESCO sites. High quality food and wine are produced in the area, and cultivation of agricultural crops in general is a widespread activity. On the other hand the levels of environmental pollutants recorded during the past twenty years are above limits set by law, and the health conditions of local population are worrisome, with mortality rates for chronic illnesses higher than average. Therefore, serious concerns for the local population are represented by the effects on health of the chronic exposure to traffic, environmental and professional exposure to environmental pollutants.
Which communities will be engaged in the pilot?
Large groups of citizens have been active in the area joining various environmental associations. Currently most of them converged in the La Libellula (The Dragonfly), movement with a number of new activists and citizens already involved in campaigning to protect the environment and health for over 15 years. This large community of citizens aims to:
This last aspect represents one of the main commitments of these citizens communities as it involves a substantial change of mentality and the overcoming of the contrast between citizens and administrators that in the past brought to the sad but inevitable distancing of citizens from politics.
Constantly seeking for collaborations they came in contact with the committee Mamme no inceneritore (Mothers against incinerators) in Florence (Tuscany- Italy) and made an agreement with it, so making possible the sharing in the Serchio Valley of the expertise gained in the community participated research project “Che aria tira” (“What’s the air like”) - www.cheariatira.it – with regard to self-assembling suspended particulate matter (PM10 and PM2.5) monitoring devices and installing them in the territory. The deep involvement of citizen communities in this project is largely motivated by the worrying data recorded by the Regional Environmental Protection Agency-ARPAT since the eighties, which show the precariousness of the conditions in the Serchio valley floor. As the results of our previous study showed an excess risk of chronic conditions in the area (e.g. 5% excess mortality risk in men, 20%-34% increase in ischemic heart disease, 22%-32% increase in chronic respiratory diseases, and 67%-84% increase in chronic renal failure, www.cd.biostatistica.net) that could be correlated to environmental pollution, the local citizen communities also intend to pursue initiatives involving both health and environment.
The Local Health Unit of Lucca includes the Lucca Plain (7 Municipalities) and Serchio river Valley (21 Municipalities), which is of concern for the present research. For the present pilot study we focus on the six municipalities in Media Valle del Serchio, which subscribed a formal letter of support (attached).
Which type of data will be collected through the pilot?
The monitoring network established with community participation and the necessary hardware and software facilities were built in order to make data entirely and immediately available to the public. The whole technical procedure is fully reproducible and open source. Monitoring sensors are usually assembled in public laboratories by volunteers and then, after calibration, placed in people’s houses. A fundamental technical support is provided by local associations of volunteers: FabLab Firenze (www.fablabfirenze.org/) and NINUX Firenze (www.firenze.ninux.org/). Moreover, in order to ensure scientific soundness, a steady and fruitful collaboration has been established with E & P (Società per l'Epidemiologia e la Prevenzione "Giulio A. Maccacaro" Impresa Sociale srl http://www.epiprev.it/GAM/Intro), chosen for its vision: listen, learn, cooperate and favour the transmission of scientific knowledge. Specific self-assembled monitoring sensors will be developed for PM10, PM2.5, NOx, VOC, temperature, and humidity. In the open data optics, the computing platform is designed to accept data also from monitoring units that are not part of the network. These may include those of the bodies responsible for monitoring air quality as Arpat, in Tuscany www.arpat.toscana.it/.
In order to face a different concern, related to a possible larger prevalence of chronic kidney diseases (CKD) in the general population attributable to not yet fully identified environmental determinants, further data will be collected through the administration of an ad hoc questionnaire and the collection of urine and blood specimens from a representative adult population-based sample of resident subjects via collaboration with The Regional Health Authority, which subscribe a letter of support to the project (attached). The design of the study will be done in collaboration with citizens, who will contribute in designing the questionnaire, deciding the target population, and providing additional insights and concerns. Potential tools to be used to investigate renal function include: 1) a current evaluation of kidney health through the ad hoc questionnaire, the collection of basic clinical measurements (i.e. blood pressure, height and weight) and the dipstick urinalysis (i.e. urine blood, protein, leukocytes, glucose, pH, and specific gravity) read using an optical reader; and 2) collection and storage of blood and urine samples for future clinical tests or validation of previous tests.
How does the pilot contribute to address scientific gaps in the literature?
The increase of chronic conditions in the area, and in particular of CKD, is not fully understood. Although environmental determinants may partly drive the increased risk, the particular environmental determinants driving the increased risk have not been identified. The procedures of the pilot study are in accordance with the DEGREE protocol http://degreestudy.org/ an international collaboration between researchers across disciplines dedicated to better understanding the prevalence and geographic scope of Chronic Kidney Disease of undetermined causes (CKDu) worldwide.