Epidemiologia ambientale ben temperata: etica, sociologia e storia in un progetto di citizen science

The article presents the research performed by an Italian multi-disciplinary team jointly with a group of citizen scientists. The research was part of the project CitieS-Health (Citizen Science for Urban Environment and Health) funded by the EU under the Horizon2020 Programme. Aria di Ricerca in Valle del Serchio , one of the project five pilot studies, was performed in eight municipalities of Valle del Serchio (Lucca, Tuscany) and addressed the prevalence of chronic kidney diseases in the context of potential industrial pollution on health and, in particular, the presence of heavy metals in the environment. Since long, health and environmental issues have been of concern for the local residents who over the years promoted many initiatives to ensure adequate monitoring and appropriate policy interventions. Inspired by the PNS (Post-Normal Science) approach, and in particular the idea of Extended Peer Community, the study addressed local concerns and expectations integrating a multiplicity of competences, knowledges and perspectives. Researchers from Social Sciences and Humanities – namely history, sociology and ethics – collaborated with others from the health sector – epidemiology in particular – and with citizens in all the phases of the work: from the definition of the research objective to the collection, analysis and dissemination of the research results, and the suggestion of policy recommendations

Investigating the process of ethical approval in citizen science research: The case of Public Health

Undertaking citizen science research in Public Health involving human subjects poses significant challenges concerning the traditional process of ethical approval. It requires an extension of the ethics of protection of research subjects in order to include the empowerment of citizens as citizen scientists. This paper investigates these challenges and illustrates the ethical framework and the strategies developed within the CitieS-Health project. It also proposes first recommendations generated from the experiences of five citizen science pilot studies in environmental epidemiology within this project.publishedVersio

Implementing co-created citizen science in five environmental epidemiological studies in the CitieS-Health project

BACKGROUND AND AIM: Scientists and scientific institutions are adopting more extensive participatory models, hoping to revisit the existing relationship between science and society. Though citizen science has become more common in environmental monitoring, it is seldom utilized in environmental epidemiology. In the CitieS-Health project, we co-created epidemiological studies with citizens in five European countries. The aim of this paper is to share our experiences and impart methodological insight into the application of co-created citizen science strategies in environmental epidemiology. METHODS: We applied the CitieS-Health framework, involving citizens in all the phases of the studies: identifying research questions, designing research protocols, collecting data, analysing data, interpreting data, formulating conclusions, authoring scientific articles and communicating the results to diverse audiences. These epidemiological studies, conducted in specific areas in Italy, Lithuania, the Netherlands, Slovenia and Spain, covered diverse local environmental issues and health effects ranging from air pollution and mental health to industrial pollution and kidney disease. RESULTS: Together with citizens, we successfully conducted environmental epidemiological studies that generated new scientific knowledge reflecting the concerns and knowledge of citizens. Citizens contributed in all the research activities, including activities beyond formulating the research questions, though the researchers initiated several design discussions and conducted time-consuming and complex tasks (e.g. data analysis, measurement of specific exposures and health outcomes). The challenges we encountered were engaging effectively with citizens throughout the study, harmonizing citizens' knowledge and values with the academics' expertise, managing civic expectations, making complex concepts understandable to citizens and representativeness of participating citizens. The co-created studies were able to empower citizens to address local health concerns by sharing and using scientific knowledge generated from studies. CONCLUSIONS: Integration of co-created citizen science in environmental epidemiology is feasible and has the potential to improve the quality of research whilst promoting civic trust in research and results

Implementing co-created citizen science in five environmental epidemiological studies in the CitieS-Health project

Background and aim: Scientists and scientific institutions are adopting more extensive participatory models, hoping to revisit the existing relationship between science and society. Though citizen science has become more common in environmental monitoring, it is seldom utilized in environmental epidemiology. In the CitieS-Health project, we co-created epidemiological studies with citizens in five European countries. The aim of this paper is to share our experiences and impart methodological insight into the application of co-created citizen science strategies in environmental epidemiology. Methods: We applied the CitieS-Health framework, involving citizens in all the phases of the studies: identifying research questions, designing research protocols, collecting data, analysing data, interpreting data, formulating conclusions, authoring scientific articles and communicating the results to diverse audiences. These epidemiological studies, conducted in specific areas in Italy, Lithuania, the Netherlands, Slovenia and Spain, covered diverse local environmental issues and health effects ranging from air pollution and mental health to industrial pollution and kidney disease. Results: Together with citizens, we successfully conducted environmental epidemiological studies that generated new scientific knowledge reflecting the concerns and knowledge of citizens. Citizens contributed in all the research activities, including activities beyond formulating the research questions, though the researchers initiated several design discussions and conducted time-consuming and complex tasks (e.g. data analysis, measurement of specific exposures and health outcomes). The challenges we encountered were engaging effectively with citizens throughout the study, harmonizing citizens' knowledge and values with the academics' expertise, managing civic expectations, making complex concepts understandable to citizens and representativeness of participating citizens. The co-created studies were able to empower citizens to address local health concerns by sharing and using scientific knowledge generated from studies. Conclusions: Integration of co-created citizen science in environmental epidemiology is feasible and has the potential to improve the quality of research whilst promoting civic trust in research and results

Comunicazione della scienza ed era digitale. Un caso di studio nell'ambito della sclerosi multipla

Ripensare il rapporto fra scienza e democrazia

From asilomar to genome editing. Research ethics and models of decision

The aim of the presentation is to focus on the differences between two scientific contexts: the genetic engineering context of the 1970s, with specific attention paid to the use of the recombinant DNA technique to generate genetically modified molecules, and the current genome editing context, with specific attention paid to the use of CRISPR-Cas9 technology to modify human germline cells genetically. In both events, scientists have been involved in discussions that have gone beyond mere professional deontology touching on specific policy issues such as freedom of research, responsibility for the consequences of research, the right of the public to participate in the evaluation of the goals of research methods, the relationship between cost and benefit and possible social consequences. The comparison between these two scientific contexts suggests the need of handling such issues by defining procedures that meet the criteria of democracy and responsibility towards society. The underlying objective should be to effectively launch actions and interventions based not on a hierarchical approach but rather a reticular conception of knowledge

Dalle biobanche alle bioteche. Una innovazione profonda per la condivisione dei processi decisionali e di ricerca

Le biobanche, come è noto, sono luoghi di raccolta e custodia sistematica di materiali biologici e informazioni da utilizzare per finalità di ricerca. A partire dalla fine degli anni Novanta del secolo scorso, in ambito sia statunitense sia europeo, le ricerche sui materiali umani, quanto a requisiti di consenso e di protezione dei dati, sono state equiparate alle ricerche su soggetti umani

Research is in the air in Valle del Serchio

In this paper, we will present an ongoing Citizen Science (CS) project in environmental epidemiology in five European countries focussing on the Italian pilot study conducted in the Serchio Valley (Tuscany). The area is rich in natural, cultural and historic significance, but it also suffers from environmental contamination from a variety of sources, including industry, which is a health concern for the local population. The study is framed as a Post-Normal Science (PNS) project, applying, in particular, the idea of extended peer community (EPC). The research team looked for and encouraged the engagement of local residents in all the phases of the project, from the framing of the problem to 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. We discuss the novelty of our approach, 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 pandemic, 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.publishedVersio

Epidemiologia ambientale ben temperata. Etica, sociologia e storia in un progetto di citizen science

The article presents the research performed by an Italian multi-disciplinary team jointly with a group of citizen scientists. The research was part of the project CitieS-Health (Citizen Science for Urban Environment and Health) funded by the EU under the Horizon2020 Programme. Aria di Ricerca in Valle del Serchio, one of the project five pilot studies, was performed in eight municipalities of Valle del Serchio (Lucca, Tuscany) and addressed the prevalence of chronic kidney diseases in the context of potential industrial pollution on health and, in particular, the presence of heavy metals in the environment. Since long, health and environmental issues have been of concern for the local residents who over the years promoted many initiatives to ensure adequate monitoring and appropriate policy interventions. Inspired by the PNS (Post-Normal Science) approach, and in particular the idea of Extended Peer Community, the study addressed local concerns and expectations integrating a multiplicity of competences, knowledges and perspectives. Researchers from Social Sciences and Humanities – namely history, sociology and ethics – collaborated with others from the health sector – epidemiology in particular – and with citizens in all the phases of the work: from the definition of the research objective to the collection, analysis and dissemination of the research results, and the suggestion of policy recommendations