From biobank to “bioteca”: An innovative project to share decision-making and research processes

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.1,2 A dispetto di questo intento di tutela, tutavia, le modalità di consenso e controllo relative alla donazione dei materiali biologici sono state oggetto di controversie. I modelli di governance delle biobanche, sovente poco trasparenti e prevalentemente improntati a finalità di profitto, hanno faticato a guadagnare la fiducia dei donatori.

Truth, Knowledge, and Democratic Authority in the Public Health Debate

Quality of democratic arrangements does matter. This kind of conceptual breakthrough has been made through painfully engagement with the nonphilosophical area of inquiry arisen by the COVID-19 pandemic. The pandemic has dramatically emphasized that health is a highly political domain. No surprise then that it made possible to challenge common thought about democratic procedures in political theory that considers procedure-independent standards suspicious. Therefore it is fair to state that the COVID-19 pandemic has taken the quality of democratic outcomes back on center stage in the debate in political theory, which has been dominated by fair proceduralism’s claim not to refer to any procedure-independent standards of good political decisions. Procedural values have traditionally been seen as a defining element of fair deliberation and essential for democracy. They have been extolled in social choice theory that claims that democracy does not exhibit any particular disposition to lead to good or just political arrangements. They are the focus of attention in Jürgen Habermas’ procedural rationality, though philosophers are now more skeptical about the divorce between procedures and substantive standards. Overall, issues surrounding the topic of ensuring citizens’ health make the topic politically central and philosophically interesting for epistemic theories and impartial proceduralism theories of democracy alike. The aim of this paper is to justify the legitimacy and authority of public health policies on the basis of arguments that do not simply are a matter of their being democratic. In the first part, I want to display and criticize the idea that proceduralism’s not getting one’s hands dirty with the substance of decisions and remaining neutrally adherent only to procedures is untenable in the present case. Having criticized democratic theories that want to restrict themselves to purely procedural values, in the second part I will focus on the idea of knowledge and make explicit its characters of being practical and shared. Eventually, it will help to have one example. M-Health will show that many valuable insights would be incompatible with the restrictions of the proceduralism. Philosophical consideration of health will combine epistemic issues with political ones triggered by technology and sharpened by the COVID-19 pandemic

Truth, Knowledge, and Democratic Authority in the Public Health Debate

Quality of democratic arrangements does matter. This kind of conceptual breakthrough has been made through painfully engagement with the nonphilosophical area of inquiry arisen by the COVID-19 pandemic. The pandemic has dramatically emphasized that health is a highly political domain. No surprise then that it made possible to challenge common thought about democratic procedures in political theory that considers procedure-independent standards suspicious. Therefore it is fair to state that the COVID-19 pandemic has taken the quality of democratic outcomes back on center stage in the debate in political theory, which has been dominated by fair proceduralism’s claim not to refer to any procedure-independent standards of good political decisions. The aim of this paper is to justify the legitimacy and authority of public health policies on the basis of arguments that do not simply are a matter of their being democratic. In the first part, I want to display and criticize the idea that proceduralism’s not getting one’s hands dirty with the substance of decisions and remaining neutrally adherent only to procedures is untenable in the present case. Having criticized democratic theories that want to restrict themselves to purely procedural values, in the second part I will focus on the idea of knowledge and make explicit its characters of being practical and shared. Eventually, it will help to have one example. M-Health will show that many valuable insights would be incompatible with the restrictions of the proceduralism. Philosophical consideration of health will combine epistemic issues with political ones triggered by technology and sharpened by the COVID-19 pandemic

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

Information and Communication Technologies, Genes, and Peer-Production of Knowledge to Empower Citizens' Health

The different and seemingly unrelated practices of Information and Communication Technologies (ICT) used to collect and share personal and scientific data within networked communities, and the organized storage of human genetic samples and information-namely biobanking-have merged with another recent epistemic and social phenomenon, namely scientists and citizens collaborating as "peers" in creating knowledge (or peer-production of knowledge). These different dimensions can be found in joint initiatives where scientists-and-citizens use genetic information and ICT as powerful ways to gain more control over their health and the environment. While this kind of initiative usually takes place only after rights have been infringed (or are put at risk)-as the two cases presented in the paper show-collaborative scientists-and-citizens' knowledge should be institutionally allowed to complement and corroborate official knowledge-supporting policies

Impact of mobilising collective intelligence in clinical research planning

New methods of conducting research have been emerging outside clinical research. For example, worldwide game players helped to construct protein molecular which scientists had been struggling with for 15 years. In these examples, researchers leveraged collective intelligence of people who were not usually involved in research. My research aims to investigate whether and how mobilising collective intelligence could be used in the planning of a randomised controlled trial. To achieve this aim, I first conducted a scoping review to describe the methods of mobilising collective intelligence across different research fields. From this scoping review, I proposed a framework for implementing a research project using these new methods. Second, I conducted a qualitative study involving online survey and semi-structured interviews to investigators, researchers or coordinators of research projects mobilising collective intelligence. Drawing on their experience, I provided good practice advice for the governance, planning, and conducting of research involving collective intelligence. Finally, I developed a proof-of-concept study using case vignettes to leverage patients’ collective intelligence to improve trial organisation. Patients proposed several suggestions to improve the logistical organisation of trials. They also highlighted the importance of changing one-size-fits-all approach of trial organisation. In conclusion, the work in this thesis provides the first comprehensive accounts of methods used to mobilise collective intelligence across different research disciplines. The proof-of-concept study provided an example of leveraging patients’ collective intelligence to explore ideas and perspectives to improve clinical trial planning