Citizen science is a form of knowledge production that is also being developed in the context of epidemiological research through the active participation of citizens to seek shared social objectives, especially in contexts where confidence in official and institutional knowledge has been weakened.

Free and voluntary active citizen participation can take place at various levels: from simple data collection to the construction of tools such as low-cost sensors, to data analysis, to design of research protocols, and the identification of the topics to be investigated. It is a collaborative or promoted research developed only by citizens, which is intended to produce scientific knowledge through a bottom-up, non-academic and non-institutional approach. Therefore, citizen science differs from traditional science both in the way that citizens participate in the research process, considered not only as a research subject but also as an active participant, and in the type of research objectives that intends to investigate about solving social problems that local communities feel strongly and that can provide useful knowledge for broader realities.

In 2015, key principles were established to develop scientifically and ethically valid citizen science projects, regarding the issues involved and taking into account new existing needs. As it is a developing area, many topics are still open. Until now, the ethics that citizens should apply in their research and the possible alignment with the research ethics expressed by international documents have not received much attention. But, along with the growth of citizen science and collaborative research, the topic becomes important.

A first problem refers to the responsible conduct of those who carry out a scientific activity. Since the end of World War II, cases of unethical scientific activities have led to the development of accurate criteria for research ethics that every researcher have to follow. It is a matter of honesty and precision in data collection, storage, analysis and reporting, openness to share data, ideas and tools; respect for intellectual property; respect for the animals used for research and for the dignity, privacy and autonomy of the people participating in research studies; social responsibility and transparency in interaction with the public. In citizen science where the citizen works as a researcher, the principles and values ​​indicated by current research ethics must be respected. The duty, therefore, of the researcher to act in accordance with the ethical and epistemological standards of “good science” also extends to the citizens. Hence, two new types of responsibilities arise: that of the researcher to transfer the ethics of research to the citizens who will be involved in the citizen science process and the responsibility of the citizens to make their own ethical and epistemological standards. These are responsibilities that come into play during the entire knowledge production process and, specifically, in the case of the creation of a research protocol to be submitted to the evaluation of an ethics committee, both in the phase of delimitation of the protocol (a process that also requires information processing and an informed consent form to participate in the study) both in the later stages of conducting the study and in disseminating the results.

A second relevant topic refers to the convenience of using the only ethical framework of traditional research in citizen science contexts. Is this theoretical basis enough to take into account the specific needs of the knowledge production processes based on citizen science studies? This question is still largely to be explored. It could be useful not to lose sight of one of the central characteristics of collaborative research: the recognition of knowledge that comes from the citizens, which allows the active participation of the citizens to be extended beyond the mere collection of data and to consider collaboration between researchers and citizens as a two-way interaction, where researchers and citizens actively contribute to the definition of the objectives of a study. 

Therefore, the proposed solution is to open the traditional ethics of research to confront the citizens’ ethical point of view, both to identify new ethical needs and to face them through a shared path. In citizen science project we find new needs, such as conflicts between researchers and citizens over the research objective to be pursued, about the intellectual property of the research results or about how to share and use these results; or cases in which the control of air quality can have surveillance effects and even discrimination among citizens through data that reveals people’s specific lifestyles, some of which, however, could also be unrelated to the citizen science project.

We are witnessing the transition from an ethics of protection of research subjects to an ethics of empowerment of the “citizen scientists”, which may disagree with the researcher’s point of view. In such a scenario, it is increasingly urgent to understand what are the methods of social and legal legitimation of citizen science practices, especially when they are the only citizens who promote them, and how to harmonize them with existing procedures to regulate scientific activities, in particular ethical approval of research projects promoted by researchers.

Original article by Antonella Ficorilli (Società per l’epidemiologia e la prevenzione “GA Maccacaro”, Impresa sociale srl, Milano; published at Epidemiologia & Prenvenzione 

Epidemiol Prev 2019; 43 (2-3): 124-125


Adaptation and translation: Raül Toran (ISGlobal)