Best Practices in Citizen Science in the Biomedical and Health Sciences

Le résumé fourni par la source

This document serves both as an introduction to Citizen Science in the health sciences, and, more importantly, as practical guide and a repository of best practices to guide GIMM CARE and GIMM Discovery researchers in including citizen science in their research. As a living document it will be updated regularly, to reflect new scholarship in this field and experiences gained by GIMM researchers in developing their own citizen science practices. While citizen science has been well developed in scientific fields such as astronomy, biology, the environmental sciences, including in Portugal (Luís 2022) its application in the health sciences remains comparatively limited. Out of the 349 projects available at the EU Citizen science platform, only 49 have health and medicine among their topics. Projects with a particular focus on biomedical sciences are even fewer. In the Portuguese platform of citizen science there are 7 projects that are included in the domain Health and Medicine (several of which have a stronger environmental component). Nevertheless, there is a long tradition of citizen involvement in biomedical research, from less intensive degrees of engagement, such as sample donation or clinical trials, to the more intensive engagement of advocacy work by patient organisations and “treatment activism”. It should be noted that the health sciences are a widely diverse field, with a multitude of research topics, methodologies and procedures. Not all research in the health sciences is suitable for including citizen science. Participatory approaches to research, while commendable and useful in many cases, are not mandatory or necessarily appropriate in every context. It falls on researchers (and support staff) to decide if and when and how to carry out citizen science within their research projects. The document is based on a literature review of academic publications regarding citizen science in the health sciences and a set of interviews with practitioners of citizen science in Portugal and at the Vall D’Hebron Research Institute (VHIR) in Barcelona. We are profoundly grateful to the researches and science officers who shared their experiences with us: Sara Mas from Vall D’Hebron Research Institute (VHIR), Maria João Leão from the Instituto de Tecnologia Química e Biológica António Xavier (ITQB NOVA) and Programa Ciência + Cidadã, Isabel Gordo, Karina Xavier and Patrícia Morais from the Gulbenkian Institute for Molecular Medicine (GIMM), Ana Rita Álvaro from the Center for Neuroscience and Cell Biology at the University of Coimbra (CNC), Diana Sousa and Francisco Rocha from Sociedade Portuguesa de Inovação (SPI). The second version of this document benefited from the revision by Cristina Luís, head of the Portuguese Network of Citizen Science, and additional inputs collected at the Encontro Nacional de Ciência Cidadã (Oeiras, November 2025).

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.