Ethical aspects of Citizen Science: good practices and institutional interventions
This webinar provided participants with a specific Citizen Science (CS) case study, which implies different levels of ethical and legal challenges, including GDPR compliance and various ethics dimension (i.e. research integrity, gender perspective, open access, public engagement, etc.). JoinUs4Health presented the project's methodology on engaging study participants, citizens and other social groups from different countries in health research through an integrative way of innovation and citizen engagement in cohort research, combining Responsible Research and Innovation (RRI) with crowdsourcing in a co-creative manner, highlighting the most sensitive aspects of its implementation to focus the participants’ attention on the needed interventions.
ETHNA System then presented its flexible ethical governance system, illustrating its optimal composition for the chosen case: which “columns” should be considered (code of ethics and good practices, ethics committee on R&I, ethics line) and which building brick to be implemented (research integrity, gender perspective, public engagement, open access), according to the issues raised by the case study as well as the institutional commitment and capabilities of the hosting organisation in these terms.
This event served a dual purpose: on one hand it gave participants an understanding of the necessary framework within which embedding particular CS projects/activities (as the chosen case study), on the other hand it outlined a customized “lookalike” institutional intervention to address the ethical and legal challenges raising from the case study.