The ethics of citizen science in biomedicine

Background: Research in biomedicine and healthcare increasingly includes participatory initiatives and harnesses direct contributions from lay citizens in terms of data, samples, expertise and cognitive capacities. Many such practices are called 'citizen science' (CS). In our research project, (1) we explore the diversity of CS initiatives in biomedicine, including their underlying motivations and their main typologies; (2) describe and discuss emerging ethical challenges due to CS. Methodology: On the basis of a literature and websites review, we identified “stakes” associated with CS, i.e. reasons that explain why CS may lead to better biomedical science and elaborate a typology of initiatives. We then mapped each of these categories to an established framework of research ethics, the seven principles described by Emanuel et al. (2000). Results: We found that CS initiatives are seen as facilitating the uptake of network IT technologies in biomedical research and data-intensive research projects (esp. in genomics), and promote the establishment of infrastructure for a more precise and personalized medicine. CS is also seen as heralding the values of openness of peer-to-peer movements, turn innovation and discovery pipelines in “open systems” and reduce costs. Learning opportunities, empowerment of patients/citizens and citizen engagement in science also appear prominently among motivations for CS. There are few cases of genuinely participant-led research projects, however a wider variety of actors participates to such initiatives, including data scientists and biotech entrepreneurs. We found that CS initiatives rise novel ethical concerns regarding the assessment of societal value of research, informed consent, data privacy, and risks for participants, along with governance challenges, especially in genuinely participant-led projects. Discussion: By describing our research pipeline and our preliminary results, we propose that social science analysis and ethical reflection should be combined to study emerging trends in health systems and to propose actionable solutions for healthcare and biomedicine.