Participation is everywhere in the life sciences, medicine and health care. Patients establish social networks to share their experiences, symptoms and cures. ‘Lay’ people join professional scientists for the advancement of large-scale research projects in fields as diverse as evolutionary sciences, genomics, disease research, and microbiomics. Patients – quite controversially – organise their own research studies. ‘Biohackers’ tinker with cells and molecules and not just with lines of code. Other people want to contribute to research that could save lives, or simply enjoy being involved in science-related tasks.
What should we make of these developments? Do they amount to a ‘reinvention of discovery’, or a destruction of medicine as we know it? Do they contribute to a ‘democratisation’ of science – and what does this term ‘democratisation’ mean in this context? Or does the current buzz around citizen science conceal a concerning development towards the increasing reliance on unpaid labour?
Our research project on the social, ethical and regulatory aspects of citizen science at UKSH/King’s college investigates under what circumstances citizen science produces ‘better’ results than other kinds of biomedical research, and what ‘better science’ is supposed to mean in the first place. We look at how citizen science in the field of medicine is situated within the broader context of technology-driven changes in sharing practices, forms of scientific labour, scientific citizenship and research organisation. We take a case-study based approach to map the great variety of forms of citizen participation in science, the degree of involvement of ‘lay’ people in the different phases of research, and the benefits of these initiatives. We will also develop ethical guidelines and policy proposals for the ethical use of citizen science.