BMBF-Project “Social, ethical and regulatory aspects of ‘citizen science’ in biomedicine and bioscience”


Cooperation with the Department of Social Science, Health, and Medicine, King’s College London

Funder: German Federal Ministry of Education and Research (BMBF)

People: Prof. Barbara Prainsack, King’s College; Prof. Alena Buyx, Kiel University; Dr. Amelia Fiske, Kiel University; Dr. Lorenzo Del Savio, Kiel University/King’s College


Science has always taken place inside and outside the boundaries of established scientific institutions. While some forms of ‘citizen science’ (CS) date back to amateur natural history in the 18th and 19th century, opening up the practice of science to wider ranges of people is a result of deep-seated socio-technical changes. Online platforms in particular have facilitated the sharing of information, expertise, and tasks. The production of a wealth of personal data -- e.g. with mobile devices and wearables --  is increasingly seen as a strategic asset for research, especially in the life and health sciences. Countercultures and the Open Science movement are challenging the current organization of science and what are often perceived as its ‘elitist’ practices and modes of funding. There is also experimentation with new legal arrangements regarding intellectual property, patents, and the access to knowledge. Due to the long tradition of patient activism, and due to currently emerging ‘big data’-approaches in biomedicine and the health sciences, CS is seen by many as potentially very helpful in these fields. Data and sample collection, the surveillance of epidemics, and even the design of clinical trials and analyses are being devolved to patients and the ‘crowd’.

Early literature on public participation in science focused on the educational opportunities of citizens’ engagement and on democratic concerns regarding the responsiveness of science to the needs, preferences and values of citizens. Within the theoretical parts of the project, we will build on this literature; mapping how CS overlaps with other emerging phenomena and concepts such as lifetracking, patient self-care, etc. We will look at underlying social and technological developments and trends, and examine how CS is sometimes expected to produce better knowledge than ‘traditional’ science, how ‘better’ is defined in the first place, and what such debates can tell us about shifting understandings of ‘traditional’ and ‘emerging’ forms of science. 

As part of the more empirical parts of the project, we will investigate the structure, focus, and impact of CS initiatives in biomedicine and society and analyse the various forms of citizens’ involvement with scientific practice, using a case study approach. Aspects to consider will include the degree of agency, participation and control that ‘citizen scientists’ have in research planning and design, the production and evaluation of scientific results, and the public and commercial use of the knowledge they contribute to produce. Based on both our findings and our theoretical analysis, we will then discuss ethical and regulatory implications of the emerging field of CS in biomedicine and health science.

Amelia Fiske, PhD, is a senior research fellow at the Division of Biomedical Ethics. She works at the intersection of Medical Anthropology, Science and Technology Studies, and Political Ecologies. Her current work investigates the social, ethical, and regulatory aspects of citizen science in biomedicine.

Amelia holds a PhD in Cultural Anthropology from the University of North Carolina at Chapel Hill.