In biomedicine, initiatives subsumed under the heading of “citizen science” are highly diverse, ranging from projects run by academic institutions, private companies, patient associations, or individual citizens. They generally involve “lay people” collecting or analysing large and diverse datasets. Some initiatives are designed to obtain data about the user, or to encourage volunteers to produce data. This development coincides with increasing attention to participatory processes and “patient empowerment” in medicine more broadly, without which – as policy makers explicitly state – healthcare systems will not be sustainable.
Despite the great variety in the meanings and uses of citizen science, one thing is clear: It is not without precedents. So-called “amateurs” have long made substantive contributions the creation of scientific and medical knowledge. What, then, explains the large amount of attention that citizen science, as a concept and as a phenomenon, has received since the end of the 20th century?
This one-day conference, which is organised by three different projects concerned with citizen science in Exeter (S. Leonelli), Geneva (B. Strasser), Kiel (A. Buyx), and London (B. Prainsack), will take a critical look at the role of citizen science in biomedical research in the 21st century. These projects are grounded in the sociology, history, ethics, and philosophy of science and medicine, and our aim is to facilitate a discussion that is at once historically, theoretically and empirically informed. We aim in particular to address the following questions:
– What are the differences between “lay” participation in scientific knowledge production in different historical eras?
– What are the discipline-specific differences, if any?
– What social, political, and economic factors have facilitated or hindered citizen science at the programmatic, political, and/or empirical levels?
– What forms do practices of participation take in different citizen science projects?
– How are they dependent on political and economic factors?
– What is the understanding of citizenship that is implicitly or explicitly evoked within such projects, and how does this vary geographically and historically?
– To what extent do participatory approaches alter the conceptions of biomedicine as a science (e.g. on the epistemological level) for both, involved experts and participants?
– Are citizen science projects that assume that people’s contributions should be motivated by altruism alone elitist?
Do contemporary citizen science projects run the risk of increasing the visibility and power of privileged populations, while cementing the role of people in low-income countries and contexts as passive data contributors?
If you would like to participate in this discussion, please send your abstract of up to 500 words to firstname.lastname@example.org by 15 July 2016 at the latest. We welcome both empirically and conceptually focused contributions. Applicants will be notified whether or not their abstract has been accepted for oral presentation by 1 September 2016. We are delighted to say that Professor Barbara J. Evans at the University of Houston Law Center will provide the keynote address.