Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.
The language of "participant-driven research," "crowdsourcing" and "citizen science" is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more "democratic," "patient-centric," or "lay" alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs are embracing this populist rhetoric to encourage wider public participation.



We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of "citizen science" outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of "public engagement" when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the "care.data" project of the National Health Service in England, and its proactive uses in the "Precision Medicine Initiative" of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of "citizen science," the contexts in which it is used, and its demands with respect to participation, engagement, and governance.
University of Oxford, Harris Manchester College, Mansfield Road, Oxford, OX1 3TD, UK.
J Patrick
JP
Woolley
The Pennsylvania State University, 128B Willard Building, University Park, PA, 16802, USA.
Michelle L
ML
McGowan
Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Ewert House, Ewert Place, Banbury Road, Oxford, OX2 7DD, UK.
Harriet J A
HJ
Teare
Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Ewert House, Ewert Place, Banbury Road, Oxford, OX2 7DD, UK.
Victoria
V
Coathup
McGill University, Social Studies of Medicine, 3647 Peel, Room 207, Montreal, Quebec, H3A 1X1, Canada.
Jennifer R
JR
Fishman
School of Social and Behavioral Health Sciences, Oregon State University, Corvallis, Oregon, 123 Women's Building, Corvallis, OR, 97331-8577, USA.
Richard A
RA
Settersten
Department of Philosophy & Moral Sciences Ghent University, Blandijnberg 2, 9000, Gent, Belgium.
Sigrid
S
Sterckx
Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Ewert House, Ewert Place, Banbury Road, Oxford, OX2 7DD, UK. jane.kaye@law.ox.ac.uk.
Jane
J
Kaye
333 MacNider Hall, Campus Box 7240, University of North Carolina, Chapel Hill, 333S. Columbia Road, Chapel Hill, NC, 27599-7240, USA.
Eric T
ET
Juengst
D035843:Biomedical Research; D003256:Community Participation; D004739:England; D006076:Government; D006801:Humans; D007802:Language; D018579:Patient Selection / Q000941:ethics; D057285:Precision Medicine; D011639:Public Opinion; D012586:Science; D012941:Social Responsibility; D012945:Social Values; D057170:Translational Research, Biomedical / Q000941:ethics; D014481:United States
Big data; Care.data; Citizen science; Citizenship; Crowdsourcing; National health research; Participant centric initiatives; Precision medicine; Public engagement; Recruitment