Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives

BMC Medical Ethics

Debate

Eric T. Juengst¹  Victoria Coathup²  Jane Kaye²  Harriet J. A. Teare²  Sigrid Sterckx³  Jennifer R. Fishman⁴  Richard A. Settersten⁵  Michelle L. McGowan⁶  J. Patrick Woolley⁷ 

[1]333 MacNider Hall, Campus Box 7240, University of North Carolina, Chapel Hill, 333S. Columbia Road, 27599-7240, Chapel Hill, NC, USA

[2]Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Ewert House, Ewert Place, Banbury Road, OX2 7DD, Oxford, UK

[3]Department of Philosophy & Moral Sciences Ghent University, Blandijnberg 2, 9000, Gent, Belgium

[4]McGill University, Social Studies of Medicine, 3647 Peel, Room 207, H3A 1X1, Montreal, Quebec, Canada

[5]School of Social and Behavioral Health Sciences, Oregon State University, Corvallis, Oregon, 123 Women’s Building, 97331-8577, Corvallis, OR, USA

[6]The Pennsylvania State University, 128B Willard Building, 16802, University Park, PA, USA

[7]University of Oxford, Harris Manchester College, Mansfield Road, OX1 3TD, Oxford, UK

关键词: Care.data;    Citizenship;    Citizen science;    Crowdsourcing;    Big data;    National health research;    Participant centric initiatives;    Precision medicine;    Public engagement;    Recruitment;   

DOI  :  10.1186/s12910-016-0117-1

 received in 2015-12-18, accepted in 2016-05-23,  发布年份 2016

来源: Springer

【 摘 要 】

BackgroundThe 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.DiscussionWe 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.SummaryWe 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.

【 授权许可】

CC BY   
© The Author(s). 2016