Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives
J. Patrick Woolley, Michelle L. McGowan, Harriet J. A. Teare, Victoria Coathup, Jennifer R. Fishman, Richard A. Settersten, Sigrid Sterckx, Jane Kaye & Eric T. Juengst
BMC Medical Ethics 17 (1):1 (2016)
AbstractThe 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.
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References found in this work
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From “Personalized” to “Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.Eric Juengst, Michelle L. McGowan, Jennifer R. Fishman & Richard A. Settersten - 2016 - Hastings Center Report 46 (5):21-33.
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Citations of this work
The Rise of Citizen Science in Health and Biomedical Research.Andrea Wiggins & John Wilbanks - 2019 - American Journal of Bioethics 19 (8):3-14.
Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations.Mark A. Rothstein, John T. Wilbanks, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Megan Doerr, Barbara J. Evans, Catherine M. Hammack-Aviran, Michelle L. McGowan & Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (S1):196-226.
Meeting the Needs of Underserved Populations: Setting the Agenda for More Inclusive Citizen Science of Medicine.Amelia Fiske, Barbara Prainsack & Alena Buyx - 2019 - Journal of Medical Ethics 45 (9):617-622.
Public Trust and ‘Ethics Review’ as a Commodity: The Case of Genomics England Limited and the UK’s 100,000 Genomes Project. [REVIEW]Gabrielle Natalie Samuel & Bobbie Farsides - 2018 - Medicine, Health Care and Philosophy 21 (2):159-168.
Community Engagement and Field Trials of Genetically Modified Insects and Animals.Carolyn P. Neuhaus - 2018 - Hastings Center Report 48 (1):25-36.
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