Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives
J Patrick Woolley, Michelle L McGowan, Harriet JA Teare, Victoria Coathup, Jennifer R Fishman, Richard A Settersten, Sigrid Sterckx, Jane Kaye, Eric T Juengst
BMC Medical Ethics | BMC | Published : 2016
BACKGROUND: 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 ..View full abstract
Awarded by National Human Genome Research Institute of the U.S. National Institutes of Health
Awarded by NATIONAL HUMAN GENOME RESEARCH INSTITUTE
This paper has its origins in remarks made by EJ at the 2015 5th Anniversary HeLEX conference, "Translation in Health Care: Exploring the Impact of Emerging Technologies," and benefited from discussion by conferees. Support for JPW's contributions to this paper was provided through a fellowship by Harris Manchester College, University of Oxford, and through a Visiitorship at the Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health.Support for MM's contributions to this paper was provided by the National Human Genome Research Institute of the U.S. National Institutes of Health through research grant # R01 HG005277.