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

Abstract

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.

An exploration of citizen science for population health research in retail food environments

“…Wooley and colleagues reflect on the level of citizens' participation, engagement and involvement, and consider "classic citizen science" to represent both participation and engagement, while "extreme citizen science" reflects participation, engagement and involvement. 4 Further, Den Broeder and colleagues have explained how citizen science for public health can be classified according to its aims (investigation, education, promoting collective goods, and/or action); its approaches (extreme citizen science, where citizens lead the entire research process, versus participatory citizen science, where citizens participate in problem definition and data collection, distributed intelligence, and crowd sourcing); and its size (local versus mass). 3 This commentary explores how citizen science approaches can be used as part of population health intervention research, through experiences in one of our retail food environment research projects in Newfoundland and Labrador (NL) called Healthy Corner Stores NL (HCSNL).…”

“…In health research, the extent to which members of the public, as a public, are engaged varies, and the effectiveness and inclusiveness of the engagement depends on researchers' intent and purpose. 4 Particularly for research that involves experiences in the everyday, such as people's food shopping in retail settings, public engagement is a way to incorporate processes of democratic deliberation and collective decision making. 5 In ideal situations, public engagement generates mutual benefit between researchers and non-researchers, but this might not always be the case.…”

“…4,7 A 2013 European green paper on citizen science defined it as "the general public engagement in scientific research activities when citizens actively contribute to science either with their intellectual effort or surrounding knowledge or with their tools and resources". 8 Citizens have successfully advanced scientific projects for more than a century; one of the earliest documented projects to use citizen science is the Christmas Bird Count, a project running since 1900 in which thousands of volunteers across North America collect wildlife survey data.…”

“Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research

“…Twenty-five years later, a generation of genome scientists has prospered from these platforms, in both academic and commercial settings. Most have come to value the 'translational' efficiencies that a more institutionalized genomic research environment affords, and collaborate in and promote the Human Genome Project's even more consolidated progeny, such as the SNP Consortium, the International HapMap Project, the eMERGE Consortium, ENGAGE, H3Africa, and now the White House Precision Medicine Initiative (Choudhury et al, 2014;White House, 2015;Woolley et al, 2016). Meanwhile, the landscape of genomic research is changing again, in ways that challenge the professional culture of science from a distinctly different direction.…”

Collective organization of discourse expertise using information technology – CODE IT!

“…While these have highlighted the advantages of citizen involvement in science, they have also triggered debate [18]. Legal and ethical questions have been raised regarding data security [26], the risk of harming participating citizens [23] or using them only as a free labor for scientific research projects. In the present research project, we partnered with a local school to assess the suitability of web-based citizen science in a controlled setting.…”