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. (shrink)

The paper explores the possibilities for promoting epistemic justice in a South African university setting through a participatory action-based photovoice research project in which university resea...

the walls of the academy. The wall is defended by the idea that not only do experts possess knowledge beyond the ken of lay people, which is trivially true, but that there is an unbridgeable gulf between the two. The aim of this presentation, then, is to discuss the possibility of building a bridge between the ordinary educated citizen and the expert. The tool for this is the famous effort to disseminate scientific literacy, or more generally, any specific sophisticated literacy. (...) The subject-matter of this presentation, then, is scientific literacy, and the question is, how can it best be disseminated? Now the word "literacy" in expressions like "scientific literacy" and "computer literacy" may be meant literally or metaphorically. As I will try to show later on, if time permits, profound ambiguity and ambivalence reside here. The significance of all this remains to be seen. Let me first contrast any specific sophisticated literacy with elementary literacy, and center first on the elementary. It is of course the one that is denoted by the first two of the three r's, reading writing and arithmetic, the three skills teachers of the lower grades of elementary schools are supposed to transmit to their charges. Before discussing scientific literacy or computer literacy or any other specific sophisticated literacy, I will discuss this elementary literacy. My suggestion is that by advancing somewhat our knowledge of elementary literacy we can see what is specific to any specific literacy, however sophisticated it may be, but that there is more profit for understanding the nature of elementary literacy by examining specific cases. My thesis will be that any literacy, elementary or specific, is best achieved by guided, aided experimentation: the trainee should learn by trial and error.. (shrink)

Beginning in the 20th century, scientific research came to be dominated by a growing class of credentialed, professional scientists who overwhelmingly displaced the learned amateurs of an earlier time. By the end of the century, however, the exclusive realm of professional scientists conducting research was joined, to a degree, by “citizen scientists.” The term originally encompassed non-professionals assisting professional scientists by contributing observations and measurements to ongoing research enterprises. These collaborations were especially common in the environmental sciences, where citizen scientists (...) participated in counting wildlife and measuring environmental conditions. Later, patient groups began to play a more active role in supporting clinical trials and collecting health records from affected individuals. (shrink)