BMC Medical Ethics 17 (1):1 (2016)

Authors
Sigrid Sterckx
University of Ghent
Abstract
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.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
ISBN(s)
DOI 10.1186/s12910-016-0117-1
Options
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Translate to english
Revision history

Download options

PhilArchive copy


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 55,968
Through your library

References found in this work BETA

The Idea Of An Overlapping Consensus.John Rawls - 1987 - Oxford Journal of Legal Studies 7 (1):1-25.
Scientific Research is a Moral Duty.J. Harris - 2005 - Journal of Medical Ethics 31 (4):242-248.

View all 10 references / Add more references

Citations of this work BETA

View all 17 citations / Add more citations

Similar books and articles

The Broad Challenge of Public Engagement in Science.Rinie Est - 2011 - Science and Engineering Ethics 17 (4):639-648.
Science, Democracy, and the Right to Research.Mark B. Brown & David H. Guston - 2009 - Science and Engineering Ethics 15 (3):351-366.
The Public and Geoengineering Decision-Making: A View From Confucian Political Philosophy.Pak-Hang Wong - 2013 - Techné: Research in Philosophy and Technology 17 (3):350-367.

Analytics

Added to PP index
2016-06-05

Total views
32 ( #319,613 of 2,403,496 )

Recent downloads (6 months)
3 ( #256,481 of 2,403,496 )

How can I increase my downloads?

Downloads

My notes