We concur with Baum and colleagues (2009) on the importance of pandemic planners taking explicit steps to employ public engagement methodologies. Thus far, as Baum and colleagues note, there have b...

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6–8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest (...) to offer moral guidance on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness. (shrink)

Public engagement is one of the fundamental pillars of the European programme for research and innovation _Horizon 2020_. The programme encourages engagement that not only fosters science education and dissemination, but also promotes two-way dialogues between scientists and the public at various stages of research. Establishing such dialogues between different groups of societal actors is seen as crucial in order to attain epistemic as well as social desiderata at the intersection between science and society. However, whether (...) these dialogues can actually help attaining these desiderata is far from obvious. This paper discusses some of the costs, risks, and benefits of dialogical public engagement practices, and proposes a strategy to analyse these argumentative practices based on a three-tiered model of epistemic exchange. As a case study, we discuss the phenomenon of vaccine hesitancy, arguably a result of suboptimal public engagement, and show how the proposed model can shed new light on the problem. (shrink)

Scheinerman (2023) proposes a Citizen’s Jury on human germline genome editing (HGGE) to promote more inclusive public engagement, agenda setting and governance. She argues these juries should work...

This paper considers how parents engage with a large, internationally supported childhood pneumococcal vaccine trial in The Gambia. Current analysis and professional reflection on public engagement is strongly shaped by the imperatives of public health and research institutions, and is thus couched in terms of acceptance and refusal, and . In contrast Gambian parents in the extreme, of free medical treatment, versus onepublic engagement with science’ in a globalized context might be recast, with implications for debates (...) in biomedical ethics, and the sustainability of public participation in medical research. (shrink)

The tension between the public and the private spheres is not new: while feminists have long called for public protection to be extended to the private sphere, liberals argue for the...

Conley et al. (2023) analyze the attempts at public engagement (PE) by five governance groups. These projects were conducted by organizations that endorse both the goals and values of PE. The autho...

This introduction to the special issue on “Medicine, Health, and Publics” argues that a rhetorical understanding of publics offers conceptual, methodological, and practical benefits to health and medical humanities scholars.

It is easy to call for public engagement (or dialogue) around difficult, morally fraught policy topics such as synthetic biology, but it is quite another thing to make sure that the deliberation is meaningful, as Kaebnick, Gusmano, and Murray aptly insist it should be. The surveys, focus groups, and public dialogues that have been held about synthetic biology to date show a very low level of public knowledge about it. Focus group findings also suggest that the (...) in­herent uncertainty and complexity surrounding synthetic biology give rise to greater ambivalence moving forward. The Science and Technology Innovation Program at the Woodrow Wilson International Center for Scholars and Hart Research Associates presented respondents with a “balanced description” of synthetic biology in nation­wide phone surveys and eight sessions of focus groups and found that, after respondents received information, the percentage saying that the risks outweighed the ben­efits consistently increased.In my view, the Hart research suggests three very im­portant conclusions about how best to structure public deliberation. First, information about uncertainty may not inform the public in any meaningful way. Second, the purpose of assessing public opinion and conduct­ing public deliberation is crucially important. Third, as Kaebnick, Gusmano, and Murray point out, the type and framing of the information given and the timing of the discussion matters a great deal for shaping the content. (shrink)

Timely public engagement in science presents a broad challenge. It includes more than research into the ethical, legal and social dimensions of science and state-initiated citizen’s participation. Introducing a public perspective on science while safeguarding its public value involves a diverse set of actors: natural scientists and engineers, technology assessment institutes, policy makers, social scientists, citizens, interest organisations, artists, and last, but not least, politicians.

The idea of conducting “upstream public engagement,” using nanotechnology as a test case, has been subject to criticism for its lack of any link to the political system. Drawing on the theoretical tools provided by Habermas, this article seeks to explore such a “link”, focusing specifically on the capacity of civil society organizations to distil, raise and transmit societal concerns in an amplified form to the public spheres at the European Union level. Based on content analysis and (...) semi-structured interviews with relevant actors, this article examines the evolution of CSO approaches towards nanotechnology over the past decade and investigates whether and how upstream public engagement could contribute to more vibrant public spheres and facilitate the formation of communicative power. The answer to these questions is twofold: on the one hand, moving public engagement “upstream” enables CSOs to be better informed and to become part of the debates more quickly. A “green alliance” is taking shape, which calls for more stringent regulation on nanomaterials. On the other hand, upstream public engagement has turned out to be unsuccessful in generating substantial and sustained interest. A number of CSOs have quit this field in frustration at the tokenistic engagement and out of fatigue after the intense lobbying battle for Registration, Evaluation, Authorisation and Restriction of Chemicals. (shrink)

This letter responds to the article “The Social Risks of Science,” by Jonathan Herington and Scott Tanona, published in the November‐December 2020 issue of the Hastings Center Report.

Imprecise definition of key terms in the “public participation” domain have hindered the conduct of good research and militated against the development and implementation of effective participation practices. In this article, we define key concepts in the domain: public communication, public consultation, and public participation. These concepts are differentiated according to the nature and flow of information between exercise sponsors and participants. According to such an information flow perspective, an exercise’s effectiveness may be ascertained by the (...) efficiency with which full, relevant information is elicited from all appropriate sources, transferred to all appropriate recipients, and combined to give an aggregate/consensual response. Key variables that may theoretically affect effectiveness—and on which engagement mechanisms differ—are identified and used to develop a typology of mechanisms. The resultant typology reveals four communication, six consultation, and four participation mechanism classes. Limitations to the typology are discussed, and future research needs identified. (shrink)

From their interpretation of the Australian Citizens’ Jury on genome editing, Scheinerman (2023) concludes that inclusive and diverse deliberative processes of public engagement have salient benefi...

In this article, we explore the concept of a “right not to know” on a population rather than individual level. We argue that a population level “right not to know” is a useful concept for helping to define the appropriate boundaries of public engagement initiatives in the emerging public health genomics context.

Timely public engagement in science presents a broad challenge. It includes more than research into the ethical, legal and social dimensions of science and state-initiated citizen’s participation. Introducing a public perspective on science while safeguarding its public value involves a diverse set of actors: natural scientists and engineers, technology assessment institutes, policy makers, social scientists, citizens, interest organisations, artists, and last, but not least, politicians.

James Wynn’s timely investigation highlights scientific studies grounded in publicly gathered data and probes the rhetoric these studies employ. Many of these endeavors, such as the widely used SETI@home project, simply draw on the processing power of participants’ home computers; others, like the protein-folding game FoldIt, ask users to take a more active role in solving scientific problems. In Citizen Science in the Digital Age: Rhetoric, Science, and Public Engagement, Wynn analyzes the discourse that enables these scientific ventures, (...) as well as the difficulties that arise in communication between scientists and lay people and the potential for misuse of publicly gathered data. (shrink)

The timing of this special issue of AJOB probing whether public engagement (PE)1 might help achieve equity in genomics is no coincidence. While many issues discussed by the authors are not entirely...

In the burgeoning debate about neuroscience’s role in contemporary society, the issue of brain optimization, or the application of neuroscientific knowledge and technologies to augment neurocognitive function, has taken center stage. Previous research has characterized media discourse on brain optimization as individualistic in ethos, pressuring individuals to expend calculated effort in cultivating culturally desirable forms of selves and bodies. However, little research has investigated whether the themes that characterize media dialogue are shared by lay populations. This article considers the relationship (...) between the representations of brain optimization that surfaced in a study of British press coverage between 2000 and 2012 and interviews with forty-eight London residents. Both data sets represented the brain as a resource that could be manipulated by the individual, with optimal brain function contingent on applying self-control in one’s lifestyle choices. However, these ideas emerged more sharply in the media than in the interviews: while most interviewees were aware of brain optimization practices, few were committed to carrying them out. The two data sets diverged in several ways: the media’s intense preoccupation with optimizing children’s brains was not apparent in lay dialogue, while interviewees elaborated beliefs about the underuse of brain tissue that showed no presence in the media. This article considers these continuities and discontinuities in light of their wider cultural significance and their implications for the media–mind relationship in public engagement with neuroscience. (shrink)

Heart Robot was a public engagement project funded by the Engineering and Physical Sciences Research Council. The aim of the project was to challenge cultural perceptions of robots, and to stimulate thought and debate in members of the general public around research in the field of social and emotional robotics. Fusing the traditions of Bunraku puppetry, the technology of animatronics and the field of artificial emotion and social intelligence, Heart Robot presented a series of entertaining, thought-provoking, and (...) moving performances at fourteen events in the south-west region of the UK between May and December 2008. This paper presents a summary of the independent evaluation of the project. Keywords: Robot, Puppet, Public Engagement, Social Robots, Science-art collaboration. (shrink)

While the realm of bioethics has traditionally focused on the rights of the individual and held autonomy as a defining principle, public health ethics has at its core a commitment to the promotion of the common good. While these two domains may at times conflict, concepts arising in one may also be informative for concepts arising in the other. One example of this is the concept of a “right not to know.” Recent debate suggests that just as there is (...) a “right to know” information about one's genetic status, there is a parallel “right not to know” when it comes to genetic information that if communicated, could be detrimental to an individual's social or psychological well-being. As new genetic technologies continue to change the nature of genetic testing and screening, it is crucial that normative frameworks to guide and assess genetic public health initiatives be developed. In this context, the question of whether a “right not to know” may also be said to exist for populations on a public health level merits attention. (shrink)

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid (...) models that combine elements of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

Public engagement in science and technology has grown in importance as developments in science and technology make increasingly significant impacts on people's lives. Now, efforts to engage publics in social decision-making or consensus-building regarding science and technology involve participation, learning or deliberation opportunities, as well as interactive or coproductive efforts among various sectors in society based on the recognition of scientific activities as a part of social operations - even those performed by scientific communities. We have conducted a (...) community engagement program in the HapMap project, the international human genome program, in Japan since 2002. Consequent upon our various approaches to engage Japanese publics, a range of observations were made, such as that: public engagement is not yet recognized or institutionalized in Japan; there is a wide gap between science and society; and the implications of public engagement in a Japanese context have not been examined enthusiastically, especially from the perspectives of political decision making, social consensus-building or self-determination. In this paper, we provide an overview of public engagement in Japan, and discuss issues and challenges raised by the HapMap community engagement project. We also discuss the implications of public engagement for social decision-making and self-determination, and explore the prospects for public engagement in science and technology in Japan. (shrink)

This paper investigates the dynamic and performative construction of publics in public engagement exercises. In this investigation, we, on the one hand, analyse how public engagement settings as political machineries frame particular kinds of roles and identities for the participating publics in relation to ‘the public at large’. On the other hand, we study how the participating citizens appropriate, resist and transform these roles and identities, and how they construct themselves and the participating group in (...) relation to wider publics. The empirical basis of our argument is a discussion of four different kinds of participation events in Austria. Building on these observations we develop conclusions about the public up-take of public participation in technoscience and the role of public engagement in current techno-political cultures. (shrink)

Conley and colleagues (2023) explore how calls for broad public engagement (PE) in the case of heritable human genome editing are being put into action, reviewing the activities of five different i...

In a recent public engagement study on heritable human genome editing (HHGE) conducted among South Africans, participants approved of using HHGE for serious health conditions—viewing it as a means of bringing about valuable social goods—and proposed that the government should actively invest resources to ensure everyone has equal access to the technology for these purposes. This position was animated by the view that future generations have a claim to these social goods, and this entitlement justified making HHGE available (...) in the present. This claim can be ethically justified in the Ubuntu ethic (deriving from South Africa) as it (a) emphasizes the interests of the community, and (b) espouses a metaphysical conception of the community that transcends the present generation and includes past and future generations. On this basis, a compelling claim can be made on behalf of prospective persons in favor of equal access to HHGE. (shrink)

As public attitude research evolves, often becoming more complex and variable, we are coming to understand that public attitudes are also more complex and variable than can often be captured by a single opinion poll, and more sophisticated forms of analyses are needed that look not just at a breadth of attitudes, but at a breadth of publics. The Australian Department of Industry undertook a public attitude study in 2012 that was not only longitudinal, looking at changes (...) in attitudes towards nanotechnologies, but also looking at the values or worldviews that influence attitudes. The findings allowed for a segmentation of the public, into four key segments, with distinct homogenous attitudes. This allows for not just a deeper understanding of the diversity of views that exist and the worldviews that influence them, but challenges engagement practitioners to ensure they have a broad representation of participants with different attitudes and do not favour one or two segments only. (shrink)

The “Open Air Laboratories” (OPAL) is a large, England-wide environmental public engagement (PE) project based on the “citizen science” model. It is designed to involve people of all backgrounds and abilities in the production of environmental science and in the process to educate and raise awareness and enthusiasm about nature and its importance. This article draws on a series of interviews with scientists and science communicators involved in the project to explore their motivations and aims for the project (...) and what they see as the goals of public engagement generally. We find a varied and nuanced array of motivations and aims that interviewees cite for taking part in the project, pointing toward a reevaluation of traditional ways of understanding the value of public engagement, policy relevance, and dialogue within public engagement. Especially relevant in relation to thinking about the policy relevance of PE is our conclusion that there are many different ways of thinking about the value of PE, characterized in this article as “the neglected middle.”. (shrink)

Some patients tolerate a given drug well, without adverse reactions. For others, though, an identical dose of the same medication can have toxic effects. Moreover, while a drug can be effective at relieving symptoms for some patients, it may fail to do the same for others suffering with the same disease. With such variability in treatment responses, tailoring medical interventions to individual patients has long been an aspiration of medicine. Until recently, however, medicine lacked a clear understanding of the biological (...) reasons for human variation in drug response. Attempting to adjust treatment to the individual patient, physicians have relied primarily on direct observation, trial-and-error, and, ultimately... (shrink)

Important scientific, ethical and sociological debates are emerging over the trans-humanist goal to achieve therapeutic treatments to ‘cure’ the debilitation of age-related illness and extend the healthy life span of individuals through interventive biogerontological research. The scientific and moral discourses surrounding this contentious scientific field are mapped out, followed by a normative argument favouring ‘strong’ deliberative democratic control of human life extension research. This proposal incorporates insights from constructive and participatory technology assessment, upstream public engagement and back-casting analysis; (...) to outline a programme of participatory approaches to encourage two-way dialogue between scientific and citizen perspectives, and foster the long-term deliberative democratic governance of this developing field. (shrink)

This paper explores how scientists perceive public engagement initiatives. By drawing on interviews with nanoscientists, it analyzes how researchers imagine science–society interactions in an early phase of technological development. More specifically, the paper inquires into the implicit framings of citizens, of scientists, and of the public in scientists’ discourses. It identifies four different models of how nanoscientists understand public engagement which are described as educational, paternalistic, elitist, and economistic. These models are contrasted with the dialog (...) model of public engagement promoted by social scientists and policymakers. The paper asks if and in what ways participatory discourses and practices feed back into scientists’ understandings, thus co-producing public discourses and science. (shrink)

Many researchers experiment with participatory settings to increase public engagement in research and innovation (R&I). Because of their temporary nature, it often remains unclear how such participatory experiments can contribute to structural change. This paper empirically explores options for bridging this gap. It analyzes how participants can be supported to act as institutional entrepreneurs to actively promote public engagement in R&I. To draw lessons, we analyze empirical material gathered on nineteen Social Labs which were set up (...) to promote the uptake of Responsible Research and Innovation in a European R&I funding program (Horizon 2020). Involvement of motivated participants, insight in their institutional context, and specific methods and management choices that enhance a sense of agency are identified as essential for organizing change. These findings and the resulting framework of interventions may prove valuable for further (action) research into the institutionalization of public engagement in R&I. (shrink)

Midstream modulation is a form of public engagement with science which benefits from strategic application of science and technology studies (STS) insights accumulated over nearly 20 years. These have been developed from STS researchers’ involvement in practical engagement processes and research with scientists, science funders, policy and other public stakeholders. The strategic aim of this specific method, to develop what is termed second-order reflexivity amongst scientist-technologists, builds upon and advances earlier more general STS work. However this (...) method is focused and structured so as to help generate such reflexivity—over the ‘upstream’ questions which have been identified in other STS research as important public issues for scientific research, development and innovation—amongst practising scientists-technologists in their specialist contexts (public or private, in principle). This is a different focus from virtually all such previous work, and offers novel opportunities for those key broader issues to be opened up. The further development of these promising results depends on some important conditions such as identifying and engaging research funders and other stakeholders like affected publics in similar exercises. Implementing these conditions could connect the productive impacts of midstream modulation with wider public engagement work, including with ‘uninvited’ public engagement with science. It would also generate broader institutional and political changes in the larger networks of institutional actors which constitute contemporary technoscientific innovation and governance processes. All of these various broader dimensions, far beyond the laboratory alone, need to be appropriately open, committed to democratic needs, and reflexive, for the aims of midstream modulation to be achieved, whilst allowing specialists to work as specialists. (shrink)

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)

Rural development policies are often inspired by narratives that are difficult to challenge because they are based on an apparently obvious and coherent reading of reality. Research may confront such narratives and trigger debates outside the academic community, but this can have a feedback effect and lead to a simplistic or biased posture in research. This article analyzes a research-based initiative that questioned a commonly held narrative in large-scale irrigation schemes in Morocco concerning the structural weaknesses of farmer-led collective action. (...) This initiative conceived an alternative narrative of farmer-led collective action, based on research and actions undertaken in collaboration with the farmers. The article assesses to what extent it was possible to design this narrative and to draw on it to orient research activities, actions with farmers and public engagement, without impairing the quality of the research process. The alternative narrative was designed and diffused based on three intertwined activities: (1) the identification and analysis of farmer-led collective actions, (2) the diffusion of information on successful farmer-led collective actions especially through the production of videos, and (3) exchanges with and between local farmers’ organizations. The alternative narrative that resulted from these activities emphasizes the potentialities of farmer-led collective action, and more broadly, the willingness and capabilities of many family farmers to play an active role in the governance of rural areas. The message of the alternative narrative and the distinction made between the research articles and videos in both their content and role ensured that research did not fall into simplistic or biased analyses. The alternative narrative also became a key to renewed relations between farmers and researchers and helped design training for students that pay more attention to local dynamics. In a situation in which scheme-level organizations show limited interest in reflexive enquiry, this initiative proposes some stepping stones to make it possible for changing narratives to accompany changing relations between actors. (shrink)

Debates about the regulatory requirements surrounding the introduction of nanotechnology products have, at least in Australia, remained largely within disciplinary boundaries and industry and academic circles. This paper argues for a more interdisciplinary and inclusive upstream debate about the introduction of ethical, regulatory and legal frameworks that may avoid the loss of public trust that has characterised the introduction of many new technologies in the past. Insights from risk-perception theory and research are used to introduce the notion of risk (...) as narrative as a framework for action. This paper suggests three main strategies for moving forward; drawing insights from the “trust gap” experiences of other new technologies; the application of the active form of the precautionary principle; and, the creation of nano-futures that meet both community and industry values through effective public engagement. (shrink)

Advancing neuroscience is one of many topics that pose a challenge often called “the alignment problem”—the challenge, that is, of assuring that science policy is responsive to and in some sense squares with the public's values. This issue of the Hastings Center Report launches a series of scholarly essays and articles on the ethical and social issues raised by this vast body of medical research and bench science. The series, which will run under the banner “Neuroscience and Society,” is (...) supported by the Dana Foundation and seeks to promote deliberative public engagement, broadly understood, about neuroscience. As a social goal, deliberative public engagement is both ubiquitous and elusive—called for everywhere yet difficult to undertake at a national level on a complex scientific topic. To be meaningful, deliberative public engagement must occur in many locations in a society and be carried forward by many actors. Scholarly writing might contribute in several ways. (shrink)