Besides offering opportunities in both clinical and non-clinical domains, the application of novel neuroimaging technologies raises pressing dilemmas. ‘Responsible Research and Innovation’ (RRI) aims to stimulate research and innovation activities that take ethical and social considerations into account from the outset. We previously identified that Dutch neuroscientists interpret “responsible innovation” as educating the public on neuroimaging technologies via the popular press. Their aim is to mitigate (neuro)hype, an aim shared with the wider emerging RRI community. Here, we present results of (...) a media-analysis undertaken to establish whether the body of articles in the Dutch popular press presents balanced conversations on neuroimaging research to the public. We found that reporting was mostly positive and framed in terms of (healthcare) progress. There was rarely a balance between technology opportunities and limitations, and even fewer articles addressed societal or ethical aspects of neuroimaging research. Furthermore, neuroimaging metaphors seem to favour oversimplification. Current reporting is therefore more likely to enable hype than to mitigate it. How can neuroscientists, given their self-ascribed social responsibility, address this conundrum? We make a case for a collective and shared responsibility among neuroscientists, journalists and other stakeholders, including funders, committed to responsible reporting on neuroimaging research. (shrink)

The emerging field of synthetic biology, the designing and construction of biological parts, devices and systems for useful purposes, may simultaneously resolve some issues and raise others. In order to develop applications robustly and in the public interest, it is important to organize reflexive strategies of assessment and engagement in early stages of development. Against this backdrop, initiatives related to the concept of Responsible Research and Innovation have also appeared. This paper describes such an initiative: the construction of future scenarios (...) to explore the plausibility and desirability of potential synthetic biology innovations. We guided teams of synthetic biology students who participated in the large international Genetically Engineered Machines competition, in constructing scenarios aimed at exploring the plausibility and desirability of potential synthetic biology innovations. In this paper we aim to examine to what extent, and how, constructing such future scenarios contributes to RRI. In order to do so, we conducted observations and interviews to understand what kind of learning and reflection was promoted by constructing the scenarios in terms of four dimensions, which are discussed prominently in the literature on RRI: anticipation, inclusion, reflexivity and responsiveness. While we focus on how constructing future scenarios can contribute to strengthening RRI at a project level, we also consider how far our experiment may foster RRI in the iGEM competition in general, and perhaps even inspire constructive collaboration between ‘social scientists’ and ‘natural scientists’ in the context of larger scientific research programmes. (shrink)

In response to calls for a research and innovation system that is more open to public scrutiny, we have seen a growth of formal and informal public engagement activities in the past decades. Nevertheless, critiques of several persistent routines in public engagement continue to resurface, in particular the focus on expert knowledge, cognitive exchange, risk discourse, and understandings of public opinion as being static. In an attempt to break out of these routines, we experimented with an innovative engagement format that (...) employs situated speculative prototyping to support citizens in contextualizing and discussing developments regarding—in this case—nanotechnology. This format invites participants to imagine and critically reflect on technological futures through collaborative prototyping and story-writing. In this paper, we outline five reconstructed contextualization patterns in which participants engaged during the format’s exercises and use these to assess the value of the format in the current engagement landscape. We show that situated speculative prototyping has potential in the realm of informal public engagement initiatives, taking an explorative approach, but also warn of ‘the designer fallacy’ as a prominent pitfall of prototyping that could reproduce techno-scientific framings and obstruct critical reflection on technological directions and implications if not treated with caution. (shrink)

The progressive introduction of emerging technologies, such as nanotechnology, has created a true testing ground for public engagement initiatives. Widespread experimentation has taken place with public and stakeholder dialogue and inclusive approaches to research and innovation more generally. Against this backdrop, Social Science and Humanities scholars have started to manifest themselves differently. They have taken on new roles in the public engagement field, including more practical and policy-oriented ones that seek to actively open the R&I system to wider public scrutiny. (...) With public engagement gaining prominence, there has been a call for increased reflexivity among SSH scholars about their role in this field. In this paper, we study our own roles and stakes as SSH scholars in a European-funded public engagement project on responsible nanotechnology. We introduce a general role landscape and outline five distinct roles that we—as SSH scholars—inhabited throughout the project. We discuss the synergistic potential of combining these five roles and elaborate on several tensions within the roles that we needed to navigate. We argue that balancing many roles requires explicit role awareness, reflexivity, and new competencies that have not been examined much in the public engagement literature so far. Our role landscape and exemplification of how it can be used to reflexively study one’s own practices may be a useful starting point for scholars who are seeking to better understand, assess, or communicate about their position in the public engagement field. (shrink)

Participation of end users in decision-making on science is increasingly practiced, as witnessed by the growing body of scientific literature on case evaluations. In the biomedical field, however, end-user participation in decision-making is rare. Some scholars argue that because patients are stakeholders and relevant experts, they could also provide important contributions to decision-making within the field of biomedical research. But what strategies could be used to effectively implement patient participation in decision-making on biomedical research? In this article, we analyze strategies (...) for patient participation and conclude that these can hardly be regarded effective because they do not ensure patients' structural influence on decision-making. We identify obstacles for effective patient participation, which seem to reflect a resilience of the current biomedical decision-making network. We subsequently elaborate on the concept of transition management in the search for clues on how to breach this resilience and change the network toward the inclusion of patients. (shrink)

Synthetic biology is an emerging technology that asks for inclusive reflection on how people frame the field. To unravel how we can facilitate such reflection, this study evaluates the Frame Reflection Lab. Building upon playfulness design principles, the FRL comprises a workshop with video-narratives and co-creative group exercises. We studied how the FRL facilitated frame reflection by organizing workshops with various student groups. Analysis of 12 group conversations and 158 mini-exit surveys yielded patterns in first-order reflection as well as patterns (...) in second-order reflection. Also patterns in participants’ framing of synthetic biology could be induced; participants’ viewpoints converged to some extent, yet with openness to individual viewpoint differences. Although the FRL method fortified the reflection processes of participants, the narratives and the workshop’s flexible format could inhibit the reflection too. Therefore, we advise designers of future frame reflection methods to apply stronger conversational facilitation and narratives of slightly mysterious yet identifiable narrators, in case e.g. video-narratives are created and used to scaffold the reflection process. Nevertheless, we argue that the use of a playful frame reflection method like the FRL could function well as a step to precede more application-specific deliberation or decision-making on synthetic biology and as a method for the collection of contemporary citizen viewpoints plus rationales underlying these, for the further responsible development of the emerging field. (shrink)

Synthetic biology is an emerging technology that asks for inclusive reflection on how people frame the field. To unravel how we can facilitate such reflection, this study evaluates the Frame Reflection Lab. Building upon playfulness design principles, the FRL comprises a workshop with video-narratives and co-creative group exercises. We studied how the FRL facilitated frame reflection by organizing workshops with various student groups. Analysis of 12 group conversations and 158 mini-exit surveys yielded patterns in first-order reflection as well as patterns (...) in second-order reflection. Also patterns in participants’ framing of synthetic biology could be induced; participants’ viewpoints converged to some extent, yet with openness to individual viewpoint differences. Although the FRL method fortified the reflection processes of participants, the narratives and the workshop’s flexible format could inhibit the reflection too. Therefore, we advise designers of future frame reflection methods to apply stronger conversational facilitation and narratives of slightly mysterious yet identifiable narrators, in case e.g. video-narratives are created and used to scaffold the reflection process. Nevertheless, we argue that the use of a playful frame reflection method like the FRL could function well as a step to precede more application-specific deliberation or decision-making on synthetic biology and as a method for the collection of contemporary citizen viewpoints plus rationales underlying these, for the further responsible development of the emerging field. (shrink)

During the past decade, patient participation became an important issue in the medical field, and patient participation in biomedical research processes is increasingly called for. One of the arguments for this refers to the specific kind of knowledge, called experiential knowledge, patients could contribute. Until now, participation of patients in biomedical research has been rare, and integration of patients’ experiential knowledge with scientific knowledge—in the few cases it takes place—occurs implicitly and on an ad hoc basis. This is illustrated by (...) describing and analyzing the activities of the German patient group on retinitis pigmentosa. The authors argue that to be able to optimize the use of experiential knowledge of patients in biomedical research, a systematic approach is required. Transdisciplinary research provides such an approach, systematically, explicitly, and deliberately integrating knowledge from different scientific and nonscientific sources. In this article, the concept of transdisciplinarity is elaborated upon. The authors propose a possible procedure, identify necessary conditions and skills, and evaluate the feasibility of its implementation and institutionalization. Finally, the authors introduce a recent research project to further investigate and implement transdisciplinary research in the biomedical field. (shrink)

Participatory action research (PAR) is a form of community-driven qualitative research which aims to collaboratively take action to improve participants’ lives. This is generally achieved through cognitive, reflexive learning cycles, whereby people ultimately enhance their wellbeing. This approach builds on two assumptions: (1) participants are able to reflect on and prioritize difficulties they face; (2) collective impetus and action are progressively achieved, ultimately leading to increased wellbeing. This article complicates these assumptions by analyzing a two-year PAR project with mothers of (...) disabled children from a South African urban settlement. Participant observation notes, interviews, and a group discussion served as primary data. We found that mothers’ severe psychological stress and the strong intersectionality of their daily challenges hampered participation. Consequently, mothers considered the project ‘inactionable’. Yet, many women quickly started expressing important individual and collective wellbeing transformations. To understand these ‘unlikely’ transformations, a feminist relational account, in particular, that of relational wellbeing, proves essential. We reflect on the consequences of these findings for the dominant PAR methodology and operationalization, and propose to sensitize future PAR with marginalized women by employing relational wellbeing as an overarching ontological awareness. (shrink)

Apart from the scientific unknowns and technological barriers that complicate the development of medical neuroimaging applications, various relevant actors might have different ideas on what is considered advancement or progress in this field. We address the challenge of identifying societal actors and their different points of view concerning neuroimaging technologies in an early phase of neuroimaging development. To this end, we conducted 16 semistructured interviews with societal actors, including governmental policy makers, health professionals, and patient representatives, in the Netherlands. We (...) show how the contextual aspects of applications and underlying features of the ideal health system determine the desirability. Neuroimaging developments are perceived as innovations that will optimize the current health system or as opportunities to change existing structures and practices of the current health system more radically. Insights into and understanding of these visions show incongruence between visions regarding desirable medical neuroimaging use and potential conflicting visions regarding the embedding of neuroimaging applications. We conclude that it is possible to prospectively identify incongruent visions and analyze when these visions will most likely come into conflict with each other. Such an analysis might provide a reflective space, beyond personal and political interest, suitable as a starting point for joint reflection and mutual learning in order to manage medical neuroimaging innovations towards more responsible applications. (shrink)

Public engagement is increasingly advocated and applied in the development and implementation of technological innovations. However, initiatives so far are rarely considered effective. There is a need for more methodological rigor and insight into conducive conditions. The authors developed an evaluative framework and assessed accordingly the effectiveness of a project of the Dutch Ministry of Health, Welfare and Sport in which the application of interactive policy making was piloted in medical biotechnology, among others, to increase the legitimacy and quality of (...) the policy agenda. Relevant societal actors, including citizens, were actively involved in an open-exchange, action and reflection process, integrating relevant knowledge. Although the project was overall evaluated as effective, some difficulties were faced. These were mostly related to the novel roles public engagement requires of principal actors. The article concludes that more research is needed on the position of the executing team and on overcoming tensions existing between different governance modes. (shrink)