The public's considerations about implementing non-pharmaceutical interventions to manage a novel COVID-19 epidemic.

In the future, new variants of the SARS-CoV-2 virus might emerge and cause outbreaks. If this occurs, the implementation of non-pharmaceutical interventions (NPIs) can be reconsidered. Consideration of the potential benefits and harms of implementing NPIs, and ultimately deciding about implementing NPIs, is currently mainly executed by experts and governments. However, general literature on public engagement suggests that integrating public perspectives into decision-making can enhance the quality of decisions and foster greater public understanding of them. In this study, a deliberative mini-public was conducted to integrate this public perspective. The aim was to elicit public considerations regarding non-pharmaceutical interventions by asking a diverse group of citizens to participate as decision-makers and convene, learn and deliberate about implementing non-pharmaceutical interventions during a hypothetical outbreak of a new SARS-CoV-2 variant. Participants emphasized the importance of early implementation during the outbreak, to prevent exceeding healthcare capacity, long-term mental health issues, educational deficits, and bankruptcies. Additionally, participants stressed taking public support into account, and shared ideas on maintaining support. Furthermore, participants wanted to give citizens personal responsibility and freedom in making their own assessment regarding adherence to interventions and how much risk of infection they would be willing to accept. Participants also expressed the need for the government to adopt a learning attitude towards improvements in pandemic response, and to generate more focus on long-term strategies. The deliberative mini-public, revealed public considerations that reflected public values and needs. These considerations might be helpful in better aligning epidemic management policies with public perspectives. Regarding the deliberative mini-public, uncertainties remain about the design and impact on a bigger scale.

Preferences for public engagement in decision-making regarding four COVID-19 non-pharmaceutical interventions in the Netherlands: A survey study.

BACKGROUND: Worldwide, non-pharmaceutical interventions (NPIs) were implemented during the COVID-19 crisis, which heavily impacted the daily lives of citizens. This study considers public perspectives on whether and how public engagement (PE) can contribute to future decision-making about NPIs. METHODS: An online survey was conducted among a representative sample of the public in the Netherlands from 27 October to 9 November 2021. Perceptions and preferences about PE in decision-making on NPIs to control COVID-19 were collected. Preferences regarding four NPIs were studied: Nightly curfew (NC); Digital Covid Certificate (DCC); Closure of elementary schools and daycares (CED); and physical distancing (1.5M). Engagement was surveyed based on the five participation modes of the IAP2 Spectrum of Public Participation, namely inform, consult, advice, collaborate and empower. RESULTS: Of the 4981 respondents, 25% expressed a desire to engage in decision-making, as they thought engagement could improve their understanding and the quality of NPIs, as well as increase their trust in the government. Especially for the NPIs DCC and NC, respondents found it valuable to engage and provide their perspective on trade-offs in values (e.g. opening up society versus division in society by vaccination status). Respondents agreed that the main responsibility in decision-making should stay with experts and policy-makers. 50% of respondents did not want to engage, as they felt no need to engage or considered themselves insufficiently knowledgeable. Inform was deemed the most preferred mode of engagement, and empower the least preferred mode of engagement. CONCLUSION: We reveal large variations in public preferences regarding engagement in NPI decision-making. With 25% of respondents expressing an explicit desire to engage, and considering the benefit of PE in other areas of (public) health, opportunities for PE in NPI decision-making might have been overlooked during the COVID-19 pandemic. Our results provide guidance into when and how to execute PE in future outbreaks.

Public engagement in decision-making regarding the management of the COVID-19 epidemic: Views and expectations of the 'publics'.

BACKGROUND: In the management of epidemics, like COVID-19, trade-offs have to be made between reducing mortality and morbidity and minimizing socioeconomic and political consequences. Traditionally, epidemic management (EM) has been guided and executed attentively by experts and policymakers. It can, however, still be controversial in the public sphere. In the last decades, public engagement (PE) has been successfully applied in various aspects of healthcare. This leads to the question if PE could be implemented in EM decision-making. METHODS: From June to October 2020, seven deliberative discussion focus groups were executed with 35 Dutch citizens between 19 and 84 years old. Their views on PE in COVID-19 management were explored. The deliberative approach allows for the education of participants on the topic before the discussion. The benefits, barriers, timing and possible forms of PE in EM were discussed. RESULTS: Almost all participants supported PE in EM, as they thought that integrating their experiences and ideas would benefit the quality of EM, and increase awareness and acceptance of measures. A fitting mode for PE was consultation, as it was deemed important to provide the public with possibilities to share ideas and feedback; however, final authority remained with experts. The publics could particularly provide input about communication campaigns and control measures. PE could be executed after the first acute phase of the epidemic and during evaluations. CONCLUSIONS: This paper describes the construction of an empirically informed framework about the values and conditions for PE in EM from the perspective of the public. Participants expressed support to engage certain population groups and considered it valuable for the quality and effectiveness of EM; however, they expressed doubts about the feasibility of PE and the capabilities of citizens. In future studies, these results should be confirmed by a broader audience. PATIENT OR PUBLIC CONTRIBUTION: No patients or members of the public were involved in the construction and execution of this study. This study was very exploratory, to gain a first insight into the views of the public in the Netherlands, and will be used to develop engagement practices accordingly. At this stage, the involvement of the public was not yet appropriate.

Art for public engagement on emerging and controversial technologies: A literature review.

Art is increasingly used to engage publics on emerging and controversial technologies, but we still know little about what works in art-based engagement and why. To investigate what art can do for public engagement, we systematically reviewed academic work published from 2000 to 2018 about the effect of art on organized public engagement. We used the dimensions of Responsible Research and Innovation as an analytical framework to identify what outcomes are achieved and what processes contribute to those outcomes. The 30 included studies showed that art mainly supported engagement by (1) reaching wider audiences, (2) fueling individual reflection, and (3) making visible how technologies come into being and interact with the world. With due consideration of the risks of instrumentalization, future research should empirically and reflexively investigate the outcomes and methodologies of art-based engagement, especially concerning collective reflection and change.

Responsible Research and Innovation as a Novel Approach to Guide Educational Impact of Mind, Brain, and Education Research.

We propose a Responsible Research and Innovation (RRI) framework to improve the alignment between mind, brain, and education (MBE) research, the educational practice, and other societal stakeholders. RRI is an approach that has successfully been used in different research fields, but not yet in MBE research. After substantiating the need for, and possibilities of using this framework within MBE research, we report a case study to demonstrate the feasibility and benefits of RRI within an MBE context. This case study entails developing an educational intervention to improve learners' sense of agency regarding their own learning processes using neurofeedback. Using RRI, we found that societal stakeholders (teenagers, parents, and teachers) anticipate different potential impacts of this neurotechnology-based intervention than researchers did, enabling us to adapt the intervention according to these perspectives. This example demonstrates that RRI enables researchers to be reflexive and responsive to the stakeholders needs and values, to ultimately improve the educational and societal value of MBE research.

Constructing future scenarios as a tool to foster responsible research and innovation among future synthetic biologists.

The emerging field of synthetic biology, the (re-)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 (RRI) 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 (iGEM) 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 (and individual) 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.

Frame Reflection Lab: a Playful Method for Frame Reflection on Synthetic Biology.

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 (FRL). 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 (problem analysis and solution finding in reflection on the development of synthetic biology as a field) as well as patterns in second-order reflection (reflection on values and assumptions underlying the first-order reflection). Also patterns in participants' (re)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 (1) a step to precede more application-specific deliberation or decision-making on synthetic biology and as (2) a method for the collection of contemporary citizen viewpoints plus rationales underlying these, for the further (societally) responsible development of the emerging field.

Usefulness of Image Theater Workshops for Exploring Dilemmas in Diabetes Self-Management Among Adolescents.

Diabetes treatment involves a demanding self-management regime that is particularly challenging to adolescents. There is a need for qualitative research into the specific contexts in which adolescents attempt to balance self-management demands with the needs and desires of adolescent life. This study investigates the usefulness of image theater, a participatory form of theater using the body as an expressive tool, to articulate these dilemmas in daily life contexts. We performed a qualitative analysis of two image theater workshops with 12- to 18-year-old adolescents living with diabetes. Our results show three areas of application: (a) unraveling the contextual complexity of lived experience, (b) the articulation of implicit understandings and underlying motives, and (c) the playful exploration of new behavior. We conclude that image theater is a promising method, especially with respect to the opportunities of a more contextual and action-oriented understanding of the trade-offs made in self-management provide for diabetes education and counseling.

Unscripted Responsible Research and Innovation: Adaptive space creation by an emerging RRI practice concerning juvenile justice interventions.

Emerging RRI practices have goals with respect to learning, governance and achieving RRI outcomes (action). However, few practices actually achieve the action phase as actors lack room to manoeuvre, and lack guidance on how to move forward because of the inherent unscriptedness of the emerging RRI practice. In this explorative research an emerging RRI practice is studied to identify factors and barriers to the creation of adaptive space, in which actors can be responsive to the other and adapt, and a narrative can be created in the act of doing. This paper describes how formal and informal ways of organizing emerging RRI practices contribute to adaptive space, and how the metaphorical heuristic of improvisational theatre provides clear action principles to actors involved in emerging RRI practices in action. The RRI practice studied here lies in the domain of juvenile justice, where barriers that restrict room to manoeuvre are abundant. Five factors - 'informality over formality', 'shared action space', 'be flexible', 'keep the action moving' and 'put the relationship central' - were identified to facilitate reflexivity and adaptation in this space.

Dynamics of problem setting and framing in citizen discussions on synthetic biology.

Synthetic biology is an emerging scientific field where engineers and biologists design and build biological systems for various applications. Developing synthetic biology responsibly in the public interest necessitates a meaningful societal dialogue. In this article, we argue that facilitating such a dialogue requires an understanding of how people make sense of synthetic biology. We performed qualitative research to unravel the underlying dynamics of problem setting and framing in citizen discussions on synthetic biology. We found that most people are not inherently for or against synthetic biology as a technology or development in itself, but that their perspectives are framed by core values about our relationships with science and technology and that sensemaking is much dependent on the context and general feelings of (dis)content. Given that there are many assumptions focused on a more binary idea of the public's view, we emphasize the need for frame awareness and understanding in a meaningful dialogue.

Transcranial Electrical Stimulation to Enhance Cognitive Performance of Healthy Minors: A Complex Governance Challenge.

An increasing number of healthy adolescents are consuming products that can enhance their cognitive performance in educational settings. Currently, the use of pharmaceuticals is the most widely discussed enhancement method in the literature, but new evidence suggests that other methods based on Transcranial Electrical Stimulation (tES) also have potential as cognitive enhancer. Just like pharmaceutical enhancers, the availability and education-related use of tES-devices raise a broad range of ethical, legal, and societal issues that need to be addressed by policy-makers. Few studies, however, have specifically explored these issues in relation to child wellbeing. In this narrative review with systematic search, we describe the issues for child wellbeing that could arise from the availability and education-related use of tES-based enhancers by healthy minors. We demonstrate that the issues form a complex web of uncertainties and concerns, which are mainly incited by two factors. First is the high level of factual uncertainty due to gaps in empirical evidence about the exact working mechanisms and efficacy of tES. Moreover, a lack of insight into the technique's (long-term) effects on healthy developing brains, and uncertainties about potential cognitive trade-offs have fueled concerns about the technique's safety and impact. The second factor that contributes to the complexity of issues is the presence of moral diversity in our society. Different opinions exist on whether a certain enhancement effect would be desirable and whether potential risks would be acceptable. These opinions depend on one's moral perspective, and the way one interprets and weights values such as the child's autonomy and authenticity. The challenge for proper governance resides in the design of an appropriate framework that is capable of balancing the different moral perspectives in society, while recognizing the uncertainties that still exist. We therefore argue for a responsible innovation approach, which encourages an adaptive attitude toward emerging knowledge and dynamic societal values, to deal with the identified issues regarding tES-based enhancement appropriately.

A paedophile scan to prevent child sexual abuse in child care? A thought experiment to problematize the notion of alignment in Responsible Research and Innovation.

Responsible Research and Innovation (RRI) is a science policy concept that gained traction from 2000 onwards in the EU and US, in which alignment on purposes and values between different stakeholders is a key aspect. This thought experiment problematizes this particular notion: ethically acceptable and societally desirable outcomes are not necessarily achieved when alignment is a consequence of early closure. To argue this point, we took the example of the potential development of scanning technology for the detection of paedophilia among job applicants, for which indicators of broad societal support were found in an RRI project on neuroimaging. We analysed this case by looking through several lenses, obtained by structured and non-structured literature searches. We explored how facts and values are masked when a taboo topic is considered. This results in the black boxing of the problem definition, potential solutions and development trajectories. Complex unstructured problems can thus be perceived as manageable structured problems, which can in turn lead to irresponsible policies surrounding technology development. Responsible processes of research and technology development thus require the involvement of a critical reflector who is alert to signs of early closure and who prevents foreclosure of ongoing reflexive deliberation. There is an important role for ethical, legal and societal aspect studies within the framework of RRI. This paper shows that the concepts of "value/fact diversity masking" and "early discursive closure" are new avenues for RRI research.

Supporting Citizens in Reflection on Synthetic Biology by Means of Video-Narratives.

To unravel how video-narratives can support reflection in Responsible Research and Innovation contexts, this study evaluates four video-narratives designed for citizen-reflection on synthetic biology. Each video narrative comprised separate clips about three subtopics in which actors represented different views of synthetic biology. The video-clips were presented to Dutch citizens in two different setups: per narrator and per subtopic. Both setups appeared to trigger three reflection processes and three reflection outcomes. Our findings suggest that video-narratives shown per subtopic support reflection more extensively, provided that workshop setups pay considerable attention to reflection on values and assumptions.

Responsible Reporting: Neuroimaging News in the Age of Responsible Research and Innovation.

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.

Stimulating client involvement and client-provider dialog through participatory video: deliberations on long-term care in a psychiatric hospital.

OBJECTIVE: Recent trends in health care indicate a shift toward client-centered care and an emphasis on dialog between clients and providers. The aim of this study is to assess the role of video-mediated moral deliberation in stimulating dialog between clients and providers. METHODS: A participatory video project carried out in a long-term care facility of a psychiatric hospital was investigated as a case study. Data were collected through interviews, a focus group and a dialog session with providers, clients, managers and a family member. RESULTS: Data analysis produced four themes: (1) the video elicits discussion by affecting viewers; (2) the video raises awareness and discussion of clients' needs and desires; (3) the video and discussion give a voice to clients; and (4) the video and discussions draw attention to client-provider relations. CONCLUSION: The study shows that video-mediated moral deliberation can be a useful tool for starting dialog between clients and care providers. It can also contribute to changes in care provision by acting as a catalyst. PRACTICE IMPLICATIONS: This study provides an example of how video-mediated moral deliberation can be applied in the context of psychiatric care. Opportunities regarding the usefulness of video-mediated moral deliberation include training purposes and education.

Inguinal hernia: obligatory indication for elective surgery? A prospective assessment of quality of life before and after plug and patch inguinal hernia repair.

BACKGROUND: Incarcerated inguinal hernia may be treated effectively by recent surgical techniques with a low rate of complications, but it is unclear whether quality of life is improved by elective inguinal hernia repair. Therefore we investigated the quality of life before and after inguinal hernia repair using plug and patch technique. PATIENTS AND METHODS: Quality of life was prospectively assessed in 123 patients before and 3 months after plug and patch inguinal hernia repair using the Short Form 36 questionaire and a visual analog scale. All patients complained preoperatively of pain associated with the clinical findings of inguinal hernia (visual analog scale: reduced quality of life 6.8+/-2.7; reduced daily activity: 5.5+/-2.6). Clinical characteristics (operation times, in-hospital stay, complications, need for pain medication) were documented. Inclusion criteria were patients with symptomatic inguinal hernia, scheduled for elective unilateral inguinal hernia repair by plug and patch technique. RESULTS: There were no major in-hospital complications. At 3 months no recurrences of inguinal hernia or late onset complications were observed; seven patients complained of dumbness, and eight felt pressure at the operation site with a tendency for resolving pain within this time. At 3 months patients had a significantly improved quality of life regarding freedom from pain, vitality, and physical activity compared to preoperatively. CONCLUSIONS: Plug and patch repair of unilateral inguinal hernia improves quality of life with a very low rate of procedural complications. Regarding freedom from pain, vitality, and physical activity there is significant improvement as compared to preoperatively. Therefore inguinal hernia repair should be intended in all elective cases and plug and patch repair appears as an excellent technique to improve quality of life.