Analytical categories to describe deficit attributions in deep disagreements between citizens and experts.

Disagreements often arise from citizen-expert collaboration, as both agents share a different epistemic worldview. Fogelin, following Wittgenstein, proposed that some disagreements (i.e. deep disagreements) cannot be rationally solved when participants share different forms of life. Citizen-expert is an exemplar of this sort of disagreement. Moreover, deep disagreements are often followed by deficit attributions from one of the agents to the other, regarding their epistemic understanding, credibility, and motives. Articulating the notions of deep disagreements and deficit attributions, as well as reviewing the complementary concept of epistemic injustice, we have constructed analytical categories that allow us to understand two things: (1) how deficit attributions operate in dialogical contexts of deep disagreements and (2) what types of deficit attributions we can find. We expect that this characterization can serve to analyze citizen-expert dialogues and the pursuit of more modest and inclusive forms of conversation.

Public engagement in health technology assessment in Brazil: the case of the public consultation on National Clinical Guidelines for Care in Normal Birth.

BACKGROUND: There is a growing body of literature that recognizes the importance of public engagement in health technology assessment. However, there is still uncertainty regarding how the results should be recorded, analyzed, and used by decision makers. OBJECTIVE: Synthesize the contributions of the Brazilian public (women, health professionals, managers, educational institutions, and companies) about the implementation of the National Clinical Guidelines for Care in Normal Birth from the public consultation carried out in Brazil. METHOD: IRaMuTeQ software was used to organize and summarize the corpus based on three types of analysis: descriptive statistics; descending hierarchical classification; and specificities analysis. The public consultation was conducted in 2016 by the National Committee for Health Technology Incorporation (CONITEC) in the Brazilian public health system as part of the guideline development process. RESULTS: The corpus consisted of 303 texts, separated into 1233 text segments, 1081 of which were used, corresponding to retention of 87.67%. Five classes emerged from our analyses: mandatory presence of an obstetrician during labor and delivery in hospital settings; barriers and facilitators for guideline implementation; use of evidence-based practices by health professionals; progression of labor and delivery and women's rights; and mobilization to promote the guideline For each class, the most frequent words and sentences with the highest chi-squared scores were presented. Barriers were associated with lack of financial resources, training and professional motivation, and facilitators with training to change the practices of health professionals. Obstetric nurses emerged as an alternative for supervising normal births as well as the mandatory presence of an obstetrician during childbirth in hospital settings. CONCLUSION: Our findings summarize the contributions provided by the Brazilian public and shed some light on the barriers and facilitators of clinical guidelines for care in normal birth. These topics are not typically explored by quantitative studies. Including this information in the decision-making process would not only increase public engagement, but provide greater evidence for implementing the clinical guidelines nationwide.

Why the views of Latin American Scientists on Citizen Science as a Tool for Pollinator Monitoring and Conservation Matter?

Pollinators are threatened all over the planet; scientific data about the status of them is essential for planning conservation and impact mitigation. Appropriate methods and costs for monitoring are being discussed and non-scientist participation in data collection in citizen science (CS) projects is a very promising option. However, there is criticism regarding the quality of data gathered by non-scientists and their real contribution to scientific research, which makes the engagement of scientists in these projects crucial for data verification and validation and training volunteers. CS is still poorly spread in Latin America, so in order to propose strategies to engage scientists, it is necessary to understand the attitude of these professionals towards CS and their interests in engaging in it. To this end, we conducted a survey with 96 biodiversity scientists based in five Latin American countries. In general, the respondents have a very favorable attitude towards CS, although only a small percentage of them are engaged in CS projects. Obtaining data for scientific research is the scientists' main interest in CS, although some of them have also expressed more altruistic reasons for engaging in CS related to ethical and social values. Our paper also suggests five interrelated strategies that can be taken to engage scientists in CS, covering the following: (a) create funding lines to support projects, (b) include extension and outreach activities in the system of scientists' evaluation, (c) promote an inter and transdisciplinary infrastructure, (d) promote scientists' building capacities in CS, and (e) encourage scientists to do science communication.

Engagement and social acceptance in genome editing for human benefit: Reflections on research and practice in a global context.

While there are both practical and ethical reasons for public engagement in science and innovation, real-world detailed examples of engagement practice and the lessons to come from these are still hard to find. This paper showcases three contextually diverse case studies of engagement practice. Case 1 recounts the experiences of a government-funded initiative to involve scientists and policy makers as science communicators for the purpose of engaging the Argentine public on gene editing. Case 2 describes the research methodologies used to elicit diverse stakeholder views in the face of political uncertainty and institutional distrust in India. Finally, case 3 unpacks the tensions and gaps with existing international guidelines for ensuring local voices are respected in community decision-making in Burkina Faso. Each case shares its own compelling rationale for selecting the engagement method chosen and details the challenges encountered along the way. Each case shares its vision for creating legitimate opportunities for broader societal involvement in the planning, conduct and delivery of responsible science. These cases demonstrate the nuances, sensitivities and challenges of engaging with publics and broader stakeholders in discussions about genome editing for human benefit.

Public Involvement & Engagement in health inequalities research on COVID-19 pandemic: a case study of CIDACS/FIOCRUZ BAHIA.

Introduction: Health inequalities in Brazil have deepened on Covid-19 pandemic, and the most vulnerable people were the more affected. A multidisciplinary team from Cidacs/Fiocruz Bahia developed a Social Disparities Index for Covid-19 (IDS-COVID-19) to support the evaluation of effects of health inequalities on the pandemic in Brazil. Public Involvement and Engagement were the pillars of this research because they allowed us to access first hand experiences about the social context in our country. Objectives: This paper aims to describe our Public Involvement and Engagement experience by analysing our challenges, strategies, activities, results, and lessons learned during the construction of IDS-COVID-19. Methods: The basis of the IDS-Covid-19 public engagement model was the participation of different social groups through methods and techniques that allow dialogue. Several activities and communication products supported the continuous interactions. Another guideline was the inclusion and the welcoming of participants from the beginning of the project to ensure that the participant's contributions could drive decision-making about the research. Results: Participants made several contributions to the research as a new layer of information to the Index, and improvements were made to the interactive panel. They also compromised to support the dissemination and use of the product. Eight representatives of community groups and 29 policymakers participated in our engagement activities during the project. More than 500 people were in our open webinars. In addition, more than 140 news items about IDS-Covid-19 were published in national and international media. Conclusions: We highlight as lessons learned the adaptation of some dissemination formats to the public, and the necessity of being flexible and accessible to participants. We strengthened the relationship with relevant stakeholders by exploring individual conversations by phone, WhatsApp, email, and interviews to produce a documentary that registered this whole experience. Cidacs/Fiocruz Bahia has also embedded public engagement and involvement in the study agenda.

Public engagement in health technology assessment in Brazil: the case of the Trastuzumab public consultation.

BACKGROUND: Public engagement in health technology assessment (HTA) is increasing worldwide. There are several forms of public engagement and it is not always possible to determine which stakeholders participate in the HTA process and how they contribute. Our objective was to investigate which types of social representatives contributed to the public consultation on the incorporation of Trastuzumab for early-stage breast cancer treatment within the public health system in Brazil, held in 2012 by the National Committee for Health Technology Incorporation (CONITEC). METHODS: A mixed methods approach was used to analyze social representativeness and the composition of the corpus from the public consultation, which consisted of 127 contributions. Three types of analysis were performed using IRaMuTeQ software: classic lexical analysis, descending hierarchical classification and specificities analysis. The contributions were clustered according to the main categories of discourse observed, into four social representation categories: 1) patient representation/advocacy; 2) pharmaceutical industry/advocacy; 3) healthcare professionals; and 4) individual contributions. RESULTS: Category 1 contained words related to increased survival due to use of the drug and a low score for words pertaining to studies on Trastuzumab. The word "safety" obtained a positive score only in category 2, which was also the only category that exhibited a negative score for the word "risk". Category 3 displayed the lowest scores for "diagnosis" and "safety". The word "efficacy" had a negative score only in category 4. CONCLUSIONS: Each category exhibited different results for words related to health systems and to key concepts linked to HTA. Our analysis enabled the identification of the most prominent contributions for each category. Despite the promising results obtained, further research is needed to validate this software for use in analyzing public contributions.

Apoio a projetos de divulgação científica: análise de edital realizado pela Fundação Oswaldo Cruz / Financial support for science communication projects: analysis of the call carried out by the Oswaldo Cruz Foundation / Apoyo a proyectos de divulgación de la ciencia: análisis de convocatoria realizada por la Fundación Oswaldo Cruz

Este artigo objetiva analisar, por meio de métodos quantitativos e qualitativos e análise de conteúdo, as 145 propostas submetidas ao edital de apoio a projetos de divulgação científica, realizado pela Fundação Oswaldo Cruz, em 2018, visando compreender a demanda existente e dar subsídios para a elaboração de uma política institucional. Foram definidas categorias de análise, tendo em vista a identificação e caracterização do perfil dos proponentes e projetos. Os resultados indicam que, embora haja concentração de projetos na região Sudeste, profissionais de nove estados brasileiros participaram da convocatória, sendo 63% das propostas submetidas por mulheres. Apenas 40% dos projetos previam ação/estratégia de avaliação e somente 7% mencionaram ações de acessibilidade, tema prioritário na Fiocruz. Destacamos, por fim, a necessidade de oferecer frequentemente editais desse tipo, associados ao desenvolvimento de programas e capacitação da comunidade da Fiocruz para estabelecer o diálogo com a sociedade, de forma diversificada, abrangente, acessível e inclusiva.

This paper aims to analyze, through quantitative and qualitative methods and content analysis, the 145 proposals submitted to the call for supporting science communication projects, carried out by the Oswaldo Cruz Foundation, in 2018, intending to provide a better understanding of the existing demand and to contribute to the elaboration of an institutional policy. Categories to be analyzed in order to map the profile and characteristics of the proposals and proponents were defined. The results indicate that, although there is a concentration of projects in the Southeast region, professionals from nine Brazilian states participated in the call, being 63% of them women. Only 40% of the projects proposed evaluation actions and only 7% mentioned accessibility strategies, a priority issue at Fiocruz. Finally, we emphasize the need of frequently offering this kind of calls, associated with the training of scientists and of the Fiocruz community to establish dialogue with society in a diversified, comprehensive, accessible and inclusive way.

Este artículo objetiva analizar, por medio de métodos cuantitativos y cualitativos y análisis de contenido, los 145 proyectos sometidos a la convocatoria para apoyo a proyectos de divulgación científica, realizado por la Fundación Oswaldo Cruz, en 2018, buscando proveer subsidios para comprender la demanda existente y contribuir a la elaboración de una política institucional. Se definieron categorías de análisis, teniendo en cuenta la identificación y caracterización del perfil de los proponentes y proyectos. Los resultados indican que, aunque hay concentración de proyectos en la región sudeste, profesionales de nueve estados brasileños participaron de la convocatoria, siendo el 63% de las propuestas sometidas por mujeres. Sólo el 40% de los proyectos preveía acción/estrategia de evaluación y sólo el 7% mencionó acciones de accesibilidad, tema prioritario en la Fiocruz. Por último, destacamos la necesidad de ofrecer a menudo convocatorias de este tipo, asociada al desarrollo de programas y acciones de capacitación de los científicos y de la comunidad de Fiocruz para establecer el diálogo con la sociedad, de forma diversa, completa, accesible e inclusiva.

Posicionamentos de alunos do ensino médio sobre a Ciência em Animais de Laboratório / Positioning of high school students on Laboratory Animals Science

Opinion studies report different points of view regarding the use of animals in research. In Brazil, few studies are dedicated to know the position of society in relation to animal experimentation. This article allowed to access and systematize the positions of high school students on the subject. For this, three discussion groups (GD) were conducted using a game tool with content focused on the Brazilian reality and covering different experiences and points of view related to laboratory animal science (LAS). The opinion of the young people was verified at the beginning and the end of the activity and the discussions throughout the game were recorded (audio and image) for content analysis. A total of 47 segments of attitudes about animal experimentation were transcribed, of which 29 were agreement (61.70%), 16 were ejection (34%) and only 2 speech segments showed an indefinite attitude (4.3%). There was a diversity of young peoples opinions about the initial positions suggested by the game. At the end of the dynamics, the positions chosen as the most representative ones involved: the importance of providing well-being to the laboratory animals; the need for monitoring and follow-up of these surveys by public agencies; investment in awareness-raising processes. The activity carried out allowed us to reflect on the theme, leading the participants to perceive the complexity of the subject. Based on this research, it will be possible to plan and carry out continuous activities for the dissemination of LAS, the development and strengthening of the area to the society and the scientific community itself.(AU)

Estudos de opinião relatam pontos de vistas distintos em relação ao uso de animais em pesquisas. No Brasil, poucos estudos dedicam-se a conhecer o posicionamento da sociedade em relação à experimentação animal. Esse artigo permitiu acessar e sistematizar os posicionamentos de jovens do Ensino Médio sobre o tema. Para isso, foram realizados três grupos de discussão (GD) utilizando uma ferramenta de jogo com conteúdo voltado à realidade brasileira e abrangendo diferentes vivências e pontos de vista relacionados à ciência em animais de laboratório (CAL). Foi verificada a opinião dos jovens no início e fim da atividade e as discussões ao longo do jogo foram filmadas e gravadas para realização de análise de conteúdo. Foram transcritos 47 segmentos de falas referentes às atitudes em relação à experimentação animal, dos quais 29 foram de apoio (61,70 %), 16 de rejeição (34 %) e apenas 2 segmentos de fala revelaram uma atitude indefinida (4,3 %). Verificou-se uma diversidade de opiniões dos jovens sobre os posicionamentos iniciais sugeridos pelo jogo. Ao final da dinâmica, os posicionamentos eleitos como os mais representativos envolveram: a importância de proporcionar bem-estar aos animais de laboratório; a necessidade de que haja fiscalização e acompanhamento dessas pesquisas pelos órgãos públicos; o investimento em processos de conscientização. A atividade realizada permitiu a reflexão sobre o tema levando os participantes a perceber a complexidade do assunto. A partir dessa pesquisa será possível planejar e desenvolver atividades continuadas de divulgação da CAL, o desenvolvimento e o fortalecimento da área perante a sociedade e a própria comunidade científica.(AU)

Posicionamentos de alunos do ensino médio sobre a Ciência em Animais de Laboratório / Positioning of high school students on Laboratory Animals Science

Opinion studies report different points of view regarding the use of animals in research. In Brazil, few studies are dedicated to know the position of society in relation to animal experimentation. This article allowed to access and systematize the positions of high school students on the subject. For this, three discussion groups (GD) were conducted using a game tool with content focused on the Brazilian reality and covering different experiences and points of view related to laboratory animal science (LAS). The opinion of the young people was verified at the beginning and the end of the activity and the discussions throughout the game were recorded (audio and image) for content analysis. A total of 47 segments of attitudes about animal experimentation were transcribed, of which 29 were agreement (61.70%), 16 were ejection (34%) and only 2 speech segments showed an indefinite attitude (4.3%). There was a diversity of young people’s opinions about the initial positions suggested by the game. At the end of the dynamics, the positions chosen as the most representative ones involved: the importance of providing well-being to the laboratory animals; the need for monitoring and follow-up of these surveys by public agencies; investment in awareness-raising processes. The activity carried out allowed us to reflect on the theme, leading the participants to perceive the complexity of the subject. Based on this research, it will be possible to plan and carry out continuous activities for the dissemination of LAS, the development and strengthening of the area to the society and the scientific community itself.

Estudos de opinião relatam pontos de vistas distintos em relação ao uso de animais em pesquisas. No Brasil, poucos estudos dedicam-se a conhecer o posicionamento da sociedade em relação à experimentação animal. Esse artigo permitiu acessar e sistematizar os posicionamentos de jovens do Ensino Médio sobre o tema. Para isso, foram realizados três grupos de discussão (GD) utilizando uma ferramenta de jogo com conteúdo voltado à realidade brasileira e abrangendo diferentes vivências e pontos de vista relacionados à ciência em animais de laboratório (CAL). Foi verificada a opinião dos jovens no início e fim da atividade e as discussões ao longo do jogo foram filmadas e gravadas para realização de análise de conteúdo. Foram transcritos 47 segmentos de falas referentes às atitudes em relação à experimentação animal, dos quais 29 foram de apoio (61,70 %), 16 de rejeição (34 %) e apenas 2 segmentos de fala revelaram uma atitude indefinida (4,3 %). Verificou-se uma diversidade de opiniões dos jovens sobre os posicionamentos iniciais sugeridos pelo jogo. Ao final da dinâmica, os posicionamentos eleitos como os mais representativos envolveram: a importância de proporcionar bem-estar aos animais de laboratório; a necessidade de que haja fiscalização e acompanhamento dessas pesquisas pelos órgãos públicos; o investimento em processos de conscientização. A atividade realizada permitiu a reflexão sobre o tema levando os participantes a perceber a complexidade do assunto. A partir dessa pesquisa será possível planejar e desenvolver atividades continuadas de divulgação da CAL, o desenvolvimento e o fortalecimento da área perante a sociedade e a própria comunidade científica.

Os fatores determinantes da participação na produção coletiva de ideias para solução de problemas públicos / Los factores determinantes de la participación en la producción colectiva de ideas para solución de problemas públicos / Determinant factors of participation in the co-production of ideas to solve public problems

Resumo Quais os fatores determinantes da participação dos cidadãos na produção coletiva de ideias para solução de problemas públicos? Para responder essa questão, 510 cidadãos, inscritos na plataforma de produção coletiva de ideias Prêmio Ideia, responderam a um questionário apontando o quanto os construtos extraídos da literatura como determinantes da participação em plataformas online seriam decisivos para seu interesse em participar. A análise de equações estruturais aponta que o retorno dado pela instituição pública aos cidadãos e a comodidade determinam o interesse em participar, mas que esse interesse não implica, necessariamente, a participação efetiva. Conclui-se que a aplicação das ideias geradas e o feedback aos participantes são determinantes para a participação social e sugerem-se pesquisas que abordem também as motivações das instituições proponentes em propor tais iniciativas.

Resumen ¿Cuáles son los factores determinantes de la participación de los ciudadanos in la producción colectiva de ideas para la solución de problemas públicos? Para responder a la pregunta, 510 ciudadanos, inscritos en la plataforma de producción colectiva de ideas Premio Ideia, respondiendo a un cuestionario apuntando cuánto son constructos extraídos de la literatura como determinantes de la participación en plataformas en línea, serían decisivas para su interés en participar. El análisis de ecuaciones estructurales apunta que el retorno de una institución pública a los ciudadanos y una comodidad son factores que determinan el interés en participar, pero que ese interés no implica necesariamente en la participación efectiva. Se concluye que la aplicación de las ideas generadas y el feedback a los participantes son determinantes para la participación social y se sugieren investigaciones que aborden también las motivaciones de las empresas proponentes en proponer tales iniciativas.

Abstract What are the determinant factors of citizens' participation in the collective production of ideas to solve public problems? In order to answer this question, 510 citizens, enrolled in Prêmio Ideia, a platform of collective production of ideas, responded to a questionnaire pointing out determinant factors identified in literature about participation in online platforms that are decisive for their own interest in participating. The structural equation analysis highlights that the feedback given by a public institution to citizens and convenience are determinant factors for participation. This interest in participation, however, does not necessarily imply effective participation. It is concluded that the application of the ideas created through the platform and the feedback to the participants are determinants for social participation and the study suggests further research approaching the motivation of companies that propose such initiatives.

Governança na nova genética e a participação pública: o caso das pesquisas com células-tronco / Governance in new genetics and public participation: the case of stem cell research

O artigo visa a apresentar uma revisão crítica da literatura internacional contemporânea sobre novas formas de governança e da participação pública, focando nas biociências da saúde de ponta, na área da saúde coletiva e pública. A nova genética confronta os indivíduos, as comunidades e os Estados nacionais com uma reformulação de supostos previamente aceitos, sobre a natureza da vida e das relações entre os seres vivos. Esses desenvolvimentos, nos países industrializados, têm rearticulado as relações entre cidadãos, cientistas e agentes de políticas públicas, e levado a adotar estratégias que envolvem simultaneamente o público em geral e excluem algumas das suas contribuições para o desenho de sistemas de regulação. O objetivo do artigo é apresentar elementos conceituais sobre esses temas que permitam, por um lado, refletir sobre a evolução das teorias e, por outro, difundir algumas das suas contribuições relevantes para a participação pública no contexto brasileiro. Exemplifica-se com o caso das pesquisas com células-tronco (PCTs) e das terapias celulares, segundo informações de uma pesquisa em andamento coordenada pela autora desse artigo. No final, o artigo analisa os tipos de consultas públicas elaboradas sobre a PCT nacional e a inclusão limitada das organizações da sociedade civil brasileira.

This paper presents a critical review of contemporary international literature on new forms of governance and public engagement, and focuses on cutting-edge health biosciences in the fields of social and public health. New genetics confronts individuals, communities and national States with a redefinition of conventional assumptions on the nature of life and of relationships between living beings. In industrialized countries, these developments have contributed to reorganize relationships between citizens, scientists and policymakers, and have led to the design of public policy strategies that, simultaneously, promote the engagement of the general public and exclude some of their contributions from regulatory frameworks. The main aim of this paper is to discuss selected theoretical concepts on these topics, as an incentive, on the one hand, for a reflection on the evolution of theories and, on the other, for the dissemination of contributions eventually relevant to public participation in the Brazilian context. Examples are provided on the case of stem cell research and therapy (SCR), based on data from an ongoing research project coordinated by the author. Towards the end, the text analyzes the public consultation processes on stem cell research developed in Brazil and their limited inclusion of voices from civil society organizations.