In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that outcomes are tailored (...) to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. (shrink)

YOUNG L, and WHARF HIGGINS J.Nursing Inquiry2010;17: 346–358 Using participatory research to challenge the status quo for women’s cardiovascular healthCardiovascular health research has been dominated by medical and patriarchal paradigms, minimizing a broader perspective of causes of disease. Socioeconomic status as a risk for cardiovascular disease is well established by research, yet these findings have had little influence. Participatory research (PR) that frames mixed method research has potential to bring contextualized clinically relevant findings into program planning and policy‐making arenas toward (...) developing meaningful health and social policies relevant to primary prevention. In this article we provide an overview of a PR program that included two quantitative and one qualitative studies and then we discuss lessons learned. The PR process we found was empowering for lone mothers, and transformative for lone mothers and researchers. Further, PR as an approach to research opened spaces in practice and policy‐making arenas to raise upstream issues relevant to the health of low income lone mothers. We conclude that while PR is an effective approach to social determinants research, as a time‐intensive endeavor, and one that does not easily align with research tradition, researchers must consider the strengths and drawbacks of PR when planning to implement such an approach. (shrink)

The enactive approach to cognition distinctively emphasizes autonomy, adaptivity, agency, meaning, experience, and interaction. Taken together, these principles can provide the new sciences of language with a comprehensive philosophical framework: languaging as adaptive social sense-making. This is a refinement and advancement on Maturana’s idea of languaging as a manner of living. Overcoming limitations in Maturana’s initial formulation of languaging is one of three motivations for this paper. Another is to give a response to skeptics who challenge enactivism to connect “lower-level” (...) sense-making with “higher-order” sophisticated moves like those commonly ascribed to language. Our primary goal is to contribute a positive story developed from the enactive account of social cognition, participatory sense-making. This concept is put into play in two different philosophical models, which respectively chronicle the logical and ontogenetic development of languaging as a particular form of social agency. Languaging emerges from the interplay of coordination and exploration inherent in the primordial tensions of participatory sense-making between individual and interactive norms; it is a practice that transcends the self-other boundary and enables agents to regulate self and other as well as interaction couplings. Linguistic sense-makers are those who negotiate interactive and internalized ways of meta-regulating the moment-to-moment activities of living and cognizing. Sense-makers in enlanguaged environments incorporate sensitivities, roles, and powers into their unique yet intelligible linguistic bodies. We dissolve the problematic dichotomies of high/low, online/offline, and linguistic/nonlinguistic cognition, and we provide new boundary criteria for specifying languaging as a prevalent kind of human social sense-making. (shrink)

As yet, there is no enactive account of social cognition. This paper extends the enactive concept of sense-making into the social domain. It takes as its departure point the process of interaction between individuals in a social encounter. It is a well-established finding that individuals can and generally do coordinate their movements and utterances in such situations. We argue that the interaction process can take on a form of autonomy. This allows us to reframe the problem of social cognition as (...) that of how meaning is generated and transformed in the interplay between the unfolding interaction process and the individuals engaged in it. The notion of sense-making in this realm becomes participatory sense-making. The onus of social understanding thus moves away from strictly the individual only. (shrink)

Although it is the most widely accepted form of organic guarantee, third party certification can be inaccessible for small-scale producers and promotes a highly market-oriented vision of organics. By contrast, participatory guarantee systems are based on principles of relationship-building, mutual learning, trust, context-specificity, local control, diversity, and collective action. This paper uses the case study of the Mexican Network of Local Organic Markets to explore how PGS can be used to support a more alternative vision of organics, grounded in the (...) notion of food sovereignty. It presents some of the key challenges and opportunities associated with the approach, and highlights its potential to serve as a locally-based institution for collective action, thereby offering some structural support to alternative agri-food initiatives. (shrink)

Over the past two decades the growth of the organic sector has been accompanied by a shift away from first party, or peer review, systems of certification and towards third party certification, in which a disinterested party is responsible for the development of organic standards and the verification of producer compliance. This paper explores some of the limitations of the third party certification model and presents the case of Mexico as an example of how an alternative form of participatory certification (...) has emerged. The paper suggests that participatory guarantee systems (PGS) are reflective of the growing “beyond organic” movement, which focuses on reconstructing the local and re-embedding food systems into their socio-ecological contexts. It argues that PGS offers a number of benefits for producers and consumers, particularly in the South, but that it faces a number of challenges as well, such as a lack of formal recognition, social conflicts and dependence on donated resources. (shrink)

Scientific and technological policy issues are not and should not be exempt from the norms of democratic governance. This article examines two major theories of democracy, analyzes their commonalities and differences, and derives criteria for evaluating various forms of public participation in policymaking. The author argues for a new category of participation, participatory analysis, that includes forms of participation that satisfy democratic criteria and emphasizes the importance of learning among participants. Different types of participatory analysis may be best suited to (...) different kinds of policy problems. (shrink)

This paper serves a dual function: (1) it is intended to proffer a stable understanding of our digital engagement on the Internet as a form of labor that is co-opted by digital firms for private profit; (2) it extends the concept of participatory democracy to our digital world, arguing that our collective or common production of value for digital firms (in the form of what I call“knowledge goods”) requires the implementation of participatory democratic governance mechanisms over these digital firms and (...) the experimentation with democratic digital alternatives.Whereas others have argued in favor of democratic control over digital platforms on the basis of the power that digital firms have over user's lives (Engelmann et al.,2020), this paper adds to this discussion by arguing in favor of digital platform democratization based on the value-generating labor contributed by digital users. (shrink)

Recent science and technology studies have analyzed questions of nonexpert participation in science, technology, and science policy from an empirically grounded perspective. The introduction to this special issue offers a double contribution to this debate. First, it presents a summary of the state of the art and an outline of the historical emergence of the participatory question. The argument distinguishes four periods since the late nineteenth century, each with a specific relationship between expert and nonexpert knowledge ranging from a hybrid, (...) to a politicized, to an autonomous, to a participatory relationship. Second, the introduction summarizes the contributions to this issue. Their common concern is to take the debate one step further by critically reflecting the problems and limitations of participatory practices. The contributions point out the need for contextualizing the participatory question within the wider social, economic, and political circumstances in which participatory science and technology is set. (shrink)

Given the recent call to strengthen collaboration between researchers and relevant practitioners, we consider participatory design as a way to advance Cognitive Science. Building on examples from the Learning Sciences and Human−Computer Interaction, we (a) explore what, why, who, when, and where researchers can collaborate with community members in Cognitive Science research; (b) examine the ways in which participatory‐design research can benefit the field; and (c) share ideas to incorporate participatory design into existing basic and applied research programs. Through this (...) article, we hope to spark deeper discussions on how cognitive scientists can collaborate with community members to benefit both research and practice. (shrink)

This book articulates a participatory conception of deliberative democracy that takes the democratic ideal of self-government seriously. It aims to improve citizens' democratic control and vindicate the value of citizens' participation against conceptions that threaten to undermine it. The book critically analyzes deep pluralist, epistocratic, and lottocratic conceptions of democracy. Their defenders propose various institutional ''shortcuts'' to help solve problems of democratic governance such as overcoming disagreements, citizens' political ignorance, or poor-quality deliberation. However, all these shortcut proposals require citizens to (...) blindly defer to actors over whose decisions they cannot exercise control. Implementing such proposals would therefore undermine democracy. Moreover, it seems naive to assume that a community can reach better outcomes 'faster' if it bypasses the beliefs and attitudes of its citizens. Unfortunately, there are no 'shortcuts' to make a community better than its members. The only road to better outcomes is the long, participatory road that is taken when citizens forge a collective will by changing one another's hearts and minds. However difficult the process of justifying political decisions to one another may be, skipping it cannot get us any closer to the democratic ideal. Starting from this conviction, the book defends a conception of democracy ''without shortcuts''. This conception sheds new light on long-standing debates about the proper scope of public reason, the role of religion in politics, and the democratic legitimacy of judicial review. It also proposes new ways to unleash the democratic potential of institutional innovations such as deliberative minipublics. (shrink)

This paper presents a preliminary analysis of the first participatory budgeting experiment in the United States, in Chicago's 49th Ward. There are two avenues of inquiry: First, does participatory budgeting result in different budgetary priorities than standard practices? Second, do projects meet normative social justice outcomes? It is clear that allowing citizens to determine municipal budget projects results in very different outcomes than standard procedures. Importantly, citizens in the 49th Ward consistently choose projects that the research literature classifies as low (...) priority. The results are mixed, however, when it comes to social justice outcomes. While there is no clear pattern in which projects are located only in affluent sections of the ward, there is evidence of geographic clustering. Select areas are awarded projects like community gardens, dog parks, and playgrounds, while others are limited to street resurfacing, sidewalk repairs, bike racks, and bike lanes. Based on our findings, we offer suggestions for future programmatic changes. (shrink)

This paper examines the participatory trend in cultural memory practices, focusing on the participatory artistic memory of communism in Romania and Bulgaria from a comparative perspective. On the one hand, these participatory artistic memory projects examine the ways in which ordinary people and contemporary artists share their memories of the communist past outside of the officially sanctioned interpretations, aiming to foster their own version of “monument” that does not necessarily follow the ossifying politics of monuments. On the other hand, a (...) participatory memory culture does not always necessarily reflect the unequal cultural capital of the participating social actors and the dissimilar political commitments. This mnemonic practice ought not to be exclusively associated with the struggle between the narratives of the elites and the cultural expressions of those marginalized. Participatory memory practices might also facilitate cordial encounters among persons with dissimilar political commitments and unequal cultural capital. (shrink)

Focusing democratic theory on the pressing issue of punishment, Punishment, Participatory Democracy, and the Jury argues for participatory institutional designs as antidotes to the American penal state. Citizen action in institutions like the jury and restorative justice programs can foster the attunement, reflectiveness, and full-bodied communication needed as foundations for widespread civic responsibility for criminal justice.

BackgroundExisting clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care. MethodWe used a participatory development design. We worked together with stakeholders in a Community of Practice throughout the (...) study. Potential end users (nurses and nurse assistants in palliative care) used CURA in several pilots and provided us with feedback which we used to improve CURA.ResultsWe distinguished three phases in the development process. Phase one, Identifying Needs, focused on identifying stakeholder and end user needs and preferences, learning from existing CES instruments, their development and evaluation, and identify gaps. Phase two, Development, focused on designing, developing, refining and tailoring the instrument on the basis of iterative co-creation. Phase three, Dissemination, focused on implementation and dissemination. The instrument, CURA, is a four-step low-threshold instrument that fosters ethical reflection.ConclusionsParticipatory development is a valuable approach for developing clinical ethics support instruments. Collaborating with end users and other stakeholders in our development study has helped to meet the needs and preferences of end users, to come up with strategies to refine the instrument in order to enhance its feasibility, and to overcome reported limitations of existing clinical ethics instruments. (shrink)

Participatory Democracy and the Criminal Law examines how the principles of participatory democracy are instantiated within the criminal justice system and explores how these principles could be further developed and expanded within this context. This collection of essays focuses on multiple participatory structures within the criminal law, with the criminal jury serving as a paradigmatic example, alongside community-based sentencing initiatives and restorative justice practices, to name but a few. With a focus on both the theoretical underpinnings and practical applications of (...) participatory political structures, this book will cover a range of topics such as the historical evolution of jury trials, the significance of community representation in sentencing, participatory structures in law enforcement, and models of community-based restorative justice. This work will illuminate the ways in which participatory mechanisms not only administer justice but also reinforce the civic identity of individuals within a democratic society. (shrink)

Given the sensitive nature of trauma-focused research, it is important that researchers understand the impact of research participation on study participants. The current study examined the relationship between type of child abuse, psychological adjustment, and self-reported participatory distress in 105 female adult survivors of childhood abuse. Several key findings emerged: (a) overall, participants reported low levels of participatory distress; (b) greater levels of participatory distress were reported by sexual abuse survivors and were associated with higher scores on depressed mood and (...) posttraumatic stress; and (c) posttraumatic stress symptomatology served as a mediator in the relationship between abuse type and participatory distress. The findings inform researchers and members of Institutional Review Boards on variables related to participatory distress in studies of child abuse. (shrink)

The author argues that in democracies a strong state and strong civil society are not mutually exclusive. Only a democratic, legitimate, and strong state can provide the environment for civil society activities to flourish; in return, only a strong and a participatory civil society can outline the reach of state strength vis-à-vis the society. The author discusses the need for civil society organizations to collaborate with policy-making institutions, in which they can negotiate policy concerns with ministers and officials while retaining (...) an independent distance from the state and the political parties. Further, the author argues that an environment as such would provide for the transformative capacity of human agency to manifest itself in full in a globalizing world. The author discusses how participatory state and civil society structures will enhance the role of the human agency in order to dissolve elite rule, especially in new democracies. (shrink)

Participatory Budgeting has by now been widely discussed, often celebrated, and is now instituted in at least 1,500 cities worldwide. Some of its central features—its structure of open meetings, its yearly cycle, and its combination of deliberation and representation—are by now well known. In this article, however, we critically reflect on its global travel and argue for more careful consideration of some of its less well-known features, namely the coupling of the budgeting meetings with the exercise of power. We disaggregate (...) PB into its communicative and empowerment dimensions and argue that its empowerment dimensions have usually not been part of its global expansion—and this is cause for concern from the point of view of emancipation. We thus discuss the specific institutional reforms associated with empowerment in the original version as well as its analytic dimensions. We also address some of the specific dangers of a communication-only version of PB as well as some suggestions for reintroducing empowerment. (shrink)

For valid informed consent, it is crucial that patients or research participants fully understand all that their consent entails. Testing and revising informed consent documents with the assistance of their addressees can improve their understandability. In this study we aimed at further developing a method for testing and improving informed consent documents with regard to readability and test-readers’ understanding and reactions. We tested, revised, and retested template informed consent documents for biobank research by means of 11 focus group interviews with (...) members from the documents’ target population. For the analysis of focus group excerpts we used qualitative content analysis. Revisions were made based on focus group feedback in an iterative process. Focus group participants gave substantial feedback on the original and on the revised version of the tested documents. Revisions included adding and clarifying explanations, including an info-box summarizing the main points of the text and an illustrative graphic. Our results indicate positive effects on the tested and revised informed consent documents in regard to general readability and test-readers’ understanding and reactions. Participatory methods for improving informed consent should be more often applied and further evaluated for both, medical interventions and clinical research. Particular conceptual and methodological challenges need to be addressed in the future. (shrink)

The paper explores the possibilities for promoting epistemic justice in a South African university setting through a participatory action-based photovoice research project in which university resea...

A wide variety of scientific research projects include public participation in roles going beyond the classic use of subjects in human subjects research. “Participatory research” is an umbrella term for such projects. In this chapter, we begin by surveying the variety of participatory research approaches across fields. We examine what goals participatory research projects seek to achieve, both of social and scientific value. Next, we apply this theoretical framework to challenges that participatory research faces. We then survey three typologies of (...) participatory research projects, each of which can illuminate and guide decisions in project development. We end with a look at participatory research approaches in health contexts, applying the theoretical resources we introduced earlier in the chapter. (shrink)

This paper describes a network of three interconnected, multidisciplinary research projects designed to investigate environmental health issues faced by First Nations in Canada. These projects, developed in collaboration with academia, used a participatory approach meant to build capacity, raise awareness, and initiate change. The first project, which began in British Columbia in 2008, gathered information on the traditional diet; for example, its composition, nutritional quality, and potential for chemical exposure. This 10-year, Canada-wide project served as a model for two follow-up (...) projects: one on biomonitoring and another on indoor air quality. All three projects provided community ownership over the data and communicated results in a culturally sensitive manner to encourage interest in research and initiate risk reduction activities. The Assembly of First Nations, a national advocacy organization representing over 630 First Nations communities across Canada, participated in all aspects of the research while coordinating communications and arranging timely dissemination of results. These projects showed how properly executed, community-based research can be a valuable tool for stimulating interest in scientific studies while promoting self-reliance, components often missing from academic research. (shrink)

Farmer participatory approaches were used to identify problems and needs as perceived by local people and to develop strategies to achieve fodder security in south Indian villages. Indigenous knowledge systems as they relate to agroforestry were explored. The farmer participatory approaches have laid the foundations for selecting appropriate agroforestry technologies and developing suitable fodder security policy options. Potential benefits and risks as a result of implementing agroforestry projects were also discussed.

While researchers have identified numerous problems with food systems, sustainable, just, and workable solutions remain scarce. Recent developments in the food justice literature, however, show which local food movements favor sustainability and justice as problem-solving measures. Yet, some of the ways that these approaches could work in concert are overlooked. Through focusing on how they are compatible, we can understand how such endeavors can improve the conditions for community control and reduce the detrimental effects of agribusiness. In this paper, the (...) author proposes a participatory budgeting project that involves a relatively new process called “vertical agriculture” to alleviate some of the harm that current agricultural practices cause. In turn, we see how such a measure can improve the integrity of municipal governance and reshape the power structures that control food systems. (shrink)

There is a strong need to connect agricultural research to social movements and community-based food system reform efforts. Participatory research methods are a powerful tool, increasingly used to give voice to communities overlooked by academia or marginalized in the broader food system. Plant breeding, as a field of research and practice, is uniquely well-suited to participatory project designs, since the basic process of observing and selecting plants for desirable traits is accessible to participants without formal plant breeding training. The challenge (...) for plant breeders engaged in participatory research is to consider not only how their work incorporates farmer input in developing new varieties, but also how it interacts with broader questions of food sovereignty, food justice, diversity and democratization in the food system. This article examines these issues in the context of the Seed to Kitchen Collaborative, a participatory variety evaluation and breeding project at the University of Wisconsin-Madison. (shrink)

Character strengths research has the potential to imply that youth have character deficits or moral failings that cause their problematic behavior. This ignores the impact of context, especially for youth who are members of historically marginalized groups in under resourced communities. On the other hand, framing youth who are members of underrepresented groups solely as products of oppression undermines their agency and the power of collective action. It may be possible to promote character development in a contextually relevant, culturally grounded (...) way through a transdisciplinary, participatory action approach. We engaged in this work in three phases: goal specification; logic model identification; and intervention development and testing. Lessons learned included the need for intensive trust-building and identifying the limitations in scope and capacity. Overall, a transdisciplinary, participatory action approach is a promising strategy to overcome the existing bias in virtue development research and to leverage positive psychology to address health disparities. (shrink)

This article draws insights from a case study examining unanswered health questions of residents in two polluted towns in an industrial region in southern France. A participatory health study, as conducted by the author, is presented as a way to address undone science by providing the residents with relevant data supporting their illness claims. Local residents were included in the health survey process, from the formulation of the questions to the final data analysis. Through this strongly participatory science process, the (...) townspeople offered many creative ideas in the final report for how the data could be used to assist in improving their health and environment and policy work is already in evidence, resulting from the study. Drawing from the literature on participatory science and expertise as well as from the initial outcomes of the local health study, I propose that SPS produces a form of knowledge justice. Understanding knowledge and its making as part of a social justice agenda aligns well with environmental justice frames. Through SPS, local residents have a hermeneutical resource to make sense of their embodied lives and augment their claims with strong data supporting actions for improving their health and environment. (shrink)

Current theories of social cognition are mainly based on a representationalist view. Moreover, they focus on a rather sophisticated and limited aspect of understanding others, i.e. on how we predict and explain others’ behaviours through representing their mental states. Research into the ‘social brain’ has also favoured a third-person paradigm of social cognition as a passive observation of others’ behaviour, attributing it to an inferential, simulative or projective process in the individual brain. In this paper, we present a concept of (...) social understanding as an ongoing, dynamical process of participatory sense-making and mutual incorporation. This process may be described (1) from a dynamical agentive systems point of view as an interaction and coordination of two embodied agents; (2) from a phenomenological approach as a mutual incorporation, i.e. a process in which the lived bodies of both participants extend and form a common intercorporality. Intersubjectivity, it is argued, is not a solitary task of deciphering or simulating the movements of others but means entering a process of embodied interaction and generating common meaning through it. This approach will be further illustrated by an analysis of primary dyadic interaction in early childhood. (shrink)

In the last decade, many arguments have emerged for encouraging public participation in environmental policy making and management While some have argued that, in democratic societies, people simply have a right to a participatory role, others base arguments for public participation on the idea that lay people may have access to knowledge which is unknown to officially sanctioned experts. Local people may count as experts about aspects of their neighbourhood or they may have insights into the behaviour of plant operators (...) that is thought to give rise to pollution. This paper reports on a novel empirical approach to analysing and capturing such 'lay' understandings. This technique, developed in ESRC-funded work in the UK, uses community mapping exercises in urban centres to produce spatial representations of local knowledges about air pollution and related problems of noise and odour. In the paper the technique is outlined, presenting data from the three-city case study. The paper concludes by assessing the ways in which participatory modelling can contribute to the local governance of air quality. (shrink)

This paper examines the adoption and application of a participatory approach to the transfer of scientific research to farmers with the objective of supporting government policies for sustainable agriculture. Detailed interviews with scientists and farmers in two case studies in New Zealand are used to identify the potential and constraints of such an approach. One case study involves Māori growers wishing to develop organic vegetable production; the other involves commercial wheat farmers who want to improve their profitability and face major (...) problems of groundwater nutrification. The paper concludes that while both case studies are characterized as successful by those involved, there is an inherent creative tension between the adoption of a participatory approach and its use to advance public policy goals. (shrink)

This chapter introduces the participatory art museum and discusses some of the challenges it raises for philosophical aesthetics. Although participatory art is now an essential part of museological programming, an aesthetic account of participatory art is still missing. The chapter argues that much could be gained from exploring participatory art, as it raises fundamental challenges to our understanding of issues in aesthetics, such as the nature of aesthetic experience, the value of art, and the role of the spectator. Moreover, participatory (...) art fundamentally questions the status of the museum as an exhibition space for contemporary art practices. (shrink)

We draw on Alasdair MacIntyre's virtues, practices, and institutions schema to argue that employee participation in governance practices can play an important role in developing virtue. Whereas MacIntyre's schema has been most widely employed to understand how productive practices can cultivate virtue, we focus instead on the way that meaningful deliberation about the common good can provide experiences requiring employees to exercise the virtues. We then apply this theoretical framework to an analysis of the Mondragon Cooperative Corporation. Our analysis emphasizes (...) the importance of participatory governance over employee ownership. Based on this analysis, we draw several implications for increasing participatory governance in a way that will prevent shareholder maximization from crowding out virtue, even in corporate contexts where productive activity itself does not provide a meaningful, virtue-instilling experience. (shrink)

Public extension services play a key role in the implementation of strategies for rural development based on the sustainable management of natural resources. However, the sector suffers from restricted financial and human resources. Using experiences from participatory action research, a strategy for rural extension in the Amazon was defined to increase the efficiency and the relevance of external support for local resource users. This strategy considered activities initiated and coordinated by local people. Short-term facilitation visits provided continuous external support for (...) the purpose of establishing locally based planning and learning mechanisms. In collaboration with the municipality of Muaná in the Eastern Amazon, the strategy was tested in two traditional communities – Monte Moriat and Boa Esperança. Both communities recognized as most important the need to reduce their dependence on açaí (Euterpe oleracea Mart.), the principal source of food and income. This forest resource has been overexploited, seriously affecting açaí stands and diminishing the forest benefits fundamental for survival. Two local groups decided to raise chickens as a way to reduce nutritional problems and as an alternative source of income. Supported by monthly, short-term planning and evaluation visits, the groups managed to achieve significant progress in their endeavor. The groups identified (1) the control of decision-making and information, and (2) the absence of external obligations to be the greatest advantages of the development initiative. The study confirmed the potential of participatory strategies for public extension in the Amazon. Special attention was given to realistically define the role of forests for local development. However, drastic measures are necessary to smooth the way for real participation in governmental and non-governmental organizations acting in the Brazilian Amazon. (shrink)

BackgroundA requisite for ethical human subjects research is that participation should be informed and voluntary. Participation during the informed consent process by way of asking questions is an indicator of the extent to which consent is informed.AimsThe aims of this study were to assess the extent to which parents providing consent for children's participation in an observational tuberculosis (TB) research study in India actively participated during the informed consent discussion, and to identify correlates of that participation.MethodsIn an observational cohort study (...) of tuberculosis in infants in South India, field supervisors who were responsible for obtaining informed consent noted down questions asked during the informed consent discussions for 4,382 infants who were enrolled in the study. These questions were post-coded by topic. Bivariate and multivariate analysis was conducted to examine factors associated with asking at least one question during the informed consent process.ResultsIn total, 590 out of 4,382 (13.4%) parents/guardians asked any question during the informed consent process. We found that the likelihood of parents asking questions during the informed consent process was significantly associated with education level of either parent both parents being present, and location.ConclusionsThe findings have implications for planning the informed consent process in a largely rural setting with low levels of literacy. Greater effort needs to be directed towards developing simple participatory communication materials for the informed consent process. Furthermore, including both parents in a discussion about a child's participation in a research study may increase the extent to which consent is truly informed. Finally, continuing efforts need to be made to improve the communication skills of research workers with regard to explaining research processes and putting potential research participants at ease. (shrink)

In the Sheeb area in eastern Eritrea a Participatory Rural Appraisal(PRA) was carried out in two villages, one upstream and one downstreamof the ephemeral rivers Laba and Mai-ule. The objectives of the studywere to obtain a better understanding of farmer-managed spate irrigationsystems and to enable the local people to perform their own farmingsystem analysis. This paper describes the various PRA activities, suchas mapping, diagramming and ranking of problems, that were undertakenwith the participation of local people. The resource mapping revealedthat lack (...) of water and not scarcity of land is the main constraintaffecting the development of the spate irrigation system in the Sheebarea. When there is a lack of rainfall in the highlands of Eritrea,there are only few floods per year in the Sheeb area. The developmenttrend diagrams showed that the number of floods, the food production andthe prevalence of pests vary considerably over time. The livelihooddiagrams indicated that food, fodder, and water were only availableduring part of the year. In search of these resources, the farmers havedeveloped a livelihood strategy of seasonal migration to the highlandsof Eritrea. The PRA data collected in the two villages appeared to bevery useful for the preparation of community action plans in the entireSheeb area. (shrink)

In this article, I argue for the value of participatory methodologies, in research with children, which aims to privilege their epistemologies and living experiences in relation to the nature of self. Researching self with children raises questions about the mainstream materialist paradigm which holds hegemony over most academic disciplines – and, importantly, over the life worlds of everyday people. Children’s experiences of self, others and the world challenge the dominant materialist paradigm, requiring investigation into other metaphysical models of reality, that (...) may have more explanatory power than materialism. I address this by appealing to a body of scholarship referred to as ‘postmaterialist’. Reauthoring our nature as human beings carries an increasing importance and urgency in the face of current ecological, economical and health crises. I argue that any research, which seeks to facilitate social transformation through everyday people, needs to begin by asking ontological questions about the nature of the self - the subject of experience who holds and reports epistemological authority over their subjective experiences. (shrink)

The contributors to this volume argue that we can, and they offer a new way: the "participatory turn," which proposes that individuals and communities have an ...

Taking insights from the philosophy of science and technology, theories of participatory democracy and Critical Theory, the author tackles and explores how democratic participation in scientific research and technological innovation could be possible, as a deliberative means of improving the rational basis for the development of modern society.

Third-party certification, the most common organic certification system, has faced growing criticism in recent years. This has led to the development of alternative certification systems, most of which can be classed as Participatory Guarantee Systems. PGS have been promoted as a more suitable, cheaper and less bureaucratic alternative to TPC for local markets and are associated with additional benefits such as empowering smallholder farmers, facilitating farmer-to-farmer learning and enhancing food security and sovereignty. PGS have spread rapidly in the past few (...) years, but studies suggest that they are facing numerous challenges that, if not addressed, may jeopardise these benefits. Using the example of three Mexican PGS initiatives, this paper explores the main challenges faced by PGS, specifically those predominantly found in producer-run PGS initiatives. Based on producer and consumer surveys, semi-structured and informal interviews, and participant and non-participant observation, the key challenges that emerged were continuous implementation of the certification process, time constraints, personal conflicts and conflict avoidance. The paper further argues that the requirements for PGS recognition under the Mexican Law for Organic Products may also threaten the continued existence of PGS and suggests that mechanisms for managing conflicts, incentivising PGS participation and mitigating opportunity costs are key if PGS are to continue to develop. (shrink)

In the final parts of Piketty’s Capital and Ideology, he presents his vision for a just and more equal society. This vision marks an alternative to contemporary societies, and differs radically both from the planned Soviet economies and from social democratic welfare states. In his sketch of this vision, Piketty provides a principled account of how such a society would look and how it would modify the current status of private property through co-managed enterprises and the creation of temporary ownership (...) models. He also sets out two principles for when inequalities are just. The first principle permits inequalities that are beneficial to the worst-off, while the second permits inequalities that reflect differences in people’s choices and ambitions. This article identifies a tension between Piketty’s two inequality-permitting principles. It also argues that the procedural limits on how decisions are made within the enterprises of participatory socialism might create inequalities not permitted by the guiding distributive principles of participatory socialism. This tension points to the need for either further changes in firm structure and ownership, an even more progressive taxation scheme, or an egalitarian ethos reflected in citizens’ choices in their everyday lives under participatory socialism. (shrink)

To accomplish a just transition, energy scenarios is a helpful tool. Participatory and deliberative methods are increasingly used when constructing and assessing energy scenarios to improve the democratic legitimacy of the results. This article contributes to the scientific debate by analyzing how such methods can include considerations of justice issues in a more systematic manner. It is based on a study of four workshops conducted in Sweden, in which the participants discussed different energy scenarios from a justice perspective. It discusses (...) what can be achieved by methods for participatory-deliberative ethics assessment of the consequences of energy scenarios and how such methods should be designed. (shrink)

A new multi-disciplinary degree program in education and information studies was developed to uniquely facilitate educators’ capacity to be responsive to the demands of a digitally connected world. Charles Sturt University’s Master of Education (Knowledge Networks and Digital Innovation) aims to develop agile leaders in new cultures of digital formal and informal learning. The co-construction of knowledge through interpersonal discourse creates a pedagogical tension between a focus on knowledge-based instruction and outcomes, and on praxis-based instruction. This digital context draws attention (...) to academic integrity issues in online learning environments. Through the new subject Game-Based Learning, students engaged in theory, practice, trends in game designs and immersive aspects of game, utilizing the technology and pedagogical affordances of a range of online tools. The subject builds on the keystone subject and incorporates reflective participation and a culture of participatory learning through integration of social media, social scholarship and open sharing of ideas, resources and experiences online within the broader education community. Subject engagement and assessment design incorporated academic integrity strategies, and needed individual and group collaboration to be fully integrated into the learning experience of the students, thus modeling practices relevant to the student’s own processional practices. This paper also considers the contribution of global connectedness to the success of the pedagogic processes used for embedding academic integrity through social scholarship into the curriculum and learning experiences. (shrink)

Research question/aim/objectives Providing care for hospitalized children causes moral distress to nurses. Employee participation in discovering and solving the everyday problems of the workplace is one of the ways to hear the voices of nurses. This study aimed to evaluate the effect of participatory management programs on perceived organizational support and moral distress in pediatric nurses. Research design A quasi-experimental study. Participants and research context The present study was conducted on 114 pediatric nurses in Iran. Data were collected using the (...) Perceived Organizational Support Scale and the Moral Distress Scale of nurses. The intervention included implementing a participatory management program in three treatment departments that were randomly selected and it lasted 4 months. Participatory management was at the level of problem-solving with a focus on investigating, solving, and correcting issues and problems of work shifts and departments concerning the physical environment, equipment of the department, improvement of work processes, and team cooperation. In the control group, ordinary organizational approaches to problem-solving were used. Ethical considerations This study was approved by the Ethics Committee of Mashhad School of Nursing and Midwifery. Informed consent was obtained from the study participants. Findings/results Based on the results, both groups were homogenous before the intervention in terms of moral distress and perceived organizational support. The results showed that the moral distress mean scores in the intervention group decreased from 1.45 (0.52) to 1.03 (0.37) after the intervention. Also, the score of the perceived organizational support was 2.12 (1.2) increased after the intervention to 2.68 (1.10) in the intervention group. Conclusions It was found that the participation of nurses in the problem-solving process to solve daily workplace issues can be effective in increasing their perceived organizational support and reducing their moral distress. (shrink)

Mobile health research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE platform now features a community forum, a resource library and a network of nearly 600 (...) global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter. (shrink)

Participatory modeling in sustainability science allows scientists to take stakeholders’ interests, knowledge and values into account when designing a model-based solution to a sustainability problem, by incorporating stakeholders in the model-building process. This improves the chance of generating socially robust knowledge and consensus on solutions. Part of what helps in this regard is that scientists, through involving stakeholders, limit their own values from influencing the outcome, thus achieving some level of value-neutrality. We argue that while it might achieve this to (...) some extent, it comes at a cost to the reliability of the outcomes, which is ethically problematic. (shrink)

The wellbeing that can accrue to individuals through their participation in collective endeavours, here called their participatory wellbeing, is a fundamental component of human wellbeing more broadly. It is also difficult to conceptualize, let alone quantify, and has been neglected in philosophy, apparently falling into a gap between the literature on collective agency and the literature on wellbeing. As a contribution towards filling in that gap, this chapter uses the notion of a role within a group—encompassing anything from familial and (...) professional roles to being a friend or a citizen—to solve a puzzle about participatory wellbeing. The puzzle, crudely stated, is that while wellbeing is an essentially individualistic notion, participation is essentially social. By conceiving of participation as a matter of occupying and performing a role, we can recognize and model the complexity (i.e. the multifaceted nature) of participatory wellbeing. (shrink)

Participatory budgeting (PB) is a paradigm that empowers residents to directly decide how a portion of the public budget is spent. Specifically, residents deliberate over spending priorities and vote over how the budget should be allocated to different public projects. As such it is a mechanism of top-down transfer of decisions on the part of budgetary expenditure to citizens. In recent years, PB has become a central topic of discussion and an important field of innovation for those involved in local (...) development, considered one of the most successful democratic innovations of the last 25 years. Participatory budgeting contributes significantly to participatory democracy, inclusiveness processes and placemaking, but some factors limit the scale of these aspects. However, a relatively simple idea – that “ordinary citizens” should have a direct say in public budgets that impact them – has travelled the world by the most unexpected routes and landed in unlikely sites. There is no precise model for PB programmes. While there are similar tenets and institutional mechanisms, PB programmes are structured in response to each city or state’s particular political, social and economic environment. Therefore, it is necessary to consider to what extent PB strengthens the discussed processes, whether it allows reaching new, inactive groups of citizens and includes them in the decision-making process regarding shaping public spaces. The popularity of this tool carries the risk that it will be used to build the image of local government instead of significantly increasing the participation of citizens in deciding on local public spaces. The chapter aims to present and analyse participatory budgeting practices in four European and North American countries (Switzerland, Poland, North Macedonia and the United States of America) to show the role of PB in placemaking processes by the levels and forms of participation, the analysis of representativeness of PB participants (inclusiveness), placemaking impact and its level of digitisation. The proposed comparative analysis allows for assessing the importance of the tool for increasing social participation, which is participatory budgeting, for understanding its limitations and suggesting directions for its improvement to shape more inclusive, friendly and open public spaces. (shrink)

This participatory study recounts conversational practices occurring between three teachers, a head of school, and a researcher during a month-long curriculum design workshop mediated by the MagicSchool AI technology to create social studies, language arts, science, and mathematics lessons for a virtual special education program. A social paradigm of AI-mediated educational practices is presented, wherein teachers interact with AI tools by embodying co-agency and a spirit of inquiry. Collective practices are interpreted using Gordon Pask’s conversation theory framework, showcasing how to (...) design systems of human-AI feedback loops devoted towards curriculum design. Meeting transcriptions, AI-prompt data, AI-mediated lesson plans, teacher feedback, and final products are shared using narrative inquiry to illustrate how collaborative co-agency culminated in lesson plans that co-observers felt confident in deploying. (shrink)

What sorts of things can individuals have rights to? In this paper I consider one influential negative claim: that individuals cannot have rights to so-called “participatory goods”. I argue that this claim is mistaken. There are two kinds of counter-examples, what I call “actualization rights” and “conditional rights”. Although the scope for individual actualization rights to participatory goods may be relatively narrow, individual conditional rights to participatory goods are both common and important: they are one of the main vehicles that (...) the realm of rights has for protecting and promoting the interests that individuals have in participatory goods. (shrink)