In this article, an attempt was made to identify the level of community social participation according to age, gender and the structural characteristics of the personal support networks in a population displaced by floods in the Colombian Caribbean. The research was based in a non-experimental methodology with an associative-relational strategy. An intentional non-probabilistic sample of 151 people affected by the winter wave in the south of the Department of Atlántico (Colombia) was selected. In total, the study included 42 males (...) (27.8 %) and 109 females (72.2 %) participants, with an average age of 37.48 (±14, Range 18 - 80) and average relocation time of 21.79 months (± 8.22, Range 5-36). The Arizona Social Support Interview Schedule (ASSIS) and Community Empowerment instruments were responded to with an instrument adapted from the leadership competence factor. The results show lower rates of intermediation in the older population, and the relationship between social participation and gender shows equally cohesive social support networks in men and women. This evidence is discussed to promote psychosocial interventions aimed to increase community engagement and empowerment of people that have experienced non-voluntary mobility processes. (shrink)

Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. The standard view (...) of the conditions for valid consent therefore implies that these people have failed to give valid consent to research participation. In this paper we argue that the standard view is false. The primary function of the requirement that researchers disclose information about a study is the avoidance of illegitimate control over someone’s consent decision, which is a form of fraud.We derive the content and manner of appropriate disclosure by analysing the ways in which the manipulation of information can invalidate consent. Our analysis shows that the informational requirements for valid consent are conceptually distinct and thus unlikely to have identical contents. This implies that consent can be valid when not everything that ought to be disclosed by the person asking for consent is understood by the person who proffers it. (shrink)

A growing literature documents the existence of individuals who make a living by participating in phase I clinical trials for money. Several scholars have noted that the concerns about risks, consent, and exploitation raised by this phenomenon apply to many (other) jobs, too, and therefore proposed improving subject protections by regulating phase I trial participation as work. This article contributes to the debate over this proposal by exploring a largely neglected worry. Unlike most (other) workers, subjects are not paid (...) to produce or achieve anything but to have things done to them. I argue that this passivity is problematic for reasons of distributive justice. Specifically, it fails to enable subjects to realize what Gheaus and Herzog call “the goods of work”—a failure not offset by adequate opportunities to realize these goods outside of the research context. I also consider whether granting subjects worker-type protections would accommodate this concern. (shrink)

Discursive deference in the governance of science and technology is rebalancing from expert analysis toward participatory deliberation. Linear, scientistic conceptions of innovation are giving ground to more plural, socially situated understandings. Yet, growing recognition of social agency in technology choice is countered by persistently deterministic notions of technological progress. This article addresses this increasingly stark disjuncture. Distinguishing between “appraisal” and “commitment” in technology choice, it highlights contrasting implications of normative, instrumental, and substantive imperatives in appraisal. Focusing on the role of (...) power, it identifies key commonalities transcending the analysis/participation dichotomy. Each is equally susceptible to instrumental framing for variously weak and strong forms of justification. To address the disjuncture, it is concluded that greater appreciation is required—in both analytic and participatory appraisal—to facilitating the opening up of governance commitments on science and technology. (shrink)

The availability of willing providers of medical assistance in dying in Canada has been an issue since a Canadian Supreme Court decision and the subsequent passing of federal legislation, Bill C14, decriminalised MAiD in 2016. Following this legislation, Hamilton Health Sciences in Ontario, Canada, created a team to support access to MAiD for patients. This research used a qualitative, mixed methods approach to data collection, obtaining the narratives of providers and supporters of MAiD practice at HHS. This study occurred at (...) the outset of MAiD practice in 2016, and 1 year later, once MAiD practice was established. Our study reveals that professional identity and values, personal identity and values, experience with death and dying, and organisation context are the most significant contributors to conscientious participation for MAiD providers and supporters. The stories of study participants were used to create a model that provides a framework for values clarification around MAiD practice, and can be used to explore beliefs and reasoning around participation in MAiD across the moral spectrum. This research addresses a significant gap in the literature by advancing our understanding of factors that influence participation in taboo clinical practices. It may be applied practically to help promote reflective practice regarding complex and controversial areas of medicine, to improve interprofessional engagement in MAiD practice and promote the conditions necessary to support moral diversity in our institutions. (shrink)

One of the most urgent debates of our time is about the exact role that new technologies can and should play in our societies and particularly in our public decision-making processes. This paper is a first attempt to introduce the idea of CrowdLaw, defined as online public participation leveraging new technologies to tap into diverse sources of information, judgments and expertise at each stage of the law and policymaking cycle to improve the quality as well as the legitimacy of (...) the resulting laws and policies. First, we explain why CrowdLaw differs from many previous forms of political participation. Second,we reproduce and explain the CrowdLaw Manifesto that the rising CrowdLaw community has elaborated to foster such approaches around the world. Lastly, we introduce some preliminary considerations on the notions of justice, legitimacy and quality of lawmaking and public decision-making, which are central to the idea of CrowdLaw. (shrink)

Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. The standard view (...) of the conditions for valid consent therefore implies that these people have failed to give valid consent to research participation. In this paper we argue that the standard view is false. The primary function of the requirement that researchers disclose information about a study is the avoidance of illegitimate control over someone’s consent decision, which is a form of fraud.We derive the content and manner of appropriate disclosure by analysing the ways in which the manipulation of information can invalidate consent. Our analysis shows that the informational requirements for valid consent are conceptually distinct and thus unlikely to have identical contents. This implies that consent can be valid when not everything that ought to be disclosed by the person asking for consent is understood by the person who proffers it. (shrink)

Most regulations and guidelines require that potential research participants be told a great deal of information during the consent process. Many of these documents, and most of the scholars who consider the consent process, assume that all this information must be disclosed because it must all be understood. However, a wide range of studies surveying apparently competent participants in clinical trials around the world show that many do not understand key aspects of what they have been told. The standard view (...) of the conditions for valid consent therefore implies that these people have failed to give valid consent to research participation. In this paper we argue that the standard view is false. The primary function of the requirement that researchers disclose information about a study is the avoidance of illegitimate control over someone’s consent decision, which is a form of fraud.We derive the content and manner of appropriate disclosure by analysing the ways in which the manipulation of information can invalidate consent. Our analysis shows that the informational requirements for valid consent are conceptually distinct and thus unlikely to have identical contents. This implies that consent can be valid when not everything that ought to be disclosed by the person asking for consent is understood by the person who proffers it. (shrink)

This paper aims to provide an overview of surveillance theories and concepts that can help to understand and debate surveillance in its many forms. As scholars from an increasingly wide range of disciplines are discussing surveillance, this literature review can offer much-needed common ground for the debate. We structure surveillance theory in three roughly chronological/thematic phases. The first two conceptualise surveillance through comprehensive theoretical frameworks which are elaborated in the third phase. The first phase, featuring Bentham and Foucault, offers architectural (...) theories of surveillance, where surveillance is often physical and spatial, involving centralised mechanisms of watching over subjects. Panoptic structures function as architectures of power, not only directly but also through disciplining of the watched subjects. The second phase offers infrastructural theories of surveillance, where surveillance is networked and relies primarily on digital rather than physical technologies. It involves distributed forms of watching over people, with increasing distance to the watched and often dealing with data doubles rather than physical persons. Deleuze, Haggerty and Ericson, and Zuboff develop different theoretical frameworks than panopticism to conceptualise the power play involved in networked surveillance. The third phase of scholarship refines, combines or extends the main conceptual frameworks developed earlier. Surveillance theory branches out to conceptualise surveillance through concepts such as dataveillance, access control, social sorting, peer-to-peer surveillance and resistance. With the datafication of society, surveillance combines the physical with the digital, government with corporate surveillance and top-down with self-surveillance. (shrink)

The virtual brand community has become an important marketing tool for companies. A successful brand community marketing strategy should attract a large number of consumers. Although past studies have revealed consumer motivations for participating in virtual brand communities, they fail to answer an important question: Why is it so easy for some virtual brand communities to attract users while others have such difficulty? In this study, product characteristics are hypothesized to be important factors that determine consumer motivation to participate in (...) brand communities. Product characteristics can directly affect how actively consumers participate in brand communities. The results of questionnaires show that product complexity, product symbolism, and product satisfaction have a positive influence on consumers’ willingness to participate in brand communities. Notably, the duration of product use has a regulating effect on the influence of product satisfaction and product symbolism. A long period of product use weakens the influence of product satisfaction on consumers’ willingness to participate in brand communities. On the contrary, a long period of product use strengthens the influence of product symbolism on consumers’ willingness to participate in brand communities. This study enriches the literature on brand community participation and has implications for companies that aim to utilize brand communities for marketing. (shrink)

In the Doctrine of Virtue Kant divides duties of love into three categories: beneficent activity , gratitude and Teilnehmung – commonly referred to as the duty of sympathy . In this paper I will argue that the content and scope of the third duty of love has been underestimated by both critics and defenders of Kant's ethical theory. The account which pervades the secondary literature maintains that the third duty of love includes only two components: an obligation to make use (...) of our natural receptivity to sympathetic feelings as a means to fulfilling other duties of love, and an indirect duty to cultivate these feelings. As a result, Kant's duty of sympathy has been widely regarded as a duty whose value is derived from the way in which it serves other duties, in particular, the duty of beneficent activity, which obliges agents ‘to promote according to one's means the happiness of others in need’ . Teilnehmung has thus assumed something of a second-class status among the duties to others. My aim in this paper is to demonstrate that the prevailing account of Kant's third duty of love is incomplete. (shrink)

uBiome offers a gut bacteria sequencing service to consumers to entice data donation. It aims to establish a genomic repository for microbiomics. In 2013, some bloggers worried that uBiome operations had not received any Institutional Review Board ethics approval. uBiome co-founders Richman and Apte replied by effectively arguing that crony research agencies hamper innovation by requiring cumbersome for-fee IRBs to so-called “citizen science” projects. The debate soon ascended from ethics to appropriate institutional design for research and innovation. I reconstruct the (...) ethical issues underpinning the uBiome-IRB debate and situate them in the emerging context of entrepreneurial science relying on crowdsourcing. This paper contributes to the dialogue between social scientists and bioethicists promoted in this volume by offering an analysis of a case study that requires attention to the organizational and economic context and lends itself to collaboration across disciplines. (shrink)

In voting theory, monotonicity is the axiom that an improvement in the ranking of a candidate by voters cannot cause a candidate who would otherwise win to lose. The participation axiom states that the sincere report of a voter’s preferences cannot cause an outcome that the voter regards as less attractive than the one that would result from the voter’s non-participation. This article identifies three binary distinctions in the types of circumstances in which failures of monotonicity or (...) class='Hi'>participation can occur. Two of the three distinctions apply to monotonicity, while one of those and the third apply to participation. The distinction that is unique to monotonicity is whether the voters whose changed rankings demonstrate non-monotonicity are better off or worse off. The distinction that is unique to participation is whether the marginally participating voter causes his first choice to lose or his last choice to win. The overlapping distinction is whether the profile of voters’ rankings has a Condorcet winner or a cycle at the top. This article traces the occurrence of all of the resulting combination of characteristics in the voting methods that can exhibit failures of monotonicity. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making in (...) pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Although inclusion in formal value chains extends the prospect of improving the livelihoods of rural small-scale producers, such a step is often contingent on compliance with internationally-promoted food safety standards. Limited research has addressed the challenges this represents for small rural producers who, grounded in culturally-embedded food safety conceptions, face difficulties in complying. We address this gap here through a multiple case study involving four public school feeding programs that source meals from local rural providers in the Bolivian Altiplan. Institutional (...) logics theory is used to describe public food safety regulations and to compare them to food safety conceptions in the local indigenous Aymara rural setting. We identify a value-based conflict that leads to non-compliance of formal food safety rules that jeopardizes the participation of small farmers in the market. These include: partial adoption of formal rules; selective adoption of convenient rules; and ceremonial adoption to avoid compliance. Decoupling strategies allow local actors to largely disregard the formal food safety regulations while accommodating traditional cultural practices and continuing to access the market. However, these practices put the long-term sustainability of the farmers’ participation in potentially favorable opportunities at risk. (shrink)

Background Ensuring individual free and informed decision‐making for research participation is challenging. It is thought that preliminarily informing communities through ‘community sensitization’ procedures may improve individual decision‐making. This study set out to assess the relevance of community sensitization for individual decision‐making in research participation in rural Gambia. Methods This anthropological mixed‐methods study triangulated qualitative methods and quantitative survey methods in the context of an observational study and a clinical trial on malaria carried out by the Medical Research Council (...) Unit Gambia. Results/discussion Although 38.7% of the respondents were present during sensitization sessions, 91.1% of the respondents were inclined to participate in the trial when surveyed after the sensitization and prior to the informed consent process. This difference can be explained by the informal transmission of information within the community after the community sensitization, expectations such as the benefits of participation based on previous research experiences, and the positive reputation of the research institute. Commonly mentioned barriers to participation were blood sampling and the potential disapproval of the household head. Conclusion Community sensitization is effective in providing first‐hand, reliable information to communities as the information is cascaded to those who could not attend the sessions. However, further research is needed to assess how the informal spread of information further shapes people's expectations, how the process engages with existing social relations and hierarchies (e.g. local political power structures; permissions of heads of households) and how this influences or changes individual consent. (shrink)

Building on recent theories ofscience in society, such as that provided bythe `Mode 2' framework, this paper argues thatgovernments should reconsider existingrelations among decision-makers, experts, andcitizens in the management of technology.Policy-makers need a set of ` technologies ofhumility' for systematically assessing theunknown and the uncertain. Appropriate focalpoints for such modest assessments are framing,vulnerability, distribution, and learning.

Successful innovations are deemed to be necessary requisites for enterprise success. On the other hand, works council participation and employee participation are judged differently as either fostering employee and enterprise benefits or only the former or even none. Both forms of participation have found diverging theoretical and empirical argumentations regarding innovations. Here, we argue and show empirically that both forms of participation deliver positive contributions to innovation success, economically and employee-related, substantiated with qualitative reports from 36 (...) process innovation cases and quantitative data from 44 cases. Qualitative case analyses reveal different profiles of works council participation depending on the innovation type. Independent of the innovation types, more successful innovations are marked by more intensive participation. Quantitative examinations of a causal model with path analysis specify how this is achieved: works council and employee participation further the growth of appropriate knowledge and the former also raises the coordination capability; both are essential preconditions for innovation success. A direct impact of works councils on innovation success complements the indirect effects. The slightly modified path analysis explains 53% of the innovation success variance. (shrink)

While fraught with ambiguities, support for greater public participation in environmental policy making is experiencing a renaissance amongst sections of government and academia, particularly within the field of land-use planning. There is concern within this cohort that the planning system silences public voices through its current mechanisms for community involvement. Proponents of participation often presuppose that more public participation will produce both 'better' decisions and environmental benefits, but to date research has focused on the front-end, or 'processes', (...) of participation rather than the 'products' that result. While procedural aspects of public participation are important it is imperative that critical consideration is also given to what emerges from the participation that is being exalted. This paper addresses this concern by focusing on the products of a public participation exercise conducted in Luton, South-east England in order to consider what it is that 'silence knows'. (shrink)

There is currently a gap between assessment and intervention in the literature concerned with climate change and food. While intervention is local and context dependent, current assessments are usually global and abstract. Available assessments are useful for understanding the scale of the effects of climate change and they are ideal for motivating arguments in favor of mitigation and adaptation. However, adaptation projects need assessments that can provide data to support their efforts. This requires the adoption of a more local and (...) context-sensitive approach to assessments. I suggest that Community-Based Participatory Research has the potential to be a tool for such an approach. (shrink)

This study focused on the frequency of social media use. Through investigating and verifying the correlations between social media use frequency, online political participation, and social capital, we derived two models of socialization that affect citizen well-being and, accordingly, proposed strategic suggestions for democratic society construction and network management. This study drew upon the 2019 Taiwan Communication Survey database and used structural equation modeling as a statistical method to explore the causal relationship between these four variables. The data analysis (...) yielded an overall good fit with the overall fit indicators: χ2 = 214.417, df = 84, p = 2.293, RMSEA = 0.028, GFI = 0.998, CFI = 0.986, SRMR = 0.066, and CN = 993.411. Future communication scholars who wish to explore issues related to new media users can draw on this model for subsequent research. (shrink)

BackgroundClinical trials involving children previously considered unethical are now considered essential because of the inherent physiological differences between children and adults. An integral part of research ethics is the informed consent, which for children is obtained by proxy from a consenting parent or guardian. The informed consent process is governed by international ethical codes that are interpreted in accordance with local laws and procedures raising the importance of contextualizing their implementation.FindingsIn Zimbabwe the parental informed consent document for children participating in (...) clinical research is modeled along western laws of ethics and requires that the parent or legally authorized representative provide consent on behalf of a minor. This article highlights the experiences and lessons learnt by Zimbabwean researchers in obtaining informed consent from guardians of orphaned children participating in a collaborative HIV clinical trial involving the Medical Research Council, United Kingdom and four centers, three of which are in Uganda. Researchers were faced with a situation where caregivers of orphaned children were not permitted to provide informed consent for trial participation. The situation contrasted with general clinical practice where consent for procedures on orphans is obtained from their caregivers who are not legal guardians.ConclusionThe challenges faced in obtaining informed consent for orphans in this clinical trial underscores the need for the Zimbabwe ethics committee to develop an ethical and legal framework for pediatric research that is based on international guidelines while taking into account the cultural context. The Medical Research Council of Zimbabwe has since started the process that is expected to involve critical stakeholders namely the community including children, ethicists, the legal fraternity and researchers. (shrink)

Just as burnout is manifested through changes in behavioural and communication patterns, it is important to examine whether certain aspects of communication can affect student burnout development. Therefore, this study aims to investigate the relationship between communication and academic burnout. To achieve this, the study proposes an integrated model examining the effects of three communication dimensions – support from academic staff, support from colleagues, and participation in decision-making – on four different dimensions of academic burnout, as well as students’ (...) overall burnout. The model is tested using structural equation modelling (SEM) analysis. High coefficients of determination regarding particular burnout dimensions validate the strength of the proposed model. The results show that support from academic staff and support from fellow students significantly and negatively influence academic burnout, and might be instrumental in its reduction. Unexpectedly, participation in decision-making is shown to be positively related to academic burnout. (shrink)

Plato in the Laws proposes a simulation of nearly ideal conditions regarding the experts’ persuasion and observes that even in these circumstances some citizens will not agree with the epistemic authorities. In this paper, such situations are labelled as exhibiting persistent dissent. Plato maintains that persistent dissenters lack the virtue of sōphrosynē, but its meaning is notoriously difficult to decipher. This paper offers to examine the role of sōphrosynē in tackling persistent dissent in light of Plato’s reflections on civic (...) class='Hi'>participation. This angle will not only uncover the epistemic aspect of sōphrosynē that lays the groundwork for persuasion, but it will also give a less optimistic assessment of the civic theory of the Laws, whilst simultaneously widening our own understanding of the range of disagreements between the experts and the non-experts and the difficulties in removing them. (shrink)

Corporate community involvement is often regarded as means of development in developing countries. However, CCI is often criticised for patronage and insensitivity both to context and local priorities. A key concern is the extent of 'community participation' in corporate social decision-making. Community participation in CCI offers an opportunity for these criticisms to be addressed. This paper presents findings of research examining community participation in CCI governance undertaken by Magadi Soda Company in Kenya. We draw on socio-political governance (...) and interaction theories to examine the institutionalisation of participatory decision-making and its impact on changing governing roles and social action in CCI over time. (shrink)