Researchers and others involved in the research enterprise from 12 African countries met with those working in ethics and oversight in the United States as part of an effort to develop research ethics capacity. Drawing on a wealth of experience among participants, discussions at the meeting revealed five categories of issues that warrant careful attention by those engaged in similar efforts as well as international policymakers and those charged with oversight of research. (1) Principal investigators should build ‘true research teams’ (...) where members of the team are meaningfully involved in decisions regarding the protocol and its implementation. (2)There should be explicit discussion about the ‘standard of care’ at the outset of project planning that includes clarification of the terminology that is being used. (3) While internationally collaborative research may involve populations that have inherent vulnerabilities, it is important to recognize the limitations of host country solutions (such as elaborated consent processes) and look for means to negotiate appropriate protections for those willing to participate. (4) In conducting research involving biological materials it would be prudent to develop material transfer agreements at the outset of the study to clarify expectations and to minimize the likelihood of harm. (5) Those engaged in internationally collaborative research need to be alert to the potential conflicts of interests of host country ethics committees during the approval process and to take measures to manage them if they indeed exist. (shrink)

With massive corruption uncovered in numerous recent corporate scandals, investigating psychological processes underlying unethical behavior among employees has become a critical area of research for organizational scientists. This article seeks to explain why people engage in deceptive and fraudulent activities by focusing on the use of moral-disengagement tactics or rationalizations to justify egregious actions at work. In addition, participation in goal-setting is argued to attenuate the relationship between moral disengagement and unethical behavior. Across two studies, a lab simulation and (...) field survey, a measure of moral disengagement was developed for use with working adults. The hypothesized main and interactive effects of moral disengagement, participation, and unethical behavior were tested and largely confirmed. (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)

Citizen participation today needs to be understood as both an empowerment practice to create urban futures as well as the perpetuation of entrepreneurial and neoliberal modes of planning. The exponential progress of technologies and the digitalisation of everyday life have led to a surge of innovation. Since hybridity has become a key factor, citizen participation now involves citizens and governments meeting online and offline in a multi-stakeholder setting to plan the city in parallel layers, often according to controversial (...) or even contradictory logic (Horelli et al., 2015). As digital citizen participation opens up new tools and means to mobilise people and shape urban futures, this chapter analyses these new aspects through the categories of top-down/bottom-up participation as well as formal/informal practices. Using four case studies comparatively, our aim with this chapter is to find a new theoretical basis and contextualisation for digital citizen participation. The case studies are situated across Europe and North America: we study participatory budgeting in Helsinki, digitalising citizen participation in Lubbock, Texas, the National Map of Security Threats in Poland, and digital placemaking by a grassroots movement in an urban planning participation process in Zürich, Switzerland. The findings of the article show that (1) digital citizen participation fosters novel multi-actor networks negotiating governance of the urban space, (2) studies of citizen participation need to acknowledge the multi-layered hybridity and (3) new modes of governance enable novel senses of informality in participation. (shrink)

In this paper, I argue that the asymmetrical mediated communication of the broad democratic public sphere can profitably be understood through the lens of deliberative democracy only if we adopt a system approach to deliberation. A system approach, however, often introduces a division of labor between ordinary citizens and experts. Although this division of labor is unavoidable and I believe compatible with a deliberative principle of legitimacy, it flirts with elitist theories of democracy: epistemic elites come up with the agendas, (...) ideas, and policy positions and democratic publics ratify or repudiate the agendas but do not generate or really engage with them. This I argue would violate an essential defining feature of deliberative democracy, namely that epistemic quality and equal participation are tightly linked. I turn to Habermas and his idea of a feedback loop as a possible solution to this dilemma. (shrink)

In “Flourish,” Martin Seligman maintained that the elements of well-being consist of “PERMA: positive emotion, engagement, relationships, meaning, and accomplishment.” Although the question of what constitutes human flourishing or psychological well-being has remained a topic of continued debate among scholars, it has recently been argued in the literature that a paradigmatic or prototypical case of human psychological well-being would largely manifest most or all of the aforementioned PERMA factors. Further, in “A Neuroscientific Perspective on Music Therapy,” Stefan Koelsch also suggested (...) that “Music therapy can have effects that improve the psychological and physiological health of individuals,” so it seems plausible that engaging in practices of music can positively contribute to one living a more optimally flourishing life with greater psychological well-being. However, recent studies on music practice and participation have not yet been reviewed and integrated under the PERMA framework from positive psychology to further explore and explicate this possibility. This article therefore contributes to extant work by reviewing recent research on psychological well-being and music to offer support for the claim that music practice and participation can positively contribute to one living a flourishing life by positively influencing their emotions, engagement, relationships, meaning, and accomplishment. (shrink)

Argumentation as the public exchange of reasons is widely thought to enhance deliberative interactions that generate and justify reasonable public policies. Adopting an argumentation-theoretic perspective, we survey the norms that should govern public argumentation and address some of the complexities that scholarly treatments have identified. Our focus is on norms associated with the ideals of correctness and participation as sources of a politically legitimate deliberative outcome. In principle, both ideals are mutually coherent. If the information needed for a correct (...) deliberative outcome is distributed among agents, then maximising participation increases information diversity. But both ideals can also be in tension. If participants lack competence or are prone to biases, a correct deliberative outcome requires limiting participation. The central question for public argumentation, therefore, is how to strike a balance between both ideals. Rather than advocating a preferred normative framework, our main purpose is to illustrate the complexity of this theme. (shrink)

The idea that payment for research participation can be coercive appears widespread among research ethics committee members, researchers, and regulatory bodies. Yet analysis of the concept of coercion by philosophers and bioethicists has mostly concluded that payment does not coerce, because coercion necessarily involves threats, not offers. In this article we aim to resolve this disagreement by distinguishing between two distinct but overlapping concepts of coercion. Consent-undermining coercion marks out certain actions as impermissible and certain agreements as unenforceable. By (...) contrast, coercion as subjection indicates a way in which someone’s interests can be partially set back in virtue of being subject to another’s foreign will. While offers of payment do not normally constitute consent-undermining coercion, they do sometimes constitute coercion as subjection. We offer an analysis of coercion as subjection and propose three possible practical responses to worries about the coerciveness of payment. (shrink)

American bioethics has served as a safety net for the rich and powerful, often failing to protect minorities and the economically disadvantaged. For example, minorities and the economically disadvantaged are often unduly influenced into participating in clinical trials that promise monetary gain or access to health care. This is a violation of the bioethical principle of “respect for persons,” which requires that informed consent for participation in clinical trials is voluntary and free of undue influence. Promises of access to (...) health care invalidate the voluntariness of informed consent not only because it unduly induces minorities and the economically disadvantaged to participate in clinical trials to obtain access to potentially life saving health care, but it is also manipulative because some times the clinical trial is conducted by the very institutions that are denying minorities and the economically disadvantaged access to health care. To measure whether consent is voluntary and free of undue influence, federal agencies should require researchers to use the Vulnerability and Equity Impact Assessment tool, which I have created based on the Health Equity Impact Assessment tool, to determine whether minorities and the economically disadvantaged are being unduly influenced into participating in clinical trials in violation of the “respect for persons” principle. (shrink)

The aim of this article was to critically analyse the concept of person-centred participation in healthcare from patients’ perspectives through a review of qualitative research findings. In accordance with the integrative review method of Broom, data were retrieved from databases, but 60 studies were finally included in the study. The diverse attributes of person-centred participation in healthcare were identified and contrasted with participation that was not person-centred and analysed through framework analysis. Person-centred participation in healthcare was (...) found to be based on patients’ experiences, values, preferences and needs in which respect and equality were central. It manifested itself via three intertwined phases: the human-connection phase, the phase of information processing and the action phase. The results challenge in many aspects earlier concept analyses of patient participation in addition to illuminating patient participation that is not positively valued by patients. (shrink)

Alongside fostering academic excellence in their students, many colleges and universities aspire to cultivate responsible citizens. In this article, I explore some challenges accompanying this task and offer my Ethics in Political Action course as one approach to support students’ development as ethically engaged citizens. I begin by outlining two obstacles which make pursuing this civic mission difficult, speaking both as a faculty member and Christian ethicist who works at the intersection of religion and politics. I then describe my Ethics (...) in Political Action course, which examines various forms of political participation so that students can explore ethical issues embedded in U.S. political life as well as critically reflect on their own political activity. By weaving together civic education with the questions and insights of the Christian ethical tradition, this course equips students with the political knowledge and skills they need to engage effectively and ethically in the U.S. today. (shrink)

IN THE PLATONIC TRADITION, the term "participation" signifies the fundamental relationship of both structure and dependence in the dialectic of the many in relation to the One and of the different in relation to the Identical, whereas in Christian philosophy it signifies the total dependence of the creature on its Creator. The term participation has played an extensive role in Patristic and medieval speculation.

Background Paediatric clinical research faces unique challenges that compromise optimal recruitment of children into clinical trials. A main barrier to enrolment of children is parental misconceptions about the research process. In developing countries, there is a knowledge gap regarding parental perceptions of and attitudes towards their children's participation in clinical trials. Objective To explore such perceptions and attitudes in Lebanese parents. Study design 33 in-depth interviews were conducted with parents with and without previous research experience. Interviews were tape-recorded, transcribed (...) in colloquial Arabic, and later subjected to thematic analysis. Results Benefit/risk ratio assessment was a major determinant of parental consent. Fear of adverse events or painful procedures in research was a recurring theme in most interviews. Whereas perception of direct benefit to the child, trust in the physician or institution, financial gains or having a positive previous experience in research facilitated consent, a complex informed consent form and misunderstanding of the term ‘randomisation’ hindered parental approval of participation. Conclusion Lebanese parents have perceptions of and attitudes towards children's participation in clinical trials that are similar to those reported from the industrialised world. Improving communication with parents and building trust between researchers and parents is important for successful recruitment. Investigators planning to conduct paediatric trials in developing countries need to simplify consent forms and devise new ways to explain randomisation. (shrink)

What does it take to see how autistic people participate in social interactions? And what does it take to support and invite more participation? Western medicine and cognitive science tend to think of autism mainly in terms of social and communicative deficits. But research shows that autistic people can interact with a skill and sophistication that are hard to see when starting from a deficit idea. Research also shows that not only autistic people, but also their non-autistic interaction partners (...) can have difficulties interacting with each other. To do justice to these findings, we need a different approach to autistic interactions—one that helps everyone see, invite, and support better participation. I introduce such an approach, based on the enactive theory of participatory sense-making and supported by insights from indigenous epistemologies. This approach helps counteract the homogenising tendencies of the “global mental health” movement, which attempts to erase rather than recognise difference, and often precludes respectful engagements. Based in the lived experiences of people in their socio-cultural-material and interactive contexts, I put forward an engaged—even engaging—epistemology for understanding how we interact across difference. From this perspective, we see participatory sense-making at work across the scientific, diagnostic, therapeutic, and everyday interactions of autistic and non-autistic people, and how everyone can invite and support more of it. (shrink)

Both the approach taken by World Rugby to address the question of trans women participation in women’s rugby and the paper by Jon Pike that explains the ethical justification for the exclusion of trans women players from world rugby are compelling when understood within the dominant rugby/sport narrative. However, in this article, I suggest that what is absent is a radical feminist understanding that engages with the political purposes of separate sport spaces for women in producing feminist counternarratives that (...) challenge men’s power in/over sport. Decisions about the inclusion of trans women in women’s sporting competitions should be made on a sport context-by-sport context basis oriented by broader feminist political goals. (shrink)

Enactive cognitive science combines questions in epistemology, ontology, and ethics by conceiving of bodies as open-ended and mutually transforming through activity. While enaction is not a theory of ethics, it can contribute to its foundations. We present a schematization of enactive ideas that underlie traditional distinctions between Being, Knowing, and Doing. Ethics in this scheme begins in the relation between knowing and becoming. Critical of dichotomous thinking, we approach the questions of alterity and ethical reality. Alterity is relevant to the (...) enactive approach, but not in the radical sense of transcendental arguments. We propose difference, instead, as a more generative concept. Following Simondon, we see norms and values manifest in webs of past and future acts together with their potentialities for becoming. We propose a transindividual concept of moral attunement that includes ethical know-how and consciousness raising. Through generative difference and attunement to configurations of becoming, enaction underpins an ethics of participation linking virtue ethics and ethics of care. (shrink)

Notwithstanding an ongoing concern about the low representation of certain groups in higher education, there is reluctance on the part of politicians and policy makers to adopt positive discrimination as an appropriate means of widening participation. This article offers an account of the different objections to positive discrimination and, thereafter, clarifies and criticises the view that universities ought to select those applicants who are expected to be most successful as students. It distinguishes arguments from meritocracy, desert, respect, and productivity (...) and shows how these arguments are compatible with the use of positive discrimination in higher education. (shrink)

Participation in victim-offender mediation can reduce the risk of reoffending. However, relatively little is known about how VOM affects the intermediate psychological changes underlying this effect. It was hypothesized that VOM increases feelings of responsibility, guilt, and shame among offenders as well as empathy toward the victim. It was also expected that VOM leads to feelings of moral failure among offenders, increasing their intention to desist, and improving their relation with the victim, relatives, and community. Lastly, it was hypothesized (...) that offenders may experience reduced rejection, concerns about condemnation, threat to their social moral identity, and victim blame following VOM. To this end, we compared psychological changes in offenders who participated in a VOM program in the Netherlands with those of offenders who were willing to but did not participate. A quasi-experimental, pre- and postmeasure research design was used to compare these groups. Our findings tentatively suggest that offenders who participate in VOM have more responsibility-taking and victim empathy, feel more guilt and shame, and experience higher moral failure than offenders who do not participate in VOM do. Offenders also reported feeling significantly less awkward about meeting the victim again after VOM. Future research should address how and to what degree these psychological changes translate into a lower risk of reoffending. (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)

Leisure time is a time frame which is not included in work and study, does not require any social responsibilities and can be used by a person's own will and voluntarily. An individual manages this time through various recreational activities with his own preference and tendencies. The teaching profession is a special service area. The aim of this study is to determine how teachers, who are affected by negative conditions such as stress, fatigue and monotony in business life, make use (...) of leisure time, and the effects of activities they participate on life happiness and job performance. For this purpose, 1604 teachers working in Karesi and Altıeylül districts in Balıkesir province constitute the target population of the study. According to the sample calculation (0.05 error margin), it has been found sufficient to conduct surveys with 310 teachers. A questionnaire has been applied to 450 teachers and 400 questionnaires have been evaluated. In the study, Recreation activities participation form has been used to collect data, the Oxford Happiness Questionnaire has been used to measure the happiness of the participants and the scale developed by LIT (Lamar Institute of Tecnology, 2009) has been used for performance.According to the findings of the study, it has been determined that the teachers are more interested in activities in the 'other activities' category such as video games, chess, watching television, surfing on the internet, board and card games, magazines and newspapers, attending club meetings, there is a weak positively relationship between recreation activities and happiness and happiness affects job performance. (shrink)

Design: Qualitative interview study. Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences. Findings: Interviewees gave a range of explanations for research participation. These were categorised as social—research participation benefits the wider society by progressing science and improving treatment for everyone; familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and personal—research (...) class='Hi'>participation provides therapeutic or non-therapeutic benefits for oneself. Conclusions: We discuss the distinction drawn between motives for research participation focused upon self and others, and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account. (shrink)

Garland, Morain, and Sugarman (2023) can be congratulated for their comprehensive and sharp analysis of physicians’ ethical duties with respect to pragmatic clinical trials (PCTs). PCTs embed resea...

Background There has been little attention paid to research on the outcomes of clinical ethics support or critical reflection on what constitutes a good CES outcome. Understanding how CES users perceive the importance of CES outcomes can contribute to a better understanding, use of and normative reflection on CES outcomes. Objective To describe the perceptions of Dutch healthcare professionals on important outcomes of moral case deliberation, prior to MCD participation, and to compare results between respondents. Methods This mixed-methods study (...) used both the Euro-MCD instrument and semi-structured interviews. Healthcare professionals who were about to implement MCD were recruited from nursing homes, hospitals, psychiatry and mentally disabled care institutions. Results 331 healthcare professionals completed the Euro-MCD instrument, 13 healthcare professionals were interviewed. The outcomes perceived as most important were ‘more open communication’, ‘better mutual understanding’, ‘concrete actions’, ‘see the situation from different perspectives’, ‘consensus on how to manage the situation’ and ‘find more courses of action’. Interviewees also perceived improving quality of care, professionalism and the organization as important. Women, nurses, managers and professionals in mentally disabled care rated outcomes more highly than other respondents. Conclusions Dutch healthcare professionals perceived the MCD outcomes related to collaboration as most important. The empirical findings can contribute to shared ownership of MCD and a more specific use of MCD in different contexts. They can inform international comparative research on different CES types and contribute to normative discussions concerning CES outcomes. Future studies should reflect upon important MCD outcomes after having experienced MCD. (shrink)

As social scientists with overlapping expertise in children and youth studies, inequalities, and medical sociology, we value the development of practical tools that medical professionals can utiliz...

Albert Dzur proposes an approach he calls "democratic professionalism" to build bridges between specialists in domains like law, medicine, and journalism and the lay public in such a way as to enable and enhance broader public engagement ...

Participation in further education is a central success factor for economic growth and societal as well as individual development. This is especially true today because in most industrialized countries, labor markets and work processes are changing rapidly. Data on further education, however, show that not everybody participates and that different social groups participate to different degrees. Activities in continuous vocational education and training are mainly differentiated as formal, non-formal and informal CVET, whereby further differences between offers of non-formal and (...) informal CVET are seldom elaborated. Furthermore, reasons for participation or non-participation are often neglected. In this study, we therefore analyze and compare predictors for participation in both forms of CVET, namely, non-formal and informal. To learn more about the reasons for participation, we focus on the individual perspective of employees and additionally integrate institutional characteristics. The results mainly show that non-formal CVET is still strongly influenced by institutional settings. In the case of informal CVET, on the other hand, the learning biography plays a central role. (shrink)