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)

Some are concerned about the possibility that offering money for research participation can constitute coercion or undue influence capable of distorting the judgment of potential research subjects and compromising the voluntariness of their informed consent. The author recognizes that more often than not there are multiple influences leading to decisions, including decisions about research participation. The concept of undue influence is explored, as well as the question of whether or not there is something uniquely distorting about money as (...) opposed to a chance for treatment or medical care. An amount of money that is not excessive and is calculated on the basis of time or contribution may, rather than constitute an undue inducement, be an indication of respect for the time and contribution that research subjects make. (shrink)

In a recent Target Article Naomi Scheinerman (2023a) has offered an important and compelling call to institutionalize popular participation for heritable genome engineering through the inclusion of...

A pervasive feature of democracy is disagreement. And in general, when we encounter disagreement from someone who is at least more reliable than chance, this puts some pressure on us to moderate our beliefs. But this raises the specter of asymmetric compliance—it’s not obvious what to do when we moderate our beliefs but the other party refuses to do so. Whereas an elegant solution is available when it comes to how we can to respond to our higher-order evidence while still (...) preserving democratic fairness, I argue that no such solution is forthcoming when we consider zetetic intransigence—that is, asymmetric compliance with regards to how we inquire, or gather evidence. The upshot is that democratic participation can involve messy tradeoffs with no entirely satisfactory resolution. (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)

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)

Cette étude fournit une analyse comparative des politiques liées à la position des personnes handicapées sur le marché du travail en Finlande et en Italie, deux pays où l’écart d’emploi entre les personnes handicapées et non handicapées est relativement faible. Cette étude examine les politiques visant à améliorer la position des personnes handicapées sur le marché du travail et se base sur la littérature existante et des entretiens avec des experts. L’analyse comparative montre que ces deux pays emploient des approches (...) politiques différentes. En Finlande, les compensations sont relativement élevées et les politiques mettent l’accent sur la prévention. Cependant, les mesures d’activation pour les bénéficiaires de compensations d’invalidité font défaut. En Italie, les politiques se concentrent sur l’activation. La loi italienne sur les quotas oblige les entreprises à embaucher des personnes handicapées. En outre, les coopératives sociales offrent des emplois aux personnes handicapées. Les résultats suggèrent que les efforts visant à garantir des mesures de compensation et d’activation adéquates, combinés à des processus créés pour construire une société inclusive, peuvent contribuer à améliorer la situation du marché du travail pour les personnes handicapées. (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)

Formalised public participation in project approval procedures is rarely addressed in technology assessment. Empirical data about public participation processes are taken into account even more rarely. This article explores the practice of public participation in infrastructure projects in the Federal Republic of Germany on the basis of empirical data from the period of 1990 to 2010. The author compares the empirical data about participation processes with the targets of the public participation and asks for the (...) reasons for the lack of participation in formalised approval procedures. Furthermore, the author contrasts participation formats used in technology assessment with formalised public participation. In his conclusions, he advocates for a stronger combination of formalised and informal public participation in technology assessment. (shrink)

BackgroundAn increasing number of studies utilize intracranial electrophysiology in human subjects to advance basic neuroscience knowledge. However, the use of neurosurgical patients as human research subjects raises important ethical considerations, particularly regarding informed consent and undue influence, as well as subjects’ motivations for participation. Yet a thorough empirical examination of these issues in a participant population has been lacking. The present study therefore aimed to empirically investigate ethical concerns regarding informed consent and voluntariness in Parkinson’s disease patients undergoing deep (...) brain stimulator (DBS) placement who participated in an intraoperative neuroscience study.MethodsTwo semi-structured 30-minute interviews were conducted preoperatively and postoperatively via telephone. Interviews assessed participants’ motivations for participation in the parent intraoperative study, recall of information presented during the informed consent process, and participants’ postoperative reflections on the research study.ResultsTwenty-two participants (mean age = 60.9) completed preoperative interviews at a mean of 7.8 days following informed consent and a mean of 5.2 days prior to DBS surgery. Twenty participants completed postoperative interviews at a mean of 5 weeks following surgery. All participants cited altruism or advancing medical science as “very important” or “important” in their decision to participate in the study. Only 22.7% (n = 5) correctly recalled one of the two risks of the study. Correct recall of other aspects of the informed consent was poor (36.4% for study purpose; 50.0% for study protocol; 36.4% for study benefits). All correctly understood that the study would not confer a direct therapeutic benefit to them.ConclusionEven though research coordinators were properly trained and the informed consent was administered according to protocol, participants demonstrated poor retention of study information. While intraoperative studies that aim to advance neuroscience knowledge represent a unique opportunity to gain fundamental scientific knowledge, improved standards for the informed consent process can help facilitate their ethical implementation. (shrink)

Purpose: Discuss the relationship among college students’ media internalized pressure, social physique anxiety, weight control self-efficacy, and sports participation in providing a reference for promoting college students to develop healthy and confident living habits.Methods: Take Southwest University in China as the object, select the subjects by stratified random sampling, and process the data with SPSS19.0 and AMOS21.0 statistical software.Results: Media internalized pressure is positively correlated with social physique anxiety, weight control self-efficacy, and sports participation; social physique anxiety is (...) significantly positively correlated with weight control self-efficacy and sports participation, and weight control self-efficacy is significantly positively correlated with sports participation; media internalized pressure has a direct effect on sports participation, and social physique anxiety and weight control self-efficacy play significant mediating roles in the relationship between media internalized pressure and sports participation, respectively; the chained mediating force of social physique anxiety and weight control self-efficacy also reaches a significant level.Conclusion: Media internalized pressure can influence college students’ sports participation through the direct path as well as indirect paths such as social physique anxiety, the intermediary effect of weight control self-efficacy, and chained intermediary effect of social physique anxiety–weight control self-efficacy, and social physique anxiety is another key factor affecting college students’ sports participation except media internalized pressure. (shrink)

Abstract:This paper investigates whether, in theoretical terms, corporations can be citizens. The argument is based on the observation that the debate on “corporate citizenship” (CC) has only paid limited attention to the actual notion of citizenship. Where it has been discussed, authors have either largely left the concept of CC unquestioned, or applied rather unidimensional and decontextualized notions of citizenship to the corporate sphere. The paper opens with a critical discussion of a major contribution to the CC literature, the work (...) of Logsdon and Wood (Wood and Logsdon 2001; Logsdon and Wood 2002). It continues with a consideration of the nature and role of metaphors for business and of the contestable nature of the political concept of citizenship. It evaluates corporations as citizens through a four-dimensional framework of democratic citizenship offered by Stokes (2002). The analysis suggests that corporations do not easily fit the “liberal minimalist” model of citizenship. It finds, however some possibilities for fit with the three more participatory models. The paper concludes by cautioning against basing corporate citizenship on legal and administrative status or identity, and mapping out specific criteria by which we might determine whether corporations could be considered as citizens by virtue of their participation in processes of governance. (shrink)

In this essay, I address some questions and challenges brought about by Thomas Christiano in his inspiring review of my book Democracy without Shortcuts. First, I defend the democratic credentials of the conception of self-government that I articulate in the book against conceptions of self-determination that are allegedly compatible with non-democratic government. To do so, I clarify some aspects of the notion of “blind deference” that I use in the book as a contrast concept to identify a minimal, necessary condition (...) for democratic self-government. In a second step, I clarify my criticism of deep pluralist conceptions of democracy and argue that Christiano’s own criticism does not seem to address the main challenge to which pure proceduralism is supposed to provide an answer. Lastly, I address Christiano’s contention that my criticism of lottocracy does not address the worries that lottocrats are responding to. I distinguish between populist and epistocratic worries and argue that both of them have anti-democratic roots and thus should be criticized rather than “responded to” in their own terms. (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)

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)

This study explores the development of the interactional competence of an 8-year-old, Japanese learner of English over three cooking sessions with native speakers of English at her home during her period of residence in Australia. The study draws upon Vygotsky’s zone of proximal development in order to elucidate the L2 child’s process of acquiring interactional competence in this unfamiliar social practice. The analysis reveals marked changes in the child’s participation pattern over time, moving from making relevant minimal responses to (...) more initiated, and autonomous participation. The child recycled some of the interlocutors’ utterances from the previous sessions, showing that the earlier cooking sessions provided her with a linguistic challenge and became a resource of language learning for her. She also made use of a textual resource as a scaffold to move toward more autonomous participation. In addition, the role of the recipe became less central as her participation became increasingly more independent. (shrink)

This article shows how activists in the open data movement re-articulate notions of democracy, participation, and journalism by applying practices and values from open source culture to the creation and use of data. Focusing on the Open Knowledge Foundation Germany and drawing from a combination of interviews and content analysis, it argues that this process leads activists to develop new rationalities around datafication that can support the agency of datafied publics. Three modulations of open source are identified: First, by (...) regarding data as a prerequisite for generating knowledge, activists transform the sharing of source code to include the sharing of raw data. Sharing raw data should break the interpretative monopoly of governments and would allow people to make their own interpretation of data about public issues. Second, activists connect this idea to an open and flexible form of representative democracy by applying the open source model of participation to political participation. Third, activists acknowledge that intermediaries are necessary to make raw data accessible to the public. This leads them to an interest in transforming journalism to become an intermediary in this sense. At the same time, they try to act as intermediaries themselves and develop civic technologies to put their ideas into practice. The article concludes with suggesting that the practices and ideas of open data activists are relevant because they illustrate the connection between datafication and open source culture and help to understand how datafication might support the agency of publics and actors outside big government and big business. (shrink)

As behavioural economics reveals, human decision-making deviates from neoclassical assumptions about human behaviour and people (often) fail to make the ‘right’ welfare-enhancing choice. The purpose of Sunstein and Thaler’s concept of ‘nudge’ is to improve individual welfare. To provide normative justification, they argue that the only relevant normative criterion is whether the individual is ‘better off as judged by themselves’, so that the direction in which people are to be nudged is defined by their own preferences. In light of behavioural (...) findings, however, people’s choices do not provide a sound basis for eliciting preferences and thus for assessing welfare. In this paper, I aim to challenge Sunstein and Thaler’s normative view, arguing that it is unreasonable to rely on conventional welfare economics, particularly considering the given context. Sunstein and Thaler depend on an approach of ‘preference purification’ which assumes informed, latent, and true preferences: As a result they face crucial methodological, epistemological, and practical objections, and cannot show how their approach enhances individual welfare. By building on the concepts of R. Sugden and C. Schubert, I develop an alternative normative framework for behavioural public policy, based on a contractualist perspective in which people may consent to collective choice rules in order to align future behaviour with values, to achieve particular goals or to preserve personal integrity. Individual consent and citizens’ participation and deliberation are crucial to this approach. This contractualist approach may provide a normative justification for behavioural public policy, and help to reconcile behavioural and normative economics. (shrink)

Why and how have lay people participated in scientific observation? And on what terms have they collaborated with experts and professionals? We have become accustomed to the involvement of lay observers in the practice of many branches of science, including both the natural and human sciences, usually as subordinates to experts. The current surge of interest in this phenomenon, as well as in the closely related topic of how expertise has been constructed, suggests that historians of science can offer a (...) valuable contribution to these vital questions. A historical approach to lay participation allows us to better understand the making of expert-lay relations in science, and it offers a broader, long-term perspective on contemporary debates about that boundary. (shrink)

In this paper I argue for recognizing the moral duty to participate in research. I base my argument on the need for biomedical research and the fact that at some point studies require human participants, what I call collaborative necessity. In presenting my position, I argue against the widely accepted views of Han Jonas and all of those who have accepted his declarations without challenge. I go on to show why it is both just and fair to invite and encourage (...) people to participate in studies. It is just because research participation is the necessary means to achieve the broadly shared goals of preventing and curing disease and alleviating disease symptoms. Mutual love requires us to be willing to do for others what we would want them to do for us. It is fair because the approach treats similarly situated people in the same way. Research participation is morally required because failing to do one's part in the collaborative project of advancing biomedical science would be free-riding. People who exempt themselves from participation while eagerly accepting benefits from others doing their part are taking advantage of their compatriots and treating themselves as more deserving than others when they are not. (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...

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)

This study via the sensemaking perspective examines whether spiritual leadership can influence employee workplace spirituality and employee corporate social responsibility (CSR) participation. We also examine the joint effects of spiritual leadership and employee Machiavellianism on employee workplace spirituality. Using a sample of 556 employees from four commercial banks in China, analyses demonstrate that employee workplace spirituality mediates the relationship between spiritual leadership and employee CSR participation and that the indirect effect of spiritual leadership on employee CSR participation (...) is dependent on the level of employee Machiavellianism. These results shed light on how and why spiritual leadership and employee Machiavellianism influence employee workplace spirituality and employee CSR participation. The theoretical and practical implications of these finding are discussed along with directions for future research. (shrink)

The participation of physicians in the atrocities of the Holocaust exposed vulnerabilities in medicine’s moral commitment to patients’ best interests that every health professional should recognize. Teaching about this history is challenging, as it is extremely complex and there are no common standards for what basic historical facts students in health professions training programs should learn. Nor is there guidance on how these historical facts can or should be related to contemporary ethical issues facing health professionals. To address these (...) problems, we propose a set of core historical facts about health professional involvement in the Holocaust that every student in a health professional training program should learn. We then identify three ethical lessons from the Holocaust that are pertinent today as physicians struggle to maintain their moral compass and earn the trust of patients and the public: 1) The lesson of commitment to science; maintaining balance between reason and skepticism in the search for truth, The lesson of clinical detachment; maintaining balance between necessary professional distance with a commitment to humanism and intimacy with patients, and 3) The lesson of competing loyalties; maintaining balance in upholding medicine’s multiple responsibilities, including to individual patients and the larger community. Embedding these facts and lessons into the education of health professionals is challenging yet critically important. Today’s physicians struggle with some of the same ethical tensions as did German physicians in the Nazi era, albeit in a much-attenuated fashion. Awareness of these tensions and taking active measures to maintain them in balance are necessary components of humanistic health care, which should be an integral part of health professional training programs. (shrink)

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)

School enterprise cooperation, as the basic school running form of applied undergraduate education, is an important way to cultivate applied talents. However, at present, the lack of motivation for enterprises to participate in school enterprise cooperation and the resulting problem of “school hot and enterprise cold” seriously limit the talent training quality in China’s application-oriented universities. There is an urgent need to explore the influencing factors and mechanisms of enterprises’ participation in school enterprise cooperation to improve the training quality (...) of applied talents. Taking Ajzen Theory of Planned Behavior as the theoretical framework, this study constructs the influencing factor model of enterprise participation in school enterprise cooperation from four aspects, namely, behavior attitude, subjective norms, perceived behavior control, and behavior intention. In this study, participants completed a questionnaire assessing their participation in school enterprise cooperation, which was analyzed by a structural equation model. The results show that the behavior attitude and perceived behavior control of enterprises have a significant positive impact on their intention to participate in school enterprise cooperation and then have a significant positive impact on the school enterprise cooperation behavior of enterprises. The behavior intention and perceived behavior control of enterprises have a significant positive impact on their participation in school enterprise cooperation. The policy environment has a significant regulatory effect on the relationship between the intention and behavior of enterprises’ participation in school enterprise cooperation. Therefore, from the perspective of enhancing the intention of enterprises to cooperate, colleges and universities should establish the awareness of win-win cooperation and meet the interest demands of enterprises in school enterprise cooperation in order to improve the behavior attitude and intention of enterprises. From the perspective of the formation conditions of school enterprise cooperation, with the help of industry associations, an information service platform for school enterprise cooperation should be built in order to eliminate the information islands between enterprises and universities. From the perspective of the needs of school enterprise cooperation environment, government departments should strengthen the policy support for school enterprise cooperation in order to eliminate the worries of enterprises’ participation in school enterprise cooperation. (shrink)