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)

It is Chantal Mouffe’s contention that the central weakness of consensus-driven forms of liberalism, such as John Rawls’ political liberalism and Jurgen Habermas’ deliberative democracy, is that they refuse to acknowledge conflict and pluralism, especially at the level of the ontological. Their defence for doing so is that conflict and pluralism are the result of attempts to incorporate unreasonable and irrational claims into the public political sphere. In this context, unreasonable and irrational claims are those that cannot be translated into (...) universalizable terms. However, for Mouffe, it is this intentional exclusionary act itself that is detrimental to a well- functioning democratic polity. It is only through the inclusion of a diverse body of subject positions that a democratic polity can be said to be truly representative of the polity, and therefore constitute a functioning and inclusive democracy. -/- This paper will examine Mouffe’s account of agonistic pluralism. In doing so, it will demonstrate that instead of being a source of instability within the democratic discourse and therefore relegated into the private non-political sphere, passions and values that are constitutive of these subject positions ought to be incorporated into the public political sphere. Mouffe’s rationale for doing so is that it is precisely through their incorporation that citizens will retain their allegiance to the democratic polity. However, as part of this examination, this paper will also draw attention to an under-developed aspect of Mouffe’s account of agonistic democracy, specifically problems regarding both participation and exclusion. Whilst Mouffe does provide a robust counterpoint to both Rawls’ political liberalism and Habermas’ deliberative democracy, it is my contention that she fails to explain adequately what it is that persuades participants to act democratically and adhere to the requirements of agonal respect, nor what should happen when the ethico- political principles of liberty and equality are not accepted. (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)

Voting Advice Applications (VAAs) are interactive online tools designed to assist voters by improving the basis on which they decide how to vote. In recent years, they have been widely adopted, but their design is the subject of ongoing and often heated criticism. Most of these debates focus on whether VAAs accurately measure the standpoints of political parties and the preferences of users and on whether they report valid results while avoiding political bias. It is generally assumed that if their (...) methodology is sound, then VAAs can be seen as strengthening the democratic process. But as we argue in this chapter, the setup of VAAs raises basic questions of normative democratic theory as well. Insofar as VAAs are supposed to improve the functioning of the democratic process, it must be clarified in what sense they aim to make a contribution, before it even makes sense to discuss their effectiveness at doing so. -/- VAAs are often intended to enhance the democratic process by one or all of the following: (I) informing voters about the policy standpoints of political parties (or individual candidates), (2) increasing voter turnout, and (3) ensuring that the composition of parliaments more accurately reflects the political attitudes of the electorate. In the next three sections, we discuss three central bones of contention in current democratic theory that are crucial to these ways in which VAAs typically take themselves to contribute to strengthening the democratic process: -/- 1. Questions about citizen competence: What forms of competence do citizens need to have, and to what extent, for a democracy to function properly? -/- 2. Questions about political participation: What forms and extent of participation are vital to democracy? -/- 3. Questions about democratic representation: How should the relation between the elected and the electorate be understood? -/- For each issue we aim to show, first, how the design and setup of mainstream VAAs are tacitly structured by a specific conception of the democratic aim at issue and, second, what some alternative positions on these questions are within contemporary political theory. In the final section, we will discuss some of the implications of this analysis for the responsibilities of VAA developers, and particularly for the procedural neutrality to which they are typically committed. Our conclusion will be that once these issues are identified, developers of VAAs should either argue in favour of their views on democratic competence, participation and representation, or they should rethink the design of VA As in ways that move beyond their current assumptions, or both. (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)

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)

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)

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 “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)

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)

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)

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)

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...

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)

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)

The emergence of the “4th Industrial Revolution,” i.e. the convergence of artificial intelligence, the Internet of Things, advanced materials, and bioengineering technologies, could accelerate socioeconomic insecurities and anxieties or provide beneficial alternatives to the status quo. In the post-Covid-19 era, the entities that are best positioned to capitalize on these innovations are large firms, which use digital platforms and big data to orchestrate vast ecosystems of users and extract market share across industry sectors. Nonetheless, these technologies also have the potential (...) to democratize ownership, broaden political-economic participation, and reduce environmental harms. We articulate the potential sociotechnical pathways in this high-stakes crossroads by analyzing cellular agriculture, an exemplary 4th Industrial Revolution technology that synergizes computer science, biopharma, tissue engineering, and food science to grow cultured meat, dairy, and egg products from cultured cells and/or genetically modified yeast. Our exploration of this space involved multi-sited ethnographic research in both the cellular agriculture community and alternative economic organizations devoted to open source licensing, member-owned cooperatives, social financing, and platform business models. Upon discussing how these latter approaches could potentially facilitate alternative sociotechnical pathways in cellular agriculture, we reflect upon the broader implications of this work with respect to the 4th Industrial Revolution and the enduring need for public policy reform. (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)

The inclusion of girls and women in sport at all levels depends on single sex categories for most sports from puberty onwards, because of the biological differences between the sexes. Most sport is, by definition, competitive; involving invasion games, teams, leagues, races, competitions and sometimes rankings, from foundation to excellence. Girls and women are underrepresented, particularly in traditional sport, as recognised by the UK Sports Councils and most governing bodies of sport. This paper uses feminist philosophy: Lister on androcentric citizenship, (...) and Fraser on justice as balance, framing, recognition, representation and redistribution. It investigates the impact on the inclusion of girls and women, of eligibility policies adopting ‘self-identification of gender’ guidelines for the inclusion of transgender people in sport, at participation rather than elite levels. It explores fairness and equality as incorporated in law in the 2010 Equality Act in Britain, and contributes to ‘equality evidence’ available to the UK Sports Councils and GBS. These bodies are charged with developing fair and inclusive evidence-based eligibility criteria, in sports participation settings, for both girls and women, and transgender people. (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)

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 ...

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)

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)

Understanding the relationship between wilderness outings and the resulting experience has been a central theme in resource-based, outdoor recreation research for nearly 50 years. The authors provide a review and synthesis of literature that examines how people, over time, build relationships with wilderness places and express their identities as consequences of multiple, ongoing wilderness engagements (i.e., continued participation). The paper reviews studies of everyday places and those specifically protected for wilderness and backcountry qualities. Beginning with early origins and working (...) through contemporary research the authors synthesize what diverse social scientists have learned about the long-term and continual nature of wilderness participation and its impact on the formation of identity. The thrust of the paper points researchers, planners, and managers in non-traditional directions and reframes goals and objectives for visitor planning and management in wilderness and other protected areas. (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)

Over the past few years, a growing number of people have called for reconceptualizing participation in health research as a moral obligation. John Harris argues that seriously debilitating diseases give rise to important needs, and since medical research is necessary to relieve those needs in many circumstances, people are morally obligated to act as research subjects.1 Rosamond Rhodes claims that research participation is a moral obligation for reasons of justice, beneficence, and self-development: because we all benefit significantly from (...) modern medicine, we are all required to do our part in advancing the state of medical knowledge.2 Individuals who reap the benefits of medical knowledge without contributing .. (shrink)

An investigation into two basic concepts of ancient pagan and early Christian thought, activity and participation, through detailed discussion of the writings of Gregory of Nyssa, Dionysius the Areopagite, Maximus the Confessor, and Gregory Palamas.

A high level of citizen involvement in civic life is presumed crucial to the well-being of democracy, but the actual discourse of citizen involvement has rarely been analyzed. This article analyzes citizen participation in the school board meetings of one US community that was in the midst of conflict. After providing background on education governance practices and the community that was studied, citizen participation is examined. Citizen commentaries at school board meetings are shown to be a distinct speech (...) genre and the genre is described. Then, we characterize the discourse practices used to express negative sentiment. Feeling-limned description, avowal of feelings, rhetorical questions, reported speech, use of god and devil terms, and using meeting rules as weapons were the main negative sentiment strategies. In the conclusion we suggest when low levels of citizen involvement should be acceptable, and why `reasonable hostility' is a desirable form of citizen expression. (shrink)