BackgroundLimited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa.MethodsSemi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that (...) worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed.ResultsThirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking.ConclusionParticipant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected. (shrink)

In this book, David B. Wong defends an ambitious and important new version of moral relativism. He does not espouse the type of relativism that says anything goes, but he does start with a relativist stance against alternative theories such that there need not be only one universal truth. Wong proposes that there can be a plurality of true moralities existing across different traditions and cultures, all with one core human question as to how we can all live (...) together. (shrink)

The rise of global populism reveals a tension in Western thinking about democracy. Warnings about the "populist threat" to democracy and "authoritarian" populism are now commonplace. However, as Emily B. Finley argues in The Ideology of Democratism, dismissing "populist" as anti-democratic is highly problematic. In effect, such arguments essentially reject the actual popular will in favor of a purely theoretical and abstract "will of the people." She contends that the West has conceptualized democracy--not just its populist doppelgänger--as an ideal (...) that has all of the features of a thoroughgoing political ideology which she labels "democratism." As she shows, this understanding of democracy, which constitutes an entire view of life and politics, has been and remains a powerful influence in America and leading Western European nations. Through a careful analysis of several of history's most vocal champions of democracy, including Jean-Jacques Rousseau, Thomas Jefferson, Woodrow Wilson, John Rawls, and both American neoconservatives and liberal internationalists, Finley identifies an interpretation of democracy that effectively transforms the meaning of "rule by the people" into nearly its opposite. Making use of democratic language and claiming to speak for the people, many politicians, philosophers, academics, and others advocate a more "complete" and "genuine" form of democracy that in practice has little regard for the actual popular will.A heterodox argument that challenges the prevailing consensus of what democracy is and what it is supposed to be, The Ideology of Democratism offers a timely and comprehensive assessment of the features and thrust of this powerful new view of democracy that has enchanted the West. -- Dust jacket. (shrink)

In 2015, the major critical care societies issued guidelines outlining a procedural approach to resolving intractable conflict between healthcare professionals and surrogates over life-sustaining treatments (LST). We report our experience with a resolving conflict procedure. This was a retrospective, single-centre cohort study of ethics consultations involving intractable conflict over LST. The resolving conflict process was initiated eleven times for ten patients over 2,015 ethics consultations from 2000 to 2020. In all cases, the ethics committee recommended withdrawal of the contested LST. (...) In seven cases, the patient died or was transferred or a legal injunction was obtained before completion of the process. In the four cases in which LST was withdrawn, the time from ethics consultation to withdrawal of LST was 24.8 ± 12.2 days. Healthcare provider and surrogate were often distressed during the process, sometimes resulting in escalation of conflict and legal action. In some cases, however, surrogates appeared relieved that they did not have to make the final decision regarding LST. Challenges regarding implementation included the time needed for process completion and limited usefulness in emergent situations. Although it is feasible to implement a due process approach to conflict over LST, there are factors that limit the procedure’s usefulness. (shrink)

This article offers a comprehensive review of the major theoretical issues and findings of the epistemic approaches to deliberative democracy. Section 2 surveys the norms and ideals of deliberative democracy in relation to deliberation's ability to “track the truth.” Section 3 examines the conditions under which deliberative mini‐publics can “track the truth.” Section 4 discusses how “truth‐tracking” deliberative democracy is possible through the division of epistemic labor in a deliberative system.

Several prominent voices have called for a democratization of science through deliberative processes that include a diverse range of perspectives and values. We bring these scholars into conversation with extant research on democratic deliberation in political theory and the social sciences. In doing so, we identify systematic barriers to the effectiveness of inclusive deliberation in both scientific and political settings. We are particularly interested in what we call misidentified dissent, where deliberations are starkly framed at the outset in terms of (...) dissenting positions without properly distinguishing the kinds of difference and disagreement motivating dissent. (shrink)

When we hear about a transgression, we may consider whether the perpetrator’s individual circumstances make their transgression more understandable or excusable. Mitigating circumstances may reduce the severity of punishment that is deemed appropriate, both intuitively and legally. But importantly, in courts of public opinion and of law, mitigating information is typically presented only after information about a perpetrator’s transgression. We explore whether this sequence influences the force of mitigating evidence. Specifically, in two studies, we examined whether presenting evidence about a (...) perpetrator’s background before or after evidence of their violation influenced how severely U.S. participants punished perpetrators. In Study 1 (N = 132), evidence about the perpetrator’s mitigating circumstances reduced punishment only when it was presented before evidence about the perpetrator’s violation. Study 2 (N = 316) additionally revealed this moderating effect of presentation order across a variety of premeditated and impulsive violations. These findings are consistent with person-centered theories of punishment and with the Story Model of adjudication. (shrink)

Wisdom is a multi-component trait that is important for mental health and well-being. In this study, we sought to understand gender differences in relative strengths in wisdom. A total of 659 individuals aged 27–103 years completed surveys including the 3-Dimensional Wisdom Scale and the San Diego Wisdom Scale. Analyses assessed gender differences in wisdom and gender’s moderating effect on the relationship between wisdom and associated constructs including depression, loneliness, well-being, optimism, and resilience. Women scored higher on average on the 3D-WS (...) but not on the SD-WISE. Women scored higher on compassion-related domains and on SD-WISE Self-Reflection. Men scored higher on cognitive-related domains and on SD-WISE Emotion Regulation. There was no impact of gender on the relationships between wisdom and associated constructs. Women and men have different relative strengths in wisdom, likely driven by sociocultural and biological factors. Tailoring wisdom interventions to individuals based on their profiles is an important next step. (shrink)

Palliative care and medical-legal partnership are complementary disciplines dedicated to integrating care to treat the whole patient and intervening before a legal or medical issue is at a crisis point. In this paper, we discuss the founding and operations of the Yale Palliative Medical Legal Partnership, give examples of typical cases, explain special considerations in this area of law, and propose areas for further research.

Festschriften, when they are haphazard collections of pieces written by colleagues and well-wishers on the occasion of a major anniversary in the life of a distinguished man, tend to be tedious. One can more profitably go directly to the writings of the celebrant, as well as other, more voluntary publications of his well-wishers. However, the editors wish to claim that this Festschrift is different. This is so first of all because of the almost unique combination of interests and competence of (...) Henry Margenau. He is at once a distinguished physicist, an equally distinguished educator, and a prominent philosopher. These broad areas of his extraordinarily active and fruitful career are each represented in this volume in his honor, and this constitutes the particular interest of the collection. Without limiting themselves to paraphrases or empty compliments, the contributors to this book range over the scope of interest of Margenau's work, and, acknowledging its influence and significance, present their own viewpoints and conclusions. Since they include some of the most distinguished men in science and philosophy today, the privilege of having them speak to some broadly defined common concerns in a single volume is a rare one, for which our thanks must go to Henry Margenau, who inspired the papers. (shrink)

ICAP is a theory of active learning that differentiates students’ engagement based on their behaviors. ICAP postulates that Interactive engagement, demonstrated by co‐generative collaborative behaviors, is superior for learning to Constructive engagement, indicated by generative behaviors. Both kinds of engagement exceed the benefits of Active or Passive engagement, marked by manipulative and attentive behaviors, respectively. This paper discusses a 5‐year project that attempted to translate ICAP into a theory of instruction using five successive measures: (a) teachers’ understanding of ICAP after (...) completing an online module, (b) their success at designing lesson plans using different ICAP modes, (c) fidelity of teachers’ classroom implementation, (d) modes of students’ enacted behaviors, and (e) students’ learning outcomes. Although teachers had minimal success in designing Constructive and Interactive activities, students nevertheless learned significantly more in the context of Constructive than Active activities. We discuss reasons for teachers’ overall difficulty in designing and eliciting Interactive engagement. (shrink)

Public health and service delivery programmes, interventions and policies are typically developed and implemented for the primary purpose of effecting change rather than generating knowledge. Nonetheless, evaluations of these programmes may produce valuable learning that helps determine effectiveness and costs as well as informing design and implementation of future programmes. Such studies might be termed ‘opportunistic evaluations’, since they are responsive to emergent opportunities rather than being studies of interventions that are initiated or designed by researchers. However, current ethical guidance (...) and registration procedures make little allowance for scenarios where researchers have played no role in the development or implementation of a programme, but nevertheless plan to conduct a prospective evaluation. We explore the limitations of the guidance and procedures with respect to opportunistic evaluations, providing a number of examples. We propose that one key missing distinction in current guidance is moral responsibility: researchers can only be held accountable for those aspects of a study over which they have control. We argue that requiring researchers to justify an intervention, programme or policy that would occur regardless of their involvement prevents or hinders research in the public interest without providing any further protections to research participants. We recommend that trial consent and ethics procedures allow for a clear separation of responsibilities for the intervention and the evaluation. (shrink)

In this issue of American Journal of Bioethics, Childress et al. address one of the most challenging modern clinical ethical dilemmas: the awake, competent patient dependent on extracorporeal membr...

The Occupy Wall Street movement of 2011 and its corollaries, Occupy Sandy and Occupy Debt, have been largely understood as secular movements. In spite of this, religious actors not only participated, but in some cases played an integral role within the movement, lending material support, organizing expertise, and public statements of support. We rely on interviews with faith leaders in New York and Oakland, and engage in an analysis of print and online media to explore the role of religious actors (...) and groups in Occupy Wall Street. Religious participants were often long-time veterans of progressive political struggles and drew inspiration from their faith traditions. Nonetheless, religious commitments were secondary to political objectives shared by themselves and their secular counterparts. Religious leaders believed they offered symbolic authority to the movement and highlighted this in their engagement in the hope of giving it greater moral weight. Current discussions on postsecularism and public religions are considered. (shrink)

The view defended is one sense externalist on the relation between moral reasons and motivation: A's having a moral reason to do X does not necessarily imply that A has a motivation that would support A's doing X via some appropriate deliberative route. However, it is in another sense externalist in holding that there are the kind of moral reasons there are only if the relevant motivational capacities are "generally present" in human beings, if not in all individuals. The process (...) of socialization is an attempt to embed the recognition of what we have moral reason to do in the intentional content of one's feelings. E.g., learning that about others' suffering embeds their suffering as a reason to help in the intentional content of incipient compassionate feelings. This endows the reason with motivational efficacy while conferring further direction to the feelings in ways that shape us for social cooperation. (shrink)

David B. Wong proposes that there can be a plurality of true moralities, moralities that exist across different traditions and cultures, all of which address facets of the same problem: how we are to live well together. Wong examines a wide array of positions and texts within the Western canon as well as in Chinese philosophy, and draws on philosophy, psychology, evolutionary theory, history, and literature, to make a case for the importance of pluralism in moral life, and (...) to establish the virtues of acceptance and accommodation. Wong's point is that there is no single value or principle or ordering of values and principles that offers a uniquely true path for human living, but variations according to different contexts that carry within them a common core of human values. We should thus be modest about our own morality, learn from other approaches, and accommodate different practices in our pluralistic society. (shrink)

This title is part of UC Press's Voices Revived program, which commemorates University of California Press’s mission to seek out and cultivate the brightest minds and give them voice, reach, and impact. Drawing on a backlist dating to 1893, Voices Revived makes high-quality, peer-reviewed scholarship accessible once again using print-on-demand technology. This title was originally published in 1984.

Abstract:Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how (...) relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices. (shrink)

The last decade has witnessed renewed attempts to regulate the conduct of transnational corporations. One way to do this is via global ethics codes. This paper examines seven such codes (the Sullivan Principles, UN Center for Transnational Corporations’ Draft Code, OECD Guidelines, ILO's Tripartite Declaration, the Caux Round Table Principles for Business, Global Compact, and the United Nations Norms) to determine their coverage of human rights and concludes that if these initiatives succeed, particularly the more recent codes, transnational corporations may (...) emerge as a major force in promoting human rights globally. (shrink)

This essay explains the inescapability of moral demands. I deny that the individual has genuine reason to comply with these demands only if she has desires that would be served by doing so. Rather, the learning of moral reasons helps to shape and channel self- and other-interested motivations so as to facilitate and promote social cooperation. This shaping happens through the “embedding” of reasons in the intentional objects of motivational propensities. The dominance of the instrumental conception of reason, according to (...) which reasons must be based in desires of the individual, has made it harder to recognize that reasons shape desires. I attempt to undermine this dominance by arguing that the concept of a self that extends over time is constructed to meet the demands of social cooperation. Prudential reasons to act on behalf of the persisting self's desires are often taken to constitute the paradigm of reasons based on desires of the individual. But such reasons, along with the very concept of the persisting self, are constructed to promote human cooperation and to shape the individual's desires. (shrink)

After a 50-page outline of the principles of clinical reasoning, over 60 actual cases are detailed that illustrate (and are keyed to) the principles, presenting case records, analysis, and references to literature. For medical students and interns, and their instructors. Annotation copyright Book Ne.

The Chinese ethical tradition has often been thought to oppose Western views of the self as autonomous and possessed of individual rights with views that emphasize the centrality of relationship and community to the self. The essays in this collection discuss the validity of that contrast as it concerns Confucianism, the single most influential Chinese school of thought. Alasdair MacIntyre, the single most influential philosopher to articulate the need for dialogue across traditions, contributes a concluding essay of commentary. This is (...) the only consistently philosophical collection on Asia and human rights and could be used in courses on comparative ethics, political philosophy and Asian area studies. (shrink)

Metaphors of adorning, crafting, water flowing downward, and growing sprouts appear in the Analects , the Mencius , and the Xunzi 荀子. They express and guide thinking about what there is in human nature to cultivate and how it is to be cultivated. The craft metaphor seems to imply that our nature is of the sort that must be disciplined and reshaped to achieve goodness, while the adorning, water, and sprout metaphors imply that human nature has an inbuilt directionality toward (...) the ethical that should be protected or nurtured. I argue that all the metaphors capture different aspects of human nature and how one must work with these aspects. There is much in contemporary psychology and neuroscience to suggest that the early Confucians were on the right track. It is also argued that they point to a fruitful conception of ethical development that is relational and holistic. (shrink)