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)

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.

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)

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)

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)

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)

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)

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...

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)

California has focused on health equity in the state’s COVID-19 reopening plan. The Blueprint for a Safer Economy assigns each of California’s 58 counties into 1 of 4 tiers based on 2 metrics: test positivity rate and adjusted case rate. To advance to the next less-restrictive tier, counties must meet that tier’s test positivity and adjusted case rate thresholds. In addition, counties must have a plan for targeted investments within disadvantaged communities, and counties with more than 106 000 residents must (...) meet an equity metric. California's explicit incorporation of health equity into its reopening plan underscores the interrelated fate of its residents during the COVID-19 pandemic and creates incentives for action. This article evaluates the benefits and challenges of this novel health equity focus, and outlines recommendations for other US states to address disparities in their reopening plans. (shrink)

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases' powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on (...) humans by foreign micro-organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical-ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community. (shrink)

This paper examines the characteristics of infectious diseases that raise special medical and social ethical issues, and explores ways of integrating both current bioethical and classical public health ethics concerns. Many of the ethical issues raised by infectious diseases are related to these diseases’ powerful ability to engender fear in individuals and panic in populations. We address the association of some infectious diseases with high morbidity and mortality rates, the sense that infectious diseases are caused by invasion or attack on (...) humans by foreign micro‐organisms, the acute onset and rapid course of many infectious diseases, and, in particular, the communicability of infectious diseases. The individual fear and community panic associated with infectious diseases often leads to rapid, emotionally driven decision making about public health policies needed to protect the community that may be in conflict with current bioethical principles regarding the care of individual patients. The discussion includes recent examples where dialogue between public health practitioners and medical‐ethicists has helped resolve ethical issues that require us to consider the infected patient as both a victim with individual needs and rights and as a potential vector of disease that is of concern to the community. (shrink)

Fertility preservation has become more common for various populations, including oncology patients, transgender individuals, and women who are concerned about age-related infertility. Little attention has been paid to fertility preservation for patients with differences/disorders of sex development (DSD). Our goal in this article is to address specific ethical considerations that are unique to this patient population. To this end, we present a hypothetical DSD case. We then explore ethical considerations related to patient’s age, risk of cancer, concern about genetic transmission (...) of a DSD condition to children, co-occurring gender dysphoria, and access to experimental fertility preservation procedures. Given the limitations of current technologies, we recommend offering fertility preservation to individuals living with DSD using an informed decision-making approach that instills realistic expectations and minimizes the potential for false hope. Finally, we conclude with practical recommendations for this case based on the ethical considerations. (shrink)

The end of the cold war has elevated environmental issues to the highest level of concern for humanity while creating a world order dominated by the United States of America and other Western nations. This new power structure may likely lead to increased business activity in many parts of the world, as nations formerly preoccupied with the cold war turn their attention to economic development. This paper examines the linkages among ethics, economic development and protection and restoration of the environment (...) in The New World Order. (shrink)

The meaningful consideration of cultural practices, values and beliefs is a necessary component in the effective translation of advancements in neuroscience to clinical practice and public discourse. Society’s immense investment in biomedical science and technology, in conjunction with an increasingly diverse socio-cultural landscape, necessitates the study of how potential discoveries in neurodegenerative diseases such as Alzheimer disease are perceived and utilized across cultures. Building on the work of neuroscientists, ethicists and philosophers, we argue that the growing field of neuroethics provides (...) a pragmatic and constructive pathway to guide advancements in neuroscience in a manner that is culturally nuanced and relevant. Here we review a case study of one issue in culturally oriented neuroscience research where it is evident that traditional research ethics must be broadened and the values and needs of diverse populations considered for meaningful and relevant research practices. A global approach to neuroethics has the potential to furnish critical engagement with cultural considerations of advancements in neuroscience. (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

The present research examined whether Asian-American (AA) versus European-American (EA) women differed in experiential, expressive, or autonomic physiological responding to a laboratory anger provocation and assessed the mediating role of values about emotional control. Results indicate that AA participants reported and behaviourally displayed less anger than EA participants, while there were no group differences in physiological responses. Observed differences in emotional responses were partially mediated by emotion control values, suggesting a potential mechanism for effects of cultural background on anger responding.

AimThe neurocognitive basis of Developmental Coordination Disorder remains an issue of continued debate. This combined systematic review and meta-analysis provides a synthesis of recent experimental studies on the motor control, cognitive, and neural underpinnings of DCD.MethodsThe review included all published work conducted since September 2016 and up to April 2021. One-hundred papers with a DCD-Control comparison were included, with 1,374 effect sizes entered into a multi-level meta-analysis.ResultsThe most profound deficits were shown in: voluntary gaze control during movement; cognitive-motor integration; practice-/context-dependent (...) motor learning; internal modeling; more variable movement kinematics/kinetics; larger safety margins when locomoting, and atypical neural structure and function across sensori-motor and prefrontal regions.InterpretationTaken together, these results on DCD suggest fundamental deficits in visual-motor mapping and cognitive-motor integration, and abnormal maturation of motor networks, but also areas of pragmatic compensation for motor control deficits. Implications for current theory, future research, and evidence-based practice are discussed.Systematic Review RegistrationPROSPERO, identifier: CRD42020185444. (shrink)

In September 2008, 10 years after the untimely death of Pere Alberch (1954–1998), the 20th Altenberg Workshop in Theoretical Biology gathered a group of Pere’s students, col- laborators, and colleagues (Figure 1) to celebrate his contribu- tions to the origins of EvoDevo. Hosted by the Konrad Lorenz Institute for Evolution and Cognition Research (KLI) outside Vienna, the group met for two days of discussion. The meeting was organized in tandem with a congress held in May 2008 at the Cavanilles Institute (...) for Biodiversity and Evolutionary Biology (ICBiBE) in Valencia, Spain. The talks at the KLI were equal parts: nostalgic remembrance, excitement over new ways of thinking about old problems, and an unrepressed vitriol against the resurgence of reductionist thinking in EvoDevo. Here we highlight some of the key aspects of Pere’s life and work that informed and infused the talks. (shrink)

How does talk work, and can we engage the public in a dialogue about the scientific study of talk? This article presents a history, critical evaluation and empirical illustration of the public science of talk. We chart the public ethos of conversation analysis that treats talk as an inherently public phenomenon and its transcribed recordings as public data. We examine the inherent contradictions that conversation analysis is simultaneously obscure yet highly cited; it studies an object that people understand intuitively, yet (...) routinely produces counter-intuitive findings about talk. We describe a novel methodology for engaging the public in a science exhibition event and show how our ‘conversational rollercoaster’ used live recording, transcription and public-led analysis to address the challenge of demonstrating how talk can become an informative object of scientific research. We conclude by encouraging researchers not only to engage in a public dialogue but also to find ways to actively engage people in taking a scientific approach to talk as a pervasive, structural feature of their everyday lives. (shrink)

Relational reasoning is a complex form of human cognition involving the evaluation of relations between mental representations of information. Prior studies have modified stimulus properties of relational reasoning problems and examined differences in difficulty between different problem types. While subsets of these stimulus properties have been addressed in separate studies, there has not been a comprehensive study, to our knowledge, which investigates all of these properties in the same set of stimuli. This investigative gap has resulted in different findings across (...) studies which vary in task design, making it challenging to determine what stimulus properties make relational reasoning—and the putative formation of mental models underlying reasoning—difficult. In this article, we present the Multidimensional Relational Reasoning Task, a task which systematically varied an array of stimulus properties within a single set of relational reasoning problems. Using a mixed-effects framework, we demonstrate that reasoning problems containing a greater number of the premises as well as multidimensional relations led to greater task difficulty. The MRRT has been made publicly available for use in future research, along with normative data regarding the relative difficulty of each problem. (shrink)

We argued in a recent issue of this journal that if abortion is restricted,1 then there are parallel obligations for parents to donate body parts to their children. The strength of this obligation to donate is proportional to the strength of the abortion restrictions. If abortion is never permissible, then a parent must always donate any organ if they are a match. If abortion is sometimes permissible and sometimes not, then organ donation is sometimes obligatory and sometimes not. Our argument (...) was based on the following ideas: (a) that a fetus has full moral status, (b) that parents have special obligations to their offspring, fetus or not, and (c) that this special obligation is to protect them. The result is the conclusion that abortion restrictivists cannot also consistently deny that organ donation should be compulsory. (shrink)

The FDA's new table of surrogate endpoints used for drug approvals is an important step forward for overseeing the use of biomarkers in clinical trials. Nevertheless, we present several ways in which the table can be improved.