Orphan drug policy often gives ‘special treatment’ to rare diseases, by giving additional priority or making exceptions to specific drugs, based on the rarity of the conditions they aim to treat. This essay argues that the goal of orphan drug policy should be to make prevalence irrelevant to funding decisions. It aims to demonstrate that it is severity, not prevalence, which drives our judgments that important claims are being overlooked when treatments for severe rare diseases are not funded. It shows (...) that prioritising severity avoids problems caused by prioritising rarity, and that it is compatible with a range of normative frameworks. The implications of a severity-based view for drug development are then derived. The severity-based view also accounts for what is wrong with how the current system of drug development unfairly neglects common diseases that burden the developing world. Lastly, the implications of a severity-based view for current orphan drug policies are discussed. There are no data in this work. (shrink)

This article is concerned with the relationship between assessment information and teacher planning. In the UK, although planning used to be central to characterisations of formative assessment, the most recent government proclamations under the 'Assessment for Learning' banner offer no clear role for teachers making decisions about what to do based on assessment information. In this article, the reasons behind the shift will be examined. 'Contingent planning' will be proposed as a mechanism for using assessment information in a planning context.

This article is concerned with the relationship between assessment information and teacher planning. In the UK, although planning used to be central to characterisations of formative assessment, the most recent government proclamations under the 'Assessment for Learning' banner offer no clear role for teachers making decisions about what to do based on assessment information. In this article, the reasons behind the shift will be examined. 'Contingent planning' will be proposed as a mechanism for using assessment information in a planning context.

Human language has the characteristic of being open and in some cases polysemic. The word “infinite” is used often in common speech and more frequently in literary language, but rarely with its precise meaning. In this way the concepts can be used in a vague way but an argument can still be structured so that the central idea is understood and is shared with to the partners. At the same time no precise definition is given to the concepts used and (...) each partner makes his own reading of the text based on previous experience and cultural background. In a language dictionary the first meaning of “infinite” agrees with the etymology: what has no end. We apply the word infinite most often and incorrectly as a synonym for “very large” or something that we do not perceive its completion. In this context, the infinite mentioned in dictionaries refers to the idea or notion of the “immeasurably large” although this is open to what the individual’s means by “immeasurably great.” Based on this linguistic imprecision, the authors present a non Cantorian theory of the potential and actual infinite. For this we have introduced a new concept: the homogon that is the whole set that does not fall within the definition of sets established by Cantor. (shrink)

The deep comprehension of a text is tantamount to the construction of an articulated mental model of that text. The number of correct recollections is an index of a learner's mental model of a text. We assume that another index of comprehension is the timing of the gestures produced during text recall; gestures are simultaneous with speech when the learner has built an articulated mental model of the text, whereas they anticipate the speech when the learner has built a less (...) articulated mental model. The results of four experiments confirm the predictions deriving from our assumptions for both children and adults. Provided that the recollections are correct, the timing of gestures can differ and can be considered a further measure of the quality of the mental model, beyond the number of correct recollections. (shrink)

RESUMOO presente artigo tem como objetivo analisar os meandros da composição e suas intertextualidades na polêmica do samba entre Noel Rosa e Wilson Batista, observando o dialogismo na interação verbal e musical entre os autores e os diversos textos da década de 1930. Ao apurar os ouvidos sobre a "polêmica do samba" observa-se que as composições revelam tensões inexoráveis entre um mundo festivo do "malandro" e os limites da realidade da época. Desse modo, com suporte em estudos que tratam deste (...) tema, busca-se trazer à tona um insight sobre este "duelo" musical que está, certamente, muito mais disseminado na sociedade que restrito a questões puramente estéticas.ABSTRACTThe purpose of this paper is to analyze the meanders of composition and their intertextuality in the samba controversy between Noel Rosa and Wilson Batista. We observe dialogism in the verbal and musical interaction between the samba writers and several texts of the 1930s. When ears are in tune with the "samba controversy," one observes that the compositions reveal inexorable tensions between the festive world of the "malandro" and the limits of the reality of the time. Accordingly, based on studies that address this theme, we aim to present an insight into this musical "duel," which is not restricted to purely aesthetics issues, but certainly disseminated in society. (shrink)

This text, commissioned by the OSUN Global Observatory of Academic Freedom, discusses how the concept of academic freedom is codified in Colombian Law and regulations of public and private higher education institutions. It also explores common conceptions of academic freedom among Colombian scholars, as well as commonly observed threats to it.

Blockchain is an open digital ledger technology that has the capability of significantly altering the way that people operations operate in organizations. This research takes a first step in proposing several ways in which the blockchain technology can be used to improve current organizational practices, while also considering the ethical implications. Specifically, the paper examines the role that blockchain technology plays in three primary areas of people operations: entry to the organization, intraorganizational processes, and exit. In each section, the paper (...) reviews the ethical implications from the lenses of virtue ethics, utilitarianism, deontology and contractarianism. The paper concludes that in whole the implementation of blockchain technology in people operations processes can create a more ethical work environment. However, careful implementation is necessary and requires extensive examination of ethical implications in advance. (shrink)

Inspired by the Studies on authoritarian personality and based on contemporary research on authoritarianism in Brazil, we will analyze the construction of the idol aura surrounding former president Bolsonaro, which allowed the far right to be elected and remain in power until the last elections in 2022. We see his rise as mostly due to the digital violence that largely benefited his campaign and was directed against the block of left-wing candidates. So as to clarify this issue, we will revisit (...) the sociohistorical and psycho-political fundamentals of the antidemocratic and ethnocentric behaviors spurred by that leadership that became idolized. We will also outline an emancipatory, antiracist, culturally relevant and decolonial education, as a way to provide what Adorno regarded as being the antidote to the reemergence of a regressive barbarism. In the case of Brazil, barbarism refers to the remnants of the slave system implemented in the country for three and a half centuries, whose destructive potential was awakened under Bolsonaro’s government, given the latent antidemocratic and authoritarian tendencies in our society. (shrink)

This paper examines folk theories of algorithmic recommendations on Spotify in order to make visible the cultural specificities of data assemblages in the global South. The study was conducted in Costa Rica and draws on triangulated data from 30 interviews, 4 focus groups with 22 users, and the study of “rich pictures” made by individuals to graphically represent their understanding of algorithmic recommendations. We found two main folk theories: one that personifies Spotify and another one that envisions it as a (...) system full of resources. Whereas the first theory emphasizes local conceptions of social relations to make sense of algorithms, the second one stresses the role of algorithms in providing a global experience of music and technology. We analyze why people espouse either one of these theories and how these theories provide users with resources to enact different modalities of power and resistance in relation to recommendation algorithms. We argue that folk theories thus offer a productive way to broaden understanding of what agency means in relation to algorithms. (shrink)

Significant scientific and technological advances in intensive care have been made. However, patients in the intensive care unit may experience discomfort, loss of control, and surreal experiences. This has generated relevant debates about how to humanize the intensive care units and whether humanization is necessary at all. This paper aimed to explore how humanizing intensive care is described in the literature. A scoping review was performed. Studies published between 01.01.1999 and 02.03.2020 were identified in the CINAHL, Embase, PubMed, and Scopus (...) databases. After removing 185 duplicates, 363 papers were screened by title and abstract. Full-text screening of 116 papers led to the inclusion of 68 papers in the review based on the inclusion criteria; these papers mentioned humanizing or dehumanizing intensive care in the title or abstract. Humanizing care was defined as holistic care, as a general attitude of professionals toward patients and relatives and an organizational ideal encompassing all subjects of the healthcare system. Technology was considered an integral component of intensive care that must be balanced with caring for the patient as a whole and autonomous person. This holistic view of patients and relatives could ameliorate the negative effects of technology. There were geographical differences and the large number of studies from Spain and Brazil reflect the growing interest in humanizing intensive care in these particular countries. In conclusion, a more holistic approach with a greater emphasis on the individual patient, relatives, and social context is the foundation for humanizing intensive care, as reflected in the attitudes of nurses and other healthcare professionals. Demands for mastering technology may dominate nurses’ attention toward patients and relatives; therefore, humanized intensive care requires a holistic attitude from health professionals and organizations toward patients and relatives. Healthcare organizations, society, and regulatory frameworks demanding humanized intensive care may enforce humanized intensive care. (shrink)

This article offers a comparative analysis of experimental fetal surgery and fetal tissue research. The author argues that fetuses are positioned differently across each set of practices, with significant implications for actors in these domains. By empirically charting the ways in which humanity is or is not attributed to fetal work objects, the author's argument challenges contemporary debates in science studies that tend to conceptualize human and nonhuman in dualistic terms. This analysis instead shows the heterogeneous attribution of these categories, (...) as well as the spaces, margins, and positions, which constitute them as distinct. (shrink)

This article brings insights from feminist science and technology studies to bear on recent public debates over the human papillomavirus vaccine, which prevents many cervical cancers, and male circumcision as potential HIV preventive. In the United States, attempts to mandate HPV vaccination have activated intense concerns about female “promiscuity,” whereas talk of promoting circumcision against HIV has triggered scant anxiety about American boys’ sexuality. The authors show how intersections among gender, sexuality, race, and age have shaped responses to these two (...) containment technologies—and how the technologies’ deployment both relies on and reproduces meanings of gender and sexuality that constitute the omnipresent “double standard.” The analysis develops an original feminist sociology of containment, explicating how social relations shape the innovation, reinvention, and use of technologies to contain particular sorts of bodies, fluids, and sexual practices—by whom, under what conditions, and for what purposes. (shrink)

Representation is integral to the functioning and legitimacy of modern government. Yet political theorists have often been reluctant to engage directly with questions of representation, and empirical political scientists have closed down such questions by making representation synonymous with congruence. Conceptually unproblematic and normatively inert for some, representation has been deemed impossible to pin down analytically and to defend normatively by others. But this is changing. Political theorists are now turning to political representation as a subject worthy of theoretical investigation (...) in its own right. In their effort to rework the theory of political representation, they are also hoping to impact how representation is assessed and studied empirically. This volume gathers together chapters by key contributors to what amounts to a "representative turn" in political theory. Their approaches and emphases are diverse, but taken together they represent a compelling and original attempt at re-conceptualizing political representation and critically assessing the main theoretical and political implications following from this, namely for how we conceive and assess representative democracy. Each contributor is invited to look back and ahead on the transformations to democratic self-government introduced by the theory and practice of political representation. Representation and democracy: outright conflict, uneasy cohabitation, or reciprocal constitutiveness? For those who think democracy would be better without representation, this volume is a must-read: it will question their assumptions, while also exploring some of the reasons for their discomfort. Reclaiming Representation is essential reading for scholars and graduate researchers committed to staying on top of new developments in the field. (shrink)

To date, COVID-19 has spread across the world, changing our way of life and forcing us to wear face masks. This report demonstrates that face masks influence the human ability to infer emotions by observing facial configurations. Specifically, a mask obstructing a face limits the ability of people of all ages to infer emotions expressed by facial features, but the difficulties associated with the mask’s use are significantly pronounced in children aged between 3 and 5 years old. These findings are (...) of essential importance, as they suggest that we live in a time that may potentially affect the development of social and emotion reasoning, and young children’s future social abilities should be monitored to assess the true impact of the use of masks. (shrink)

Ethical leadership matters in the context of organizational change due to the need for followers to trust the integrity of their leaders. Yet, there have been no studies investigating ethical leadership and organizational change. To fill this gap, we introduce a model of the moderating role of involvement in change. Organizational change and involvement in change are proposed as context-level moderators in the relationships of ethical leadership and work-related attitudes and performance. We employ a sample of 199 supervisor–subordinate pairs from (...) a wide variety of organizations. Results support a three-way interaction (ethical leadership, organizational change, and involvement in change) for performance and OCBs. Our results have important implications for organizational change since ethical leadership appears to complement follower involvement when change is happening. (shrink)

The results in this paper are in a context of abstract elementary classes identified by Shelah and Villaveces in which the amalgamation property is not assumed. The long-term goal is to solve Shelah’s Categoricity Conjecture in this context. Here we tackle a problem of Shelah and Villaveces by proving that in their context, the uniqueness of limit models follows from categoricity under the assumption that the subclass of amalgamation bases is closed under unions of bounded, -increasing chains.

Teachers committed to seeing philosophy as a way of life (PWOL) often focus on assignments that help students develop personal practices, so they experience peace of mind, independence, and a cure from anguish. While we applaud these goals, our work highlights another important aspect of philosophy as a way of life that sometimes is overlooked. We want our students to experience a transformation toward seeing themselves as moral agents, growing in civic virtues, and developing “cosmic consciousness.” To reach this end, (...) we utilize a civic engagement (CE) project that we call the “Experiments in Ethics.” This CE project consists of a series of small, interrelated assignments or “experiments” that help students develop habits and certain civic dispositions. While students complete the experiments throughout the semester, we argue that civically engaged philosophy as a way of life extends beyond the confines of the classroom and the semester as our students cultivate the ability to see themselves as ethical agents capable of making changes in their own lives and the communities in which they live. (shrink)

This paper considers whether and how ‘vitalism’ might be considered relevant as a concept today; whether its relevance should be expressed in terms of disciplinary demarcations between the life sciences and the natural sciences; and whether there is a fundamental incompatibility between a ‘vitalism of process’ and a ‘vitalism as pathos’. I argue that the relevance of vitalism as an epistemological and ontological problem concerning the categorical distinction between living and non-living beings must be contextualized historically, and referred exclusively to (...) the epistemic horizon defined by classical physics. In contrast to this, drawing on the philosophies of Canguilhem, Whitehead, and Atlan, I propose an appreciation of the contemporary relevance of vitalism premised on the pathic and indeterminate character of nature as a whole. From this perspective vitalism expresses a politically significant ethos concerning the relationship between life, knowledge, problems and their solutions. (shrink)

This chapter focuses on the golden era and proposes an exercise of creativity whereby we imagine Diana, the Amazon, becoming Wonder Woman in order to overthrow Man's World. Through Wonder Woman's story, we can build a feminist epic that depicts women who fight patriarchy. In the novel Lesbian Peoples: Material for a Dictionary, Wittig and Zeig describe the Amazons as the warriors thanks to whom we have been able to enter the Golden Age, an age without patriarchy or sex differences. (...) Diana, by becoming Wonder Woman and by fighting against heteropatriarchal injustice, leads the war toward the destruction of this dualistic division. The connection between Amazons and Guerrilleres, between two generations of fighters against patriarchy, aims to inspire our sorority and union in this fight against heteronormative, oppressive structures that affect us all, especially women and other subjects with alternative sexual and gender identities. (shrink)

Through cultural transmission, repeated learning by new individuals transforms cultural information, which tends to become increasingly compressible . Existing diffusion chain studies include in their design two processes that could be responsible for this tendency: learning and reproducing . This paper manipulates the presence of learning in a simple iterated drawing design experiment. We find that learning seems to be the causal factor behind the increase in compressibility observed in the transmitted information, while reproducing is a source of random heritable (...) innovations. Only a theory invoking these two aspects of cultural learning will be able to explain human culture's fundamental balance between stability and innovation. (shrink)

National and international research cultures for the innovation of new medicines involve various value claims about the ethics of the placebo entity as differentiating comparator. Yet, in turn, the instantiation of the placebo comparator as cultural artefact for the creation and identification of the ‘control group’ depends also upon prior social understandings of ‘comparability’. Reading back the ethics controversies surrounding the Risperidone psychiatry trials in India, the paper illustrates why drug efficacies need to be studied not only through comparative techniques (...) such as randomised controlled trials, but also through analytical modes of inquiry that can begin to place the problem of efficacy within particular social and cultural contexts, as well as across disciplines. It is suggested that future bioethics debates could benefit from a revised conception of the interdisciplinary placebo — one that is rooted in ‘placebo politics’ and that listens responsively to the voices of the global South. (shrink)