Rare neuromuscular diseases are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and social care services. Teleassistance is presented as a useful tool to perform psychosocial interventions in these situations. The main aim of this research is to assess the effects of a teleassistance psychosocial program on the QoL (...) levels of people with RNMDs who have different levels of disability. A sample of 73 participants was divided into an experimental group, which participated in the intervention, and a control wait list group. QoL was evaluated through the SIP and the SF-36, and disability through the WHO-DAS II. The participants with a moderate to severe level of disability were those who most benefited from the intervention. The results also revealed that the psychosocial teleassistance program was suitable to improve physical and psychosocial aspects of people suffering from a rare neuromuscular disease with a moderate level of disability, but just psychosocial aspects in those with a severe level of disability. (shrink)

When ethical decisions have to be taken in critical, complex medical situations, they often involve decisions that set the course for or against life-sustaining treatments. Therefore the decisions have far-reaching consequences for the patients, their relatives, and often for the clinical staff. Although the rich psychology literature provides evidence that reasoning may be affected by undesired influences that may undermine the quality of the decision outcome, not much attention has been given to this phenomenon in health care or ethics consultation. (...) In this paper, we aim to contribute to the sensitization of the problem of systematic reasoning biases by showing how exemplary individual and group biases can affect the quality of decision-making on an individual and group level. We are addressing clinical ethicists as well as clinicians who guide complex decision-making processes of ethical significance. Knowledge regarding exemplary group psychological biases (e.g. conformity bias), and individual biases (e.g. stereotypes), will be taken from the disciplines of social psychology and cognitive decision science and considered in the field of ethical decision-making. Finally we discuss the influence of intuitive versus analytical (systematical) reasoning on the validity of ethical decision-making. (shrink)

Judith Jarvis Thomson argued that abortion is permissible because no one must sacrifice their rights to bodily autonomy. However, assuming a fetus has full moral personhood, and focusing on when abortion is unjust in particular, we argue that Thomson's view of what we ought to sacrifice to aid others is too impoverished. Instead, we argue that abortion is permissible when pregnancy threatens the ability of the mother, or the child, to live minimally well. After explaining the minimally good life account (...) and its application to abortion, we explain its advantages over alternative views. Finally, we examine arguments concluding that abortion is permissible because fetuses are not persons. We argue that personhood is probably a matter of degree rather than a binary property. Thus, abortion is generally permissible early in pregnancy, but as the fetus gets closer to full personhood, adopting the minimally good life standard is appropriate. (shrink)

For many peoples the fall of the Soviet regime saw the disappearance of a structure that had ensured their membership of entities with which they had in fact been only partially able to identify. This is true of the Buryats and Russians living in Buryatia, a former autonomous republic on the shores of Lake Baikal in southern central Siberia.

This scarce antiquarian book is a facsimile reprint of the original. Due to its age, it may contain imperfections such as marks, notations, marginalia and flawed pages. Because we believe this work is culturally important, we have made it available as part of our commitment for protecting, preserving, and promoting the world's literature in affordable, high quality, modern editions that are true to the original work.

This unique volume introduces and discusses the methods of validating computer simulations in scientific research. The core concepts, strategies, and techniques of validation are explained by an international team of pre-eminent authorities, drawing on expertise from various fields ranging from engineering and the physical sciences to the social sciences and history. The work also offers new and original philosophical perspectives on the validation of simulations. Topics and features: introduces the fundamental concepts and principles related to the validation of computer simulations, (...) and examines philosophical frameworks for thinking about validation; provides an overview of the various strategies and techniques available for validating simulations, as well as the preparatory steps that have to be taken prior to validation; describes commonly used reference points and mathematical frameworks applicable to simulation validation; reviews the legal prescriptions, and the administrative and procedural activities related to simulation validation; presents examples of best practice that demonstrate how methods of validation are applied in various disciplines and with different types of simulation models; covers important practical challenges faced by simulation scientists when applying validation methods and techniques; offers a selection of general philosophical reflections that explore the significance of validation from a broader perspective. This truly interdisciplinary handbook will appeal to a broad audience, from professional scientists spanning all natural and social sciences, to young scholars new to research with computer simulations. Philosophers of science, and methodologists seeking to increase their understanding of simulation validation, will also find much to benefit from in the text. (shrink)

Topics in Cognitive Science, Volume 14, Issue 1, Page 163-188, January 2022.

Digital contact tracing, in combination with widespread testing, has been a focal point for many plans to “reopen” economies while containing the spread of Covid‐19. Most digital contact tracing projects in the United States and Europe have prioritized privacy protections in the form of local storage of data on smartphones and the deidentification of information. However, in the prioritization of privacy in this narrow form, there is not sufficient attention given to weighing ethical trade‐offs within the context of a public (...) health pandemic or to the need to evaluate safety and effectiveness of software‐based technology applied to public health. (shrink)

Based on its prevalence, there is an urgent need to better understand the mechanisms, opportunities and risks of sexual interaction in digital contexts that are related with sexual arousal. While there is a growing body of literature on SIDC, there is also a lack of conceptual clarity and classification. Therefore, based on a conceptual analysis, we propose to distinguish between sexual interaction through, via, and with digital technologies. Sexual interactions through digital technologies are face-to-face sexual interactions that have been started (...) digitally or are accompanied by digital technology. Sexual interactions via digital technology are technology-mediated interpersonal sexual interactions. Sexual interactions with digital technology occur when the technology itself has the role of an interaction partner. The three types of SIDC and their respective subtypes are explained and backed up with empirical studies that are grouped according to two major mediators: consent and commerce. Regarding the causes and consequences of the three types of SIDC we suggest a classification that entails biological, psychological, social, economic, and technological factors. Regarding implications of SIDC we suggest to focus on both opportunities and risks for sexual health. The proposed conceptual framework of SIDC is meant to inform future research. (shrink)

This work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work was reproduced from the original artifact, and remains as true to the original work as possible. Therefore, you will see the original copyright references, library stamps (as most of these works have been housed in our most important libraries around the world), and other notations in the work. This work is in the public domain (...) in the United States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work. As a reproduction of a historical artifact, this work may contain missing or blurred pages, poor pictures, errant marks, etc. Scholars believe, and we concur, that this work is important enough to be preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (shrink)

First, to what level of quality can medical ethics a spire, if it ignores callous discrimination in medrcal practice against large populations of the innocent poor? Second, how effective can such theories be in addressing the critical issues of medical and clinical ethics if they are unable to contribute to the closing of the gap of sociomedical disparity?Marcio Fabri dos Anjos, Medical Ethics in the Developing World: A Liberation Theology Perspective.

Mientras Carole Pateman (1988) afirma que «para las feministas la democracia no ha existido jamás», Julieta Kirkwood (1986) sostiene que «no hay democracia sin feminismo». Ambas aluden a la deuda del ideal democrático con la emancipación de las mujeres, e incluso a la función estructural de la exclusión de las mujeres en la democracia liberal. A partir de los encuentros y desencuentros entre democracia y feminismo, el presente artículo pretende ofrecer una definición de la democracia feminista que vaya más allá (...) de la inclusión a través de la acción afirmativa, abordando las tensiones que esta genera en el debate feminista de las últimas décadas y los nuevos desafíos en torno a las políticas de redistribución y de reconocimiento. ¿Es posible superar la opresión y la dominación a partir de políticas centradas en el interés de grupo? ¿Cómo se define ese interés sin esencializar la diferencia? Responder a estas preguntas resulta clave para plantear un concepto eficaz de democracia feminista. (shrink)

Background In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.Methods Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.Results We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant (...) consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.Conclusions Upstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in “pantomime community engagement.” This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process. (shrink)

The consequences of foreign direct investment (FDI) for human rights protection are poorly understood. We propose that the impact of FDI varies across industries. In particular, extractive firms in the oil and mining industries go where the resources are located and are bound to such investment, which creates a status quo bias among them when it comes to supporting repressive rulers (“location-bound effect”). The same is not true for nonextractive multinational corporations (MNCs) in manufacturing or services, which can, in comparison, (...) exit problematic countries more easily. We also propose that strong democratic institutions can alleviate negative impacts of extractive FDI on human rights (“democratic safeguard effect”). Using U.S. FDI broken up into extractive and nonextractive industries in 157 host countries (1999–2015), we find support for these propositions.1 Extractive FDI is associated with more human rights abuse, but nonextractive FDI is associated with less abuse, after controlling for other factors, including concerns about endogeneity. We find also that the negative human rights impact of extractive FDI vanishes in countries where democratic institutions are stronger. Our results are robust to a range of alternative estimation techniques. (shrink)

Editors' introduction to Puncta's February 2022 Special Issue, "Pandemic Politics and Phenomenology.".

Recent studies reveal some of the neurophysiological mechanisms involved in drug addiction. This prompts some theorists to claim that drug addiction diminishes responsibility. Stephen Morse however rejects this claim. Morse argues that these studies show that drug addiction involves neither compulsion, coercion, nor irrationality. He also adds that addicted people are responsible for becoming addicted and for failing to take measures to manage their addiction. After summarizing relevant neuroscience of addiction literature, this chapter engages critically with Morse to argue that (...) a subgroup of addicted people does meet plausible criteria for compulsion, coercion, or irrationality; that few addicted people are fully responsible for becoming addicted; and that some addicted people can be at least partly excused for failing to manage their addiction. Pickard and Lacey’s “responsibility without blame” approach is also suggested as a fruitful basis for future work in this field. (shrink)

Previous discussions of the evolution of the self have diverged greatly in their estimates of the date at which the capacity for self-thought emerged, the factors that led self-reflection to evolve, and the nature of the evidence offered to support these disparate conclusions. Beginning with the assumption that human self-awareness involves a set of distinct cognitive abilities that evolved at different times to solve different adaptive problems, we trace the evolution of self-awareness from the common ancestor of humans and apes (...) to the beginnings of culture, drawing upon paleontological, anthropological, biological, and psychological evidence. These data converge to suggest that that modern self-thought appeared just prior to the Middle-Upper Paleolithic transition, approximately 60,000 years ago.Recto running head: Evolution of the Self. (shrink)

Background Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the “duty to report” from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator (...) and researcher perspectives on and questions about the assumed value of ROR in PMR.Methods Semi-structured interviews with a purposive sample of investigators and researchers across federally funded PMR studies in three national consortia, as well as observations of study activities, focused on how PM researchers conceptualize diversity and implement inclusive practices across research stages, including navigating ROR.Results Interviewees (1) validated the value of ROR as a benefit of PMR, while others (2) questioned the benefit of clinically actionable results to individuals in the absence of sufficient resources for translating findings into health care for diverse and disadvantaged populations; (3) expressed uncertainties in applying the presumed value of ROR as a benefit for non-clinical results; and (4) and debated when the promise of the value of ROR may undermine trust in PMR, and divert efforts to return value beyond ROR.Conclusions Conceptualizations of diversity and inclusion among PM researchers and investigators raise unique ethical questions where unexamined assumptions of the value of ROR inform study recruitment efforts to enroll minoritized and under-represented populations. A lack of consideration for resources and infrastructure necessary to translate ROR into actionable information may hinder trustworthy community-research relationships. Thus, we argue for a more intentional interrogation of ROR practices as an offer of benefit and for whom. (shrink)

Medicine and its allied health sciences have for too long been peripherally involved in work on human rights. Fifty years ago, the door to greater involvement was opened by Article 25 of the Universal Declaration of Human Rights, which underlined social and economic rights: “Everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing, housing, and medical care and necessary social services, and the right to security in (...) the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.”. (shrink)

Le projet de mondialisation néolibérale, qui consiste à étendre et à maintenir le capitalisme à l’échelle mondiale, nécessite la création d’États-nations néolibéraux qui intégreront son idéologie, ses pratiques et ses structures politiques. En ce sens, l’État-nation néolibéral constitue un site conceptuel approprié pour examiner le lien entre le local et le global dans la dynamique du capitalisme mondial. En prenant les Philippines comme exemple, l’article examine les différents facteurs ou dimensions qui ont fait des Philippines un État-nation néolibéral, depuis l’époque (...) coloniale jusqu’aux structures supranationales qui exercent un contrôle externe sur l’économie politique philippine : le pouvoir mondial des sociétés transnationales, le FMI, l’impérialisme américain et chinois, y compris l’aide militaire américaine qui soutient la militarisation et la contre-insurrection contre les mouvements remettant en question le programme néolibéral des régimes passés et actuels. Enfin, l’article considère les répercussions que les mouvements antimondialisation peuvent avoir sur le changement d’orientation politique et sur les stratégies de résistance mondiale. (shrink)

Previous research on scalar implicature has primarily relied on meta-linguistic judgment tasks and found varying rates of such inferences depending on the nature of the task and contextual manipulations. This paper introduces a novel interactive paradigm involving both a production and a comprehension side and a precise conversational goal. The main research question is what is reliably communicated by some in this communicative setting, both when the quantifier occurs in unembedded and embedded positions. Our new paradigm involves an action-based task (...) from which participants’ interpretation of utterances can be inferred. It incorporates a game-theoretic design, thereby including a precise model to predict participants’ behaviour in the experimental context. Our study shows that embedded and unembedded implicatures are reliably communicated by some. We propose two cognitive principles that describe what can be left unsaid. In our experimental context, a production strategy based on these principles is more efficient than a strategy based on literal descriptions. (shrink)

Little consensus exists about the effectiveness of transnational private governance in domains such as labor, the environment, or human rights. The paper builds on recent scholarship on labor standards to emphasize the role of labor agency in transnational private governance. It argues that the relationship between transnational private regulatory initiatives and labor agency depends on three competences: first, the ability of workers’ organizations to gain access to processes of employment regulation, implementation, and monitoring; second, their ability to insist on the (...) inclusion of employers and state agencies within such processes; and third, the ability of workers to effectively exercise leverage in pursuit of particular goals. The paper develops a framework, called hybrid production regime, for examining how workers’ capacity to act at the local level depends on how these three collective competences are addressed in the institutionalization of capital–labor relations between the transnational and national levels. (shrink)

Like other key terms in the medical and health humanities—empathy, creativity, and reflection, to name just a few—wellness has become a weasel word, rife the language of optimization, duty, and self-perception. While alternative vocabularies exist—well-being and quality of life among them—these options usually privilege the objectives of academic (often psychological) research, health institutions, and the economic state apparatus, rather than people themselves. In mind of these concerns, why attempt to make a case for wellness at all? We present a historically (...) informed, theoretically driven, praxis-guided framework for a renewed vision of social wellness (a concept first defined in the late 1950s). While definitions since Bill Hettler’s “hexagonal” model (1980) have included mutual respect for others and the assumption of cooperative behaviors, conspicuously absent from contemporary definitions and usage is any mention of the aesthetic realm, which we—alongside philosophers like Amartya Sen and Martha Nussbaum—take as a central human capability. How can the relational possibilities of arts engagement be understood as not just a means of promoting individual wellness, but also as a method and outcome of social wellness? We propose that social wellness is ultimately premised on the interplay between wellness of the collective and the strength of the relational encounters it engenders. We turn to a key practice paradigm—community arts engagement—as both a vehicle for and site of social wellness. With brief reference to a Canadian exemplar, we conclude with concrete recommendations for addressing critical opportunities for advancing arts-led social wellness initiatives involving academic and community partners. (shrink)

In this paper, we discuss how phenomenology might cogently express the way painful experiences are layered with complex intersubjective meaning. In particular, we propose a critical conception of pain as an intricate multi-levelled phenomenon, deeply ingrained in the constitution of one’s sense of bodily self and emerging from a web of intercorporeal, social, cultural, and political relations. In the first section, we review and critique some conceptual accounts of pain. Then, we explore how pain is involved in complex ways with (...) modalities of pleasure and displeasure, enacted personal meaning, and contexts of empathy or shame. We aim to show why a phenomenology of pain must acknowledge the richness and diversity of peculiar painful experiences. The second section then weaves these critical insights into Husserlian phenomenology of embodiment, sensation, and localisation. We introduce the distinction between Body-Object and Lived-Body to show how pain presents intersubjectively. Furthermore, we stress that, while pain seems to take a marginal position in Husserl’s whole corpus, its role is central in the transcendental constitution of the Lived-Body, interacting with the personal, interpersonal, and intersubjective levels of experiential constitution. Taking a critical-phenomenological perspective, we then concretely explore how some people may experience structural conditions which may make their experiences more or less painful. (shrink)

Ethical attitudes and behaviour are complex. This complexity extends to the influencers operating at different levels both outside and within the organisation, and in different combinations for different individuals. There is hence a growing need to understand the proximal and distal influencers of ethical attitudes, and how these operate in concert at the individual, organisational, and societal levels. Few studies have attempted to combine these main research streams and systematically examine their combined impact. The minority of studies that have taken (...) a combined approach have often done so using conventional statistical and analytical techniques which imply linearity between variables—a situation that rarely exists in business settings and is likely to lead to simplistic or even erroneous conclusions. Applying a fuzzy-set qualitative comparative analysis approach, this paper reports on the mutual and simultaneous influence of individual demographic factors, as well as proximal and distal factors stemming from within and outside the work environment to understand individuals’ ethical views within the workplace. The multiple configurations that emerged reveal the complex nature of influencers of ethical attitudes, and reinforce the view that “one size does not fit all”. We discuss these implications together with managerial recommendations and future research directions. (shrink)

Experimental cattle aided agricultural scientists throughout the nineteenth and twentieth centuries in their efforts to produce beef and milk more efficiently for the growing human populations of the United States. Feed experiments were especially important for understanding how and what cattle needed to eat to better produce this food. However, as experts dedicated their time toward creating the most “economical” rations, their organism of focus shifted. This essay describes how scientific efforts to understand feed conversion in livestock became increasingly focused (...) on the role of ruminant microorganisms over the course of the twentieth century. Highlighting media coverage of fistulated cows and the design of artificial rumens, I argue that the scientific shift from macro- to microorganism was contemporaneously embraced and, in turn, funded by agricultural chemical companies to better market animal feed products by the postwar period. (shrink)

This paper explores the bioethical issues associated with the diagnosis and treatment of vulvar cancer for Indigenous women in East Arnhem Land, Northern Territory, Australia. Based on a qualitative study of a vulvar cancer cluster of Indigenous women, the article highlights four main topics of bioethical concern drawn from the findings: informed consent, removal of body parts, pain management, and issues at the interface of Indigenous and Western health care. The article seeks to make a contribution towards Indigenous health and (...) bioethics and bring to light areas of further research. (shrink)

Hastings Center Report, Volume 52, Issue 2, Page 49-57, March‐April 2022.