The relevance of social cognition assessment has been formally described in the Diagnostic and Statistical Manual of Mental Disorders-5. However, social cognition tools evaluating different socio-cognitive components for Italian-speaking populations are lacking. The Edinburgh Social Cognition Test is a new social cognition measure that uses animations of everyday social interactions to assess cognitive theory of mind, affective theory of mind, interpersonal social norm understanding, and intrapersonal social norm understanding. Previous studies have shown that the ESCoT is a sensitive measure of (...) social cognition in healthy and clinical populations in the United Kingdom. This work aimed to adapt and validate the ESCoT in an Italian population of healthy adults. A translation-back-translation procedure was followed to create and refine the Italian version. Then, 94 healthy adults completed the ESCoT, a battery of conventional social cognition tests and measures of intelligence and executive functions. Reliability, convergent validity, and predictors of performance on the ESCoT were examined. Results demonstrated good reliability of the ESCoT and an association between the ESCoT scores and some traditional social cognition tests. Hierarchical regression results showed that the ESCoT total score was associated with age. Also, the ESCoT subscore was associated with education. These findings support the ESCoT as a valid tool testing social norm understanding, a reliable measure of social cognition for an adult Italian population, and provides further evidence that the ESCoT is sensitive to age- and education-related changes in social cognition, and it is a task not affected by general cognitive functioning. (shrink)

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...) to grow. The budget of the National Institutes of Health, for example, was $20,298 million in 2001, having more than doubled from a budget of $9,218 million 10 years before. This growing body of research includes increased efforts to use stored medical records as a source of data for health services, epidemiologic, and clinical studies. (shrink)

Abnormalities in the ability of cells to properly degrade proteins have been identified in many neurodegenerative diseases. Recent work has implicated synaptojanin 1 (SynJ1) in Alzheimer's disease and Parkinson's disease, although the role of this polyphosphoinositide phosphatase in protein degradation has not been thoroughly described. Here, we dissected in vivo the role of SynJ1 in endolysosomal trafficking in zebrafish cone photoreceptors using a SynJ1‐deficient zebrafish mutant, nrca14. We found that loss of SynJ1 leads to specific accumulation of late endosomes and (...) autophagosomes early in photoreceptor development. An analysis of autophagic flux revealed that autophagosomes accumulate because of a defect in maturation. In addition we found an increase in vesicles that are highly enriched for PI(3)P, but negative for an early endosome marker in nrca14 cones. A mutational analysis of SynJ1 enzymatic domains found that activity of the 5'phosphatase, but not the Sac1 domain, is required to rescue both aberrant late endosomes and autophagosomes. Finally, modulating activity of the PI(4,5)P2 regulator, Arf6, rescued the disrupted trafficking pathways in nrca14 cones. Our study describes a specific role for SynJ1 in autophagosomal and endosomal trafficking and provides evidence that PI(4,5)P2 participates in autophagy in a neuronal cell type. -/- . (shrink)

Many biologists appeal to the so-called Krogh principle when justifying their choice of experimental organisms. The principle states that “for a large number of problems there will be some animal of choice, or a few such animals, on which it can be most conveniently studied”. Despite its popularity, the principle is often critiqued for implying unwarranted generalizations from optimal models. We argue that the Krogh principle should be interpreted in relation to the historical and scientific contexts in which it has (...) been developed and used. We interpret the Krogh Principle as a heuristic, i.e., as a recommendation to approach biological problems through organisms where a specific trait or physiological mechanism is expected to be most distinctively displayed or most experimentally accessible. We designate these organisms “Krogh organisms.” We clarify the differences between uses of model organisms and non-standard Krogh organisms. Among these is the use of Krogh organisms as “negative models” in biomedical research, where organisms are chosen for their dissimilarity to human physiology. Importantly, the representational scope of Krogh organisms and the generalizability of their characteristics are not fixed or assumed but explored through experimental studies. Research on Krogh organisms is steeped in the comparative method characteristic of zoology and comparative physiology, in which studies of biological variation produce insights into general physiological constraints. Accordingly, we conclude that the Krogh principle exemplifies the advantages of studying biological variation as a strategy to produce generalizable insights. (shrink)

Despite the enormous progress made in the advancement of health technologies over the last century, infectious diseases continue to cause significant morbidity and mortality in developing countries. Neglected diseases are a subset of infectious diseases that lack treatments that are effective, simple to use, or affordable. Neglected diseases primarily affect populations in poor countries that do not constitute a lucrative market sector, thus failing to provide incentives for the pharmaceutical industry to conduct R&D for these diseases. Of the treatments that (...) do exist for neglected diseases, most are completely out-dated, with poor side-effect profiles, cumbersome logistics of administration, and inadequate efficacy. Historically, the impetus for a majority of neglected disease research was driven by early 20th-century colonialism, and in the post-colonial era, these diseases have been virtually ignored. Of the 1556 New Chemical Entities brought to market during the 30-year period from 1975 to 2004, only 20 — less than 0.02% — were for neglected diseases. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 51-58, January/February 2022.

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

Shoemaker (1996) presenteda prioriarguments against the possibility of ‘self‐blindness’, or the inability of someone, otherwise intelligent and possessed of mental concepts, to introspect any of her concurrent attitude states. Ironically enough, this seems to be a position that Gopnik (1993) and Carruthers (2006, 2008, 2009a,b) have proposed as not only possible, but as the actual human condition generally! According to this ‘Objectivist’ view, supposed introspection of one's attitudes is not ‘direct’, but an ‘inference’ of precisely the sort we make about (...) the attitudes of others, an inference that has the advantage in our own case ofonlyour own sensory data and memories, our behavior, and of the context we are in; i.e. we are all substantially self‐ blind. After sorting out a number of methodological and verbal issues, I argue, first, that thea prioriarguments against Objectivism don't succeed, and that Gopnik and Carruthers are right to regard the issue as an empirical one. On the other hand, I think they seriously underestimate the difficulty of establishing Objectivism. It is unlikely there is an inferential procedure from the data of pure sensation, behavior and context to the relevant self‐attributions that would be as spectacularly reliable as people manifestly seem to be. Moreover, there is a simpler model: the mind very likely consists of a panoply of sub‐routines some of whose outputs are ‘tagged’ for their having been so processed, rather in the way that software ‘documents’ are on standard computers. Introspection plausibly consists in a person's simply attending to distinctive constellations of these tags, even though they may lack phenomenal feels. This draws attention to an important independent fact: that much of phenomenology (or ‘what it's like’ to be in a certain state) may be constituted by facts that are not phenomenal. (shrink)

What does the term academic ethics mean? How does this term relate to others in the academic integrity literature, such as research misconduct? Does conceptual confusion in the study of academic ethics complicate development of valid analyses of ethical behavior in an academic setting? The intended goal of many empirical projects on academic ethics is to draw causal conclusions about the factors that lead to faculty or students possessing or disregarding academic integrity. Yet, it is not clear that scholars using (...) the concept academic ethics are measuring the same phenomenon when they use associated concepts, such as responsible conduct of research. The purpose of this paper is to develop a taxonomy of concepts for the empirical study of academic ethics. Based in research on comparative analysis of democracy, another normatively preferable but multifaceted concept, I argue for a taxonomy of concepts for the study of academic integrity that reduces problems of “conceptual stretching” and challenges to the validity of empirical research in this field. (shrink)

In their 2010 article ‘Research Integrity in China: Problems and Prospects’, Zeng and Resnik challenge others to engage in empirical research on research integrity in China. Here we respond to that call in three ways: first, we provide updates to their analysis of regulations and allegations of scientific misconduct; second, we report on two surveys conducted in Hong Kong that provide empirical backing to describe ways in which problems and prospects that Zeng and Resnik identify are being explored; and third, (...) we continue the discussion started by Zeng and Resnik, pointing to ways in which China's high-profile participation in international academic research presents concerns about research integrity. According to our research, based upon searches of both English and Chinese language literature and policies, and two surveys conducted in Hong Kong, academic faculty and research post-graduate students in Hong Kong are aware of and have a positive attitude towards responsible conduct of research. Although Hong Kong is but one small part of China, we present this research as a response to concerns Zeng and Resnik introduce and as a call for a continued conversation. (shrink)

Does responsible conduct of research (RCR) training improve levels of trust between researchers? Using data gathered as part of a survey on the attitudes of master's and doctoral-level students toward RCR, we found that RCR training correlated with a weakened beliefs of students toward their supervisors' ethicality but a stronger belief in the ethicality of their peers. We believe that these findings point to new avenues of research on trust in the academic setting and to needs for curriculum changes in (...) RCR training. (shrink)

While public administration research is thriving because of increased attention to social scientific rigor, lingering problems of methods and ethics remain. This article investigates the reporting of ethics approval within public administration publications. Beginning with an overview of ethics requirements regarding research with human participants, I turn to an examination of human participants protections for public administration research. Next, I present the findings of my analysis of articles published in the top five public administration journals over the period from 2000 (...) to 2012, noting the incidences of ethics approval reporting as well as funding reporting. In explicating the importance of ethics reporting for public administration research, as it relates to replication, reputation, and vulnerable populations, I conclude with recommendations for increasing ethics approval reporting in public administration research. (shrink)

Many journals in the physical sciences require authors to submit assurances of compliance with human subjects and other research ethics standards. These requirements do not cover all disciplines equally, however. In this paper we report on the findings of a survey of perceptions of ethical and managerial problems from journal editors in political science and related disciplines. Our results show that few journals in political science require assurance statements common to journals for other scientific disciplines. We offer some reasons for (...) this as well as some recommendations for implementing ethical assurance safeguards for political science. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Fitness, Fatness, and Aesthetic Judgments of the Female Body:What the AMA Decision to Medicalize Obesity means for other Non–Normal Female BodiesSara R. Jordan“I’ll be happy to refer you to our dietician to get you on a program to help you get your weight under control before it becomes a problem”.As my new physician spun around out of the examination room door, my head spun faster. I had heard the (...) phrase “get your weight under control” twice that morning, but the contexts in which the phrase was uttered could not have been more different.At 7:30 a.m., my fitness trainer was imploring me to get my weights under control as I struggled under a bar, laden with slightly less than my body weight, to do a final set of front squats. At 11:15 a.m., my new general practitioner was imploring me to get my weight under control, by which he meant to learn how to reduce my body mass index (BMI) to match the chart prominently displayed on his office wall. The exhortation to get my weight under control meant such radically different things in these two contexts that it was difficult to comprehend the meaning of the phrase.I am 5’4” and 158 pounds. This gives me a BMI of 27.3, which means that I am considered overweight; right in the middle of the category of overweight. Or, according to the definition of the BMI found on the calculator pinned to the National Heart Lung and Blood Institutes (NHLBI) webpage, I am over fat. If the BMI is, “a measure of body fat based on height and weight that applies to adult men and women” then I carry a health–threatening percentage of body fat. If my fitness trainer, with his 12 point skin–fold caliper test is correct, my body fat percentage of 17% is within the limits expected of female (non–endurance) athletes. In terms of health, then, I am a paradox: according to one standard, I am healthy and fit, according to another, I am unhealthy and fat.As this new physician picked apart my weight, suggesting I should lose between 15 and 20 pounds to bring myself to “full health”, I found myself quite annoyed. He was a small, rail thin, man with greying hair, tired eyes, unpressed khakis, and a beaten pair of black–ish grey “Crocs” on his feet. He looked disheveled and as if he had not seen the inside of a weights room in his life. As I listened to him address my history, current vitals, and how being overweight in my 30s could lead to being [End Page 101] “fat and 40”, I looked him over and made a snap judgment of “I could bench (press) you [right out this window]”. While I was angry with his delivery, I tried to remind myself that he was an overworked physician in a multi–lingual office, trying to operate under a new paradigm in healthcare policy, practice, and diagnostic categories. Specifically, prompted by the medicalization of the condition of obesity by the American Medical Association, my physician was reflecting the professional wisdom that I suffer from a condition needing preventive treatment. He was trying to be a good practitioner to recommend preventive treatment, but to me, he was being a terrible physician.The AMA Declares Obesity a DiseaseThe declaration by the American Medical Association in 2013 that the condition of being obese is one that requires medical treatment is one that I, on the face of it, support. By inviting the medicalization of the condition, the AMA opens the door for individuals who wage a deeply personal battle with their weight to find support in their physicians’ offices and from their insurance companies. Yet, the blunt tools that are used to assess these conditions raise my ire, emotionally and intellectually.Intellectually, the use of the BMI calculator for snap diagnosis of all individuals makes easy sense. It is an easily comprehended tool and, for a normally distributed population, such a simple tool is an excellent choice. But, it stands to treat outliers like me poorly. Outliers, such as particularly fit... (shrink)

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the (...) practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives. (shrink)

The Milgram obedience experiments called into question the limits of obedience to authority figures. The perverse consequences of concerns over the Milgram experiments are that researchers must now submit to the authority of ethics review boards and that researchers are considered prima facie to be threats to participants. These assumptions are questioned widely by social science researchers, but this article argues that these assumptions seem to have blinded analysts to the possibility that there may be a group of participants that (...) might also be threatened by the power of authority figures in a research situation—researchers. Regarding the second point, social science researchers “interviewing up” may themselves be threatened, whether overtly or covertly, by their participants’ relative authority and power. In cases where researchers work with extraordinarily powerful respondents, what might IRBS and the researchers they work for learn from the Milgram experiments? (shrink)

By 2014, each of the fifty states and the District of Columbia will have a new health insurance exchange, or marketplace, established under the Patient Protection and Affordable Care Act. These exchanges are the centerpiece of the reform law: they will be the main portals where people who do not have health insurance coverage through their jobs and small businesses will go, either in person or online, to find a health plan and to learn about and apply for federal subsidies. (...) The most immediate challenge facing all fifty‐one exchanges is fulfilling their most basic role: ensuring that all who are eligible to enroll in qualified health plans and to receive federal subsidies in fact enroll. (shrink)

In their 2010 article ‘Research Integrity in China: Problems and Prospects’, Zeng and Resnik challenge others to engage in empirical research on research integrity in China. Here we respond to that call in three ways: first, we provide updates to their analysis of regulations and allegations of scientific misconduct; second, we report on two surveys conducted in Hong Kong that provide empirical backing to describe ways in which problems and prospects that Zeng and Resnik identify are being explored; and third, (...) we continue the discussion started by Zeng and Resnik, pointing to ways in which China's high‐profile participation in international academic research presents concerns about research integrity. According to our research, based upon searches of both English and Chinese language literature and policies, and two surveys conducted in Hong Kong, academic faculty and research post‐graduate students in Hong Kong are aware of and have a positive attitude towards responsible conduct of research. Although Hong Kong is but one small part of China, we present this research as a response to concerns Zeng and Resnik introduce and as a call for a continued conversation. (shrink)

This book is a timely new interpretation of the moral and political philosophy of Thomas Hobbes. Staying close to Hobbes's text and working from a careful examination of the actual substance of the account of natural law, R.E. Ewin argues that Hobbes well understood the importance of moral behavior to civilized society. This interpretation stands as a much-needed corrective to readings of Hobbes that emphasize the rationally calculated, self-interested nature of human behavior. It poses a significant challenge to currently fashionable (...) game theoretic reconstructions of Hobbesian logic. It is generally agreed that Hobbes applied what he took to be a geometrical method to political theory. But, as Ewin forcefully argues, modern readers have misconstrued Hobbes's geometric method, and this has led to a series of misunderstandings of Hobbes's view of the relationship between politics and morality. Important implications of Ewin's reading are that Hobbes never thought that "the war of each against all" was an empirical possibility for citizens; that his political theory actually presupposes moral agency; and that Hobbes's account of natural law forces us to the conclusion that Hobbes was a virtue theorist. This major contribution to Hobbes studies will be praised and criticized, welcomed and challenged, but it cannot be ignored. All philosophers, political theorists, and historians of ideas dealing with Hobbes will need to take account of it. (shrink)

Concepts, Kovesi argued in Moral Notions and elsewhere, are formed from a point of view; they express relevant needs, wants, interests, ideals, and attitudes, and are formed from a point of view that can be anybody’s. The point of view need not be everybody’s (not everybody is interested in chess, for example), but it is a point of view that can be taken by anybody. The point of view expresses our purpose in forming the concept (p. 48)1; it is the (...) point of view of somebody dealing with certain sorts of problems, and that determines which material elements will come under the concept. But Kovesi refuses to explain in any of his writings what the moral point of view is, and says that it is no part of his project to explain that (see especially pp. 105 ff). This is not a matter of his refusing to say whether he is taking a Utilitarian point of view or an Emotivist point of view of anything of that sort. His question is a much more basic one about the logical structure of moral concepts and their relationships to the problems morality is formed to deal with. His refusal to explain the moral point of view is puzzling. The moral point of view that Kovesi envisaged, I think, is the point of view of members of a species the members of which have to get on together, a species members of which have the qualities of character that enable them to get on together. (shrink)

This article considers the engagement of Mario Tronti - one of the leading figures of classical Italian workerism [operaismo] - with the thought of Max Weber. Weber constituted one of Tronti’s most important cattivi maestri. By analysing Weber’s influence upon Tronti’s development, this article aims to show the ways in which this encounter affected his Marxism and political theory in general. In particular, during the period of the debate in Italian Marxism about the thesis of the autonomy of the political, (...) Tronti increasingly adopted Weberian terminology and theoretical points of reference. Ultimately, the article argues that Tronti’s heretical method led him to incorporate and to re-propose theoretical and political problematics that are characteristic of bourgeois political theory: namely, the dyad administration/charisma, and a teleological and anthropological approach to history. Focusing upon this heterodox encounter therefore enables us to understand one of the trajectories of the transformation of Marxism that occurred during its recurrent rendezvous with the ‘Marx of the bourgeoisie’. (shrink)

Background:Caring for a partner with primary malignant brain tumour can be a dramatic life-changing event. Primary malignant brain tumour is known to give poor life expectancy and severe neurological and cognitive symptoms, such as changed behaviour and personality, which demand greater caring responsibilities from spouses.Aim:The aim of the study is to explore ethical dilemmas spouses experience in the everyday care of a partner in treatment for primary malignant brain tumour.Research design, participants and research context:A phenomenological and hermeneutic qualitative descriptive design (...) was adopted as a method for collecting and analysing data. Ten spouses were interviewed twice using an in-depth, semi-structured interview guide. The interviews took place at the spouses’ homes or at the hospital.Ethical consideration:Ethical matters were considered throughout the research process. Permission from The National Committee on Health Research Ethics and the Danish Data Protection Agency was obtained.Findings:The analysis showed that the spouses perceived daily ethical dilemmas in caring for a partner with primary malignant brain tumour. Their life as well as their partner’s life had changed considerably. The main theme that emerged therefore was ‘oscillating in a changing relationship’. This theme was further elaborated in three subthemes that in more detail demonstrated the dilemmas: ‘doing the right thing in unpredictable daily situations’; ‘torn between patience and guilt’; and ‘living in a time of uncertainty, hope and despair’.Conclusion:Caring for a partner with changed behaviour and personality due to primary malignant brain tumour may involve exhausting ethical caring dilemmas. Spouses’ married life may change to a semi-professional asymmetrical relationship, which is challenged by the oscillation between acting responsibly for their partners’ well-being and caring dilemmas with no answer for what the right thing to do is. Mixed feelings of right and wrong, patience and guilt, hope and despair seem to be spousal companions through their partners’ progressing illness. (shrink)

Translational ethics (TE) has been developed into a specific approach, which revolves around the argument that strategies for bridging the theory‐practice gap in bioethics must themselves be justified on ethical terms. This version of TE incorporates normative, empirical and foundational ethics research and continues to develop through application and in the face of new ethical challenges. Here, I explore the idea that the academic field of bioethics has not yet sufficiently analysed its own philosophical foundation for how it can, and (...) should, be practically relevant; neither has it comprehensively discussed the limitations on what impacts bioethicists should pursue. As a result, there has not been adequate training on how to suitably and appropriately impact real‐world practices. Moreover, bioethical perspectives are often competing with other strong interests, for example, economic and political, which may weaken their impact on policy‐making. The TE approach I propose can not only facilitate practical impacts of academic bioethics by being better informed by real‐world ethical issues but it also supports targeted and ethical justifications of the actual impact of academic work in real‐world contexts. In this paper, I clarify the premises for this TE approach, identify further challenges and sketch out potential solutions for the implementation of this methodological framework. (shrink)