Research involving minors has been the subject of much ethical debate. The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research participants. Long-term studies with a genetic component involve collection, retention and use of biological samples and personal information over many years. Cohort studies may be established to study specific conditions (e.g. autism, asthma) or may have a broad aim to research a range of (...) factors that influence the health and development of children. Studies are increasingly intended to serve as research platforms by providing access to data and biological samples to researchers over many years. (shrink)

ABSTRACTElder abuse is a serious and under-detected problem. Law reform agencies and legal profession regulatory authorities have called for action to ensure that lawyers meet their ethical obligations to older clients, including identifying and acting on risk factors for abuse. Screening tools to detect situations of elder abuse exist, but they are targeted mainly at health and social care practitioners. Drawing on international literature, this article identifies and discusses screening tools that could be adapted for use by legal professionals. Three (...) general categories of screening are relevant for lawyers who serve older clients: elder abuse screening tools that cover all domains of abuse or target specific behaviours, such as financial exploitation; screening for decision-making capacity, especially taking account of the impact of abuse or neglect on capacity; and screening to probe the suitability of a person to act in a formal decision-making role for an older person. The article emphas... (shrink)

BackgroundDefensive practice occurs when physicians provide services, such as tests, treatments and referrals, mainly to reduce their perceived legal or reputational risks, rather than to advance patient care. This behaviour is counter to physicians’ ethical responsibilities, yet is widely reported in surveys of doctors in various countries. There is a lack of qualitative research on the drivers of defensive practice, which is needed to inform strategies to prevent this ethically problematic behaviour.MethodsA qualitative interview study investigated the views and experiences of (...) physicians in Australia on defensive practice and its contribution to low value care. Interviewees were recruited based on interest in medico-legal issues or experience in a health service involved in ‘Choosing Wisely’ initiatives. Semi-structured interviews averaged 60 min in length. Data were coded using the Theoretical Domains Framework, which encapsulates theories of behaviour and behaviour change.ResultsAll participants (n = 17) perceived defensive practice as a problem and a contributor to low value care. Behavioural drivers of defensive practice spanned seven domains in the TDF: knowledge, focused on inadequate knowledge of the law and the risks of low value care; skills, emphasising patient communication and clinical decision-making skills; professional role and identity, particularly clinicians’ perception of patient expectations and concern for their professional reputation; beliefs about consequences, especially perceptions of the beneficial and harmful consequences of defensive practice; environmental context and resources, including processes for handling patient complaints; social influences, focused on group norms that encourage or discourage defensive behaviour; and emotions, especially fear of missing a diagnosis. Overall, defensive practice is motivated by physicians’ desire to avoid criticism or scrutiny from a range of sources, and censure from their professional peers can be a more potent driver than perceived legal consequences.ConclusionsThe findings call for strengthening knowledge and skills, for example, to improve clinicians’ understanding of the law and their awareness of the risks of low value care and using effective communication strategies with patients. Importantly, supportive cultures of practice and organisational environments are needed to create conditions in which clinicians feel confident in avoiding defensive practice and other forms of low value care. (shrink)

Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. We contend that this legislative variation precludes (...) a consistent approach to research governance and participation and hinders research that seeks to include people with impaired capacity. In this paper, we present key ethical principles, provide a comprehensive review of applicable legal rules in Australian states and territories, and highlight significant differences and ambiguities. Our analysis includes recommendations for reform to improve clarity and consistency in the law and reduce barriers that may exclude persons with dementia from participating in ethically approved research. Our recommendations seek to advance the national decision-making principles recommended by the Australian Law Reform Commission, which emphasize the rights of all adults to make their own decisions and for those with impaired capacity to have access to appropriate supports to help them make decisions that affect their lives. (shrink)

BackgroundApproximately 7% of the general population is affected by an orphan disease, which, in the United States, is defined as affecting fewer than 1 in 1500 people. Disease awareness is often low and time-to-diagnosis delayed. Different legislations worldwide have created incentives for pharmaceutical companies to develop drugs for orphan diseases. A journalistic article in Bloomberg Businessweek has claimed that pharmaceutical companies have tried marketing orphan drugs by placing a specific disease into the popular television series “House, M.D.” which features diagnostic (...) journeys and was produced between 2004 and 2012. This study aimed to describe the presentation of orphan diseases in the television series “House, M.D.”, to test in an exploratory fashion the hypothesis that treatable orphan conditions are overrepresented in “House, M.D.” and to discuss whether such marketing practices may or may not be ethical.MethodsA list of all medical cases depicted in the television series “House, M.D.” was obtained and classified as orphan or non-orphan according to the Orphanet database. The ratios of orphan diseases among all diseases, such with an orphan drug designation and such with an orphan drug approval by the FDA were then compared with conservative approximations of real world conditions (chi-squared tests for equality of proportions). STROBE criteria were respected.ResultsOut of a total of n = 181 different medical diagnoses, n = 42 (23.2%) were orphan diseases. The difference in percentages in between “House, M.D.” and reality was not statistically significant for orphan diseases overall (p = 0.96), yet was statistically significantly higher for both orphan diseases with one or more orphan drug designations (p = 0.0192) and such with one or more approved orphan drugs (p < 0.0001).ConclusionsOrphan diseases with a designated and/or approved orphan drug were overrepresented in the television series “House, M.D.” with statistical significance while orphan diseases overall were not. This may be explained by (so far) undocumented efforts of pharmaceutical companies to place their orphan drugs in the television series, as described in the article in Bloomberg Businessweek. Further research is needed into marketing practices in popular and emerging media formats. (shrink)

This article traces the development and growth of health justice partnerships (HJPs) in three countries: the United States, Australia and the United Kingdom.

Cet article considère les concepts de la confession et de la parrêsia dans l’oeuvre de Michel Foucault et les applique à l’analyse de la construction du sujet femme. Il montre comment dans une perspective confessionnelle, la femme entretiendrait un rapport à ellemême et aux autres qui tend à un auto-assujettissement selon des catégories normatives essentialistes. À ce dire-vrai confessionnel, j’oppose le dire-vrai parrèsiastique, en m’interrogeant sur la possibilité d’attribuer un rôle émancipateur à l’identité « femme ». La parrêsia devient alors (...) le modèle d’un discours critique, qui se rapproche de la critique sociale caractérisant le féminisme. Je retrouve ainsi dans l’histoire du féminisme des témoignages de ce que Foucault redécouvre chez le Grecs comme parrêsia politique, éthique et cynique. (shrink)

Cet article considère les concepts de la confession et de la parrêsia dans l’oeuvre de Michel Foucault et les applique à l’analyse de la construction du sujet femme. Il montre comment dans une perspective confessionnelle, la femme entretiendrait un rapport à ellemême et aux autres qui tend à un auto-assujettissement selon des catégories normatives essentialistes. À ce dire-vrai confessionnel, j’oppose le dire-vrai parrèsiastique, en m’interrogeant sur la possibilité d’attribuer un rôle émancipateur à l’identité « femme ». La parrêsia devient alors (...) le modèle d’un discours critique, qui se rapproche de la critique sociale caractérisant le féminisme. Je retrouve ainsi dans l’histoire du féminisme des témoignages de ce que Foucault redécouvre chez le Grecs comme parrêsia politique, éthique et cynique. (shrink)

The control of mRNA synthesis in the unicellular eukaryote Saccharomyces cerevisiae involves a number of promoter elements, including an upstream activation site (UAS), an RNA initiation element (RIE) and, for some genes, a form of negative element. The UAS is involved in the activation and regulation of transcription, whilst the RIE, which comprises a transcription initiation site (or I site), and often a TATA box, is responsible for the accurate positioning of the 5′ end of the mRNA. The mechanism whereby (...) these promoter elements interact involves specific protein‐DNA binding events and possibly alterations in chromatin structure. (shrink)

Deep Rivers: Selected Writings on Tamil Literature. By François Gros. Translated by M. P. Boseman. Edited by Kannan M. and Jennifer Clare. Institut Français de Pondichéry Publications Hors Série, vol. 10. Pondichéry: Institut Français de Pondichéry and Tamil Chair, Department of South and Southeast Asian Studies, University of California at Berkeley, 2009. Pp. xxxviii + 519.

An d rew Ku per begins his cri ti que of my vi ews on poverty by accepti n g the crux of my moral argument: The interests of all persons ought to count equally, and geographic location and citizenship m a ke no intrinsic differen ce to the ri gh t s and obl i ga ti ons of i n d ivi du a l s . Ku per also sets out some key facts about global poverty, for (...) example, that 30,000 children die every day from preventable illness and starvation, while most people in devel oped nati on s have plenty of disposable income that they s pend on lu x u ries and items that sati s f y mere wants, not basic needs. Yet after summarizing an essay I wrote for the New York Times Magazine in which I argued that the avera ge Am erican family should don a te a l a r ge porti on of t h eir income to or ga n i z ati ons like UNICEF and Ox f a m , Ku per wri te s : “ But if Si n ger ’s ex h ort a ti ons make you want to act immediately in the ways he recom m en d s , you s h ould not do so.” Why not? Because the approach I advoc a te “would seriously harm the poor.” These are strong words. It is startling to be told that a substantial transfer of resources from comfortably-off American families to UNICEF or Oxfam would harm the poor. What abo ut those 3 0,0 0 0 ch i l d ren dyi n g from preventable illness and starvation? In its 2001 fund-raising material,the U.S. Committee for UNICEF says that a donation of $17 will provide immunization “to protect a child for life against the six leading ch i l d - killing and maiming diseases:measles,polio. (shrink)

Rompant avec la conception traditionnelle du corps comme pure et simple res extensa en interaction avec une âme seule à même de sentir et de vouloir, laphénoménologie (E. Husserl, M. Merleau-Ponty, J. Patoèka, M. Henry, R. Barbaras,...) en déploie une approche vécue, faisant de la chair (Leib, en allemand) le site même de notre rapport sensible et pratique aux étants. Une telle perspective court cependant le risque de ne voir en l'incarnation qu'une condition de possibilité de la manifestation du monde (...) - et donc de passer sous silence la phénoménalké de cette chair vivante elle-même. C'est dans ce contexte qu'une phénoménologie du corps en émoi s'avère indispensable : au contraire du corps percevant et du corps agissant, simples mediums transparents d'une conscience tout entière auprès des choses, le corps ému, en vertu des bouleversements mêmes qui le caractérisent (larmes, rougissements, sudation,...), recouvre une prégnance certaine, et s'impose comme instance propre. En bref : seule l'émotion est somatophanie, c'est-à-dire manifestation du corps en tant que corps. Le présent volume se donne pour dessein d'étudier les différents versants de cette manifestation. La première partie, comprenant les contributions de Thomas Fuchs, Natalie Depraz, et Gabriel Mahéo, développe une réinterprétation incarnée des émotions intersubjectives - et en particulier de leur dimension politique. Au cours de la seconde partie, Charles Bobant, Grégori Jean, et Gilles A. Tiberghien s'interrogent sur la fonction-du corps ému au sein des multiples artistiques et de leurs réceptions esthétiques. Enfin, la troisième partie, composée des travaux d'Alexis Delamare, d'Aurélien Deudon, et de Daniel Vespermann, propose une série d'explorations phénoménologiques particulières - étude de la joie et de la tristesse, de lajouimance amoureuse, et des affects atmosphériques"--Page 4 of cover. (shrink)

El desarrollo de la ciencia y la tecnología y de las competencias técnicas ha impulsado el desarrollo de las sociedad haciéndolas más complejas, causando que las aptitudes emocionales se conviertan en factores de éxito, ya que afectan el desempeño humano en todos los escenarios donde se desenvuelve, no obstante a pesar de las investigaciones en este área, actualmente no se cuenta con modelos que relacionen dichas aptitudes con el rendimiento organizacional, lo cual dio origen a esta investigación que busca determinar (...) el impacto de dichas competencias en la ejecución de proyectos en la empresa ENGISERV VENEZUELA C.A. Para realizar el estudio la metodología usada considero que se trata de una investigación de campo, no experimental y transversal. La población fue de 35 expertos en proyectos y la muestra se seleccionó por el método probabilístico aleatorio simple, Concluyéndose que las competencias emocionales afectan el rendimiento de los proyectos cerca 83,4%. Palabras Clave: Inteligencia emocional, competencias emocionales, rendimiento de proyectos. Referencias [1]J. García. «Caminos de la reflexión La teoría Orteguiana de las ideas y las creencias en el contexto de la escuela de Madrid».Edición 8, España: Biblioteca Nueva 2009. [2]D. McClelland. «Testing for Competencies rather than intelligence». American Psychologist. Edicion 1, NewYork, Harvard University 1973. [3]Levy-Leboyer, Claude. «Gestión de las Competencias».Edición 1, Ediciones Gestión 2000. Barcelona, España 1997. [4]R. Bisquerra. “Educación emocional y competencias básicas para la vida”. RIE, vol 21, pp. 1, 7-43. Junio 2003. [5]R. Fragoso "Inteligencia emocional y competencias emocionales en educación superior, ¿un mismo concepto?” RIES, vol. VI, no. 16, pp.110-125. Marzo 2015. [6]J. Sánchez “La competencia emocional en la escuela: una propuesta de organización dimensional y criterial”, RFEA. vol. 25, pp. 79-96, Abril 2010”. [7]Goleman, D. «Working with emotional intelligence». Bantam. 1998. [8]M. Vivas "La educación emocional: conceptos fundamentales." RUI, vol. 4, no. 2, pp.1-21. Agosto.2003. [9]W. Pinkerton. «Project management achieving project bottom-line success», Edicion 1, Pennsylvania Mc-Graw-Hill, 2003. [10]D. Goleman. «Inteligencia emocional en la empresa» Barcelona, España. Editorial Kairós, 2018. [11]C. Michelena. «Estrategias para la elaboración de un proyecto de investigación». Caracas: Insertos Médicos de Venezuela, 2004. [12]R. Sierra. «Técnicas de Investigación Social». Buenos Aires: Editorial Paraninfo.1992. [13]P. Baptista. C. Fernández y R Hernández. “Metodología de la investigación”. México DF: McGraw–Hill.2010. [14]M. Carbonero. “Formación inicial docente y competencias emocionales”: Educ. Pesqui. vol.45. pp.3-20 Abril, 2019. [15]American Management Association. «Leading with emotional intelligence», Nueva York, AMA 2012. (shrink)

The paper outlines the theoretical and methodological complexity of the historical-philosophi- cal study of Georges Bataille’s literary and philosophical heritage, In: particular «Inner Expe- rience», one of his key works, which is about to be released in Ukrainian. To this end, I analyze the biographical and historical-philosophical contexts of writing «Inner Experience». I observe the main events of the thinker’s life, which led to the writing of this work and testify to Bataille’s opposition to the most common artistic movements of (...) the time (surrealism), philosophical theo- ries (existentialism), religious teachings, and, in fact, anti-systemic nature of his work. In addi- tion, the paper tends to identify sources of influence on the formation of philosophical views of Bataille in the period of «Inner Experience» writing. In particular, I analyze the theoretical and political relations of Bataille, especially with his critics (Belgian surrealists group, G. Marcel, J.-P. Sartre), but also allies (M. Blanchot, P. Klossowski, M. Leiris, H. Masson and others). Further, I study the genesis of the concept of «internal experience» formation, its inherent multi- faceted, multi-layered,and metaphorical nature, rooting in the tradition of Christian mysticism and reflecting the state after the loss of faith at the same time. Particularly, I study the image of the labyrinth as one of the most expressive synonyms of internal experience term, which empha- sizes the meaning of this fundamental word-concept of Bataille’s philosophy. To provide the in- tellectual context, I list main points of Bataille’s «Inner Experience» critique by representatives of the French intellectual communities of the 1940s, as well as the main Bataille’s arguments against this critique. Eventually, I analyze the main ideas of his «Inner Experience», as well as the ways how Bataille’s philosophy influenced the key representatives of the French poststruc- turalism (J. Derrida, M. Foucault, J. Kristeva, J.-F. Lyotard). (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A RETURN TO THE SUBJECT: THE THEOLOGICAL SIGNIFICANCE OF CHARLES TAYLOR'S SOURCES OF THE SELF JAMES J. BUCKLEY Loyola College Baltimore, Maryland ECENT THEOLOGIANS have widely argued (or pve-. sumed) that modernity's 1turn to the subject creates deep p11ohlems for imagining, thinking about, or enacting who we m'e. These theologians do not aJwaJ"s agree on what constitutes "modernity." And they ra11e!ly agree on the 'alternative to " the turn (...) to the :subject.'' That is, some theologians airgue or presume that the turn from the subject ought to he baiekwa:rid, retrieving our sou11ces prior to what Vatican II and others c:a:lrl "the modeTn world;" others argue o'l.' presume tha:t the turn ought be forwavd to "post-modernity," either accommodating ourseh11es to the decentered selves of the post-modern secular avant garde or proclaiming the strange, new wo1'1d of the Bible. Hut neo-Augustinians and Thomists, liberation theologians and pragmatists, Wittgensrteinians and Barthians all roughly agree (in spite of deep disagx,eements) that we need to turn from the subject;1 Charles Taylor's Sources of the Self: The Making of the Modern Identity is a massivie challenge to these presumptions and argument1s.2 It is, we might s'ay, a call to re-turn to the :subjeict-;hut quwlified this time by a gl'e3.1ter sense of this subject 'is historiml context in the Enlightenment and Romantioism 1 For a summary of critiques of different turns to the subject, see David H. Kelsey, "Human Being," in Christian Theology: An Introduction to Its Traditions and Tasks, ed. Peter C. Hodgson and Robert H. King, Second Edition (Philadelphia: Fortress Press, 1985 [Firnt Edition, 1982]), Chapter 6. 2 Charles Taylor Sources of the Sdf: The Making of the JJiodern Identity (Harvard University Press, 1989), referred to in the body of this essay by page numbers in parentheses. 497 498 JAMES J. BUCKLEY a1s weU.as this subject's constant ternptaition to undermine the very world it mak!es. A rea1der's response to the book wilil depend not only on how one rea1ds Taylor (e.g., does he under- or over-qualify his ca11 to return to Lhe subject?) but also on where the reader finds heriseilf on the tlieological spectrum. However, the fact that T.aylor',s book has been greeted with critical enthusiasm by both theologiical 'agnostics and contempomry Augustinians and Thomists suggests tha1t it is a book whose power and scope will resonabe with very different sort1s of men and women.3 My aim here is not to summarize or 1 assess the riches of this book. Soumes of the Self is a book of such clarity, power, and 1scope that lit will takce some 1 time for rea;ders (or, ak least, this reader) fo absorb it a;nd to respond :to Taylor adequateJy. My aim is much more modest, nameJy, to pursue some of the connections between Tayl:or's proposal and theology. These connections vv:i.11 suggest some chores Taylor has discoveil'ed or crea;ted for theoilogians. I rea:lize that I risk doing an injustice to a book by a philosopher, not a theologian. Tayfor is candid about hls own theologica1l convictions, while not pretending fully to ddend or evcen fully expl~ca:te those convictions. Nonetihe1ess, I wiill show tha:t his theses challenge n1any of us in ways tha:t justify a foous on theo1ogica,l isisues.Je objecition to. Tayloi; rightly speaks of the "anti-humanism of much evange[ieail rie~ ligion today," bu:t I be1ievie he is mistaken when he fails to 1.2 He carefully distinguishes neo-Nietzscheans like Lyotard, Derrida, and even Foucault, from Nietzsche himself, who had a kind of "saving inconsistency " (489) in his simultaneous affirmation and denial of a " sense of the magnificent, of the categorically affi.rmable, of the infinitely worthy of love " (453). ON CHARLES TAYLOR 509 qualify lthis "murch" and also when he caMs "figures like Cardina1l Ra:tzinger" anti-humanistic (318). He!thinks that abortion debrutes a're not so murch deep disagreements as they are exceptionail disagreements that only provie h0:w suhs1tantial our agreements are (515). But Taylor... (shrink)

Les douze articles ici rassemblés entrent dans la série de ce que j'appelle, pensant à Schubert, mes 'impromptus' : des textes brefs, résolument subjectifs, écrits 'sur le champ et sans préparation' (comme dit le Dictionnaire de Littré), qui s'adressent au grand public et sont le plus souvent, malgré l'éventuelle légèreté de l'écriture, d'une tonalité quelque peu grave ou mélancolique. C'est encore le cas dans ce recueil, et d'autant plus, s'agissant de ce dernier point, que la plupart de ces minuscules essais (...) (pour reprendre cette fois le mot de Montaigne) portent sur des sujets en effet sombres ou douloureux : le pessimisme, le tragique, la mort des enfants, le handicap, l'agonie, le bagne, le suicide... J'ose croire qu'ils ne seront pas pour autant cause de tristesse, mais aideront plutôt à accepter, aussi joyeusement que possible, la part en toute vie de deuil, de chagrin ou de détresse. C'est la joie qui est bonne, mais d'autant plus méritoire et belle qu'elle est souvent difficile. Quant au dernier texte ('Maman'), qui est sans doute ce que j'ai publié de plus intime, il ne doit d'exister qu'aux lecteurs (et plus souvent aux lectrices) qui m'ont expressément demandé de l'écrire. Qu'ils en soient remerciés."--Page 4 of cover. (shrink)

In this study, we examine the problem of belief revision, defined as deciding whic h of several initially-accepted sentences to disbelieve, when new information presents a l ogical inconsistency with the initial set. In the first three experiments, the initial sentence set included a conditional sentence, a non-conditional sentence, and an inferred conclusi on drawn from the first two. The new information contradicted the inferred conclusion. Results indicated that the conditional sentences were more readily abandoned than non-c onditional sentences, even (...) when either choice would lead to a consistent belief state, and that this preference was more pronounced when problems used natural language cover sto ries rather than symbols. The pattern of belief revision choices differed depending on whe ther the contradicted conclusion from the initial belief set had been a modus ponens or m odus tollens inference. Two additional experiments examined alternative model-theoretic definitions of minimal change to a belief state, using problems that contained multiple mo dels of the initial belief state and of the new information that provided the contradiction. The results indicated that people did not follow any of four formal definitions of minimal change on these problems. The new information and the contradiction it offered was not, for example, used to select a particular model of the initial belief state as a way of reconci ling the contradiction. The preferred revision was to retain only those initial sentences th at had the same, unambiguous truth value within and across both the initial and new info rmation sets. The study and results are presented in the context of certain logic-based for malizations of belief revision, syntactic and model-theoretic representations of belief stat es, and performance models of human deduction. Principles by which some types of sent ences might be more "entrenched" than others in the face of contradiction are also discuss ed from the perspective of induction and theory revision. (shrink)

Of the many problems of history and culture, the problem of correct understanding and interpretation of universal symbols, as well as their wise use, is very relevant. Since the subject of the study is not individual symbols, and not even symbolic systems, but the outlook component of the transformation of symbols, in the field of research is the interaction of culture and its creator - a person whose change of position leads to a change in the interpretation of symbols, and (...) therefore changes in the symbolism. The main task of the article is to understand the phenomenon of the symbol and its transformation in a single structure of history and culture. (shrink)

The usual definition of (non-contextual) hidden variables is found to be too restrictive, in the sense that, according to it, even some classical systems do not admit hidden variables. A more general concept is introduced and the term “approximate hidden variables” is used for it. This new concept avoids the aforementioned problems, since all classical systems admit approximate hidden variables. Standard quantum systems do not admit approximate hidden variables, unless the corresponding Hilbert space is 2-dimensional. However, an appropriate non-standard quantum (...) system, which arises by focussing on momentum and position and neglecting the remaining observables, admits approximate hidden variables. Systems associated with JBW-algebras (resp. von Neumann algebras) and satisfying some mild conditions admit approximate hidden variables iff they are classical, that is, iff the corresponding JBW-algebra (resp. von Neumann algebra) is associative (resp. commutative). (shrink)