Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

La solidarité n'est ni assurance ni assistance. Elle ne divise pas le monde entre ceux qui donneraient sans recevoir et ceux qui recevraient sans avoir rien à donner : tous contribuent selon leurs capacités et reçoivent selon leurs besoins. Le droit européen a récemment hissé la solidarité au rang de principe fondamental, à l'instar de la liberté, de l'égalité et de la justice. Dans le même temps, l'idéologie libérale en promeut le démantèlement méthodique, considérant qu'une «grande société» fondée sur l'ordre (...) du Marché «n'a que faire de la «solidarit黫 (F Hayek). La question se pose donc de savoir si la solidarité est le témoin provisoire d'un ordre juridique condamné à disparaître ou bien l'un des ferments de sa recomposition. L'enquête conduite dans ce livre vise à y répondre. Elle commence par retracer l'histoire du concept de «solidarité», depuis son apparition en droit romain jusqu'à sa moderne diffusion en biologie, en sociologie et en droit social. Elle se poursuit en examinant cette notion d'origine européenne au prisme d'autres civilisations. Explorant les évolutions politiques et législatives les plus récentes, elle met enfin en évidence l'extrême actualité du principe de solidarité dans toutes les grandes régions du monde. (shrink)

This article addresses the research question: “How do Dutch highly educated Muslim women of Moroccan descent use prayer in dealing with problems?” The theoretical framework was mainly based on the work of Pargament et al. regarding religious coping. The empirical part of the study consisted of a quantitative and a qualitative part. This article presents results of the quantitative part. For the quantitative part of our research, 177 questionnaires were collected using snowball sampling. We asked respondents about their praying practices (...) and their ways of religious coping, using the Brief RCOPE. The connection and communication in their prayer with a loving, caring, benevolent God is the main religious way in which these Muslim women of Moroccan descent cope with all kinds of problems. This use of prayer as a way of coping can be clarified through the psychological functions of religiosity and prayer that are suggested by Pargament, Koenig, and Perez. Prayer could help them in: finding meaning, being master over their circumstances and controlling their emotions, finding comfort and closeness to God, experiencing intimacy with others and closeness to God, and transforming their way of life. We did find few negative religious coping strategies, such as negative feelings towards God or alienation. This is in line with research results of Abu Raiya and Pargament. As Islam implies surrender to God, it may be difficult for Muslims to admit their religious distress, doubts, and struggles. (shrink)

Cook (1995) criticizes the work of Jacobs and Kosslyn (1994) on spatial relations, shape representations, and receptive fields in neural network models on the grounds that first‐order correlations between input and output unit activities can explain the results. We reply briefly to Cook's arguments here (and in Kosslyn, Chabris, Marsolek, Jacobs & Koenig, 1995) and discuss how new simulations can confirm the importance of receptive field size as a crucial variable in the encoding of categorical and coordinate spatial relations (...) and the corresponding shape representations; such simulations would testify to the computational distinction between the different types of representations. (shrink)

In this groundbreaking work, French legal scholar Alain Supiot examines the relationship of society to legal discourse. He argues that the law is how justice is implmented in secular society, but it is not simply a technique to be manipulated at will: it is also an expression of the core beliefs of the West. We must recognize its universalizing, dogmatic nature and become receptive to other interpretations from non-Western cultures to help us avoid the clash of civilizations. In Homo (...) Juridicus, Supiot deconstructs the illusion of a world that has become flat and undifferentiated, regulated only by supposed "laws" of science and the economy, and peopled by contract-makers driven only by the calculation of their individual interests. Such a liberal perspective is nothing but the flipside of the notion of the withering away of law and the state, promoted this time not under the banner of the struggle between classes, but rather in the name of the free competition between sovereign individuals. Supiot's exploration of the development of the legal subject-the individual as formed through a dense web of contracts and laws-is set to become a classic work of social theory. (shrink)

"Et toutes ces belles idées sur la liberté, elles sont appliquées quelque part? - Ensemble, non. Mais par petits bouts, oui. Enfin, je crois. - Hé bien, tu n'as qu'à aller voir." C'est ainsi que je fus arraché à la torpeur de ma bibliothèque. Depuis lors, je voyage à travers le monde avec une ambition simple : étudier les thèmes de philosophie politique qui me sont chers là où ils sont mis en oeuvre. Faire apparaître derrière les concepts des histoires, (...) des visages. Pour comprendre la tolérance religieuse, j'ai parcouru le Kerala, en Inde, où les grands monothéismes coexistent depuis la nuit des temps. Pour me faire une opinion sur le libre-échange, j'ai suivi dans son quotidien le directeur de l'Organisation mondiale du commerce. Pour tester la libéralisation des drogues, j'ai côtoyé les entrepreneurs de la marijuana au Colorado. Pour mieux saisir les enjeux du revenu universel, j'ai enquêté dans les villages brésiliens où il est expérimenté. Pour apprécier la réalité du micro-crédit, j'ai sillonné les bidonvilles de Lima. Et pour m'assurer des vertus de la liberté, j'ai rencontré ceux qui en sont privés, dans les "prisons ouvertes" finlandaises. Chemin faisant, j'ai perdu certains préjugés, découvert de nouvelles idées, croisé des auteurs insoupçonnés. Et j'ai acquis une conviction : les problèmes posés par la liberté se résolvent par... davantage de liberté. G.K. (shrink)

ABSTRACTFrom its origins in antiquity to the emergence of neoliberalism, democracy had always been thought of as a fragile institutional construct, comprising two complementary dimensions: an objective dimension, and a subjective one. Appeared in the 1970s, the Law and economic doctrine has undermined this bases of democracy by assimilating the enactment of laws to negotiation on a market, and reducing democracy to a ‘market of ideas’. The specific status of speech in the democratic area fades out, paving the way for (...) ‘post-truth politics’ and ‘democratic dictatorships’. (shrink)

Le problème de notre temps n'est pas de choisir entre globalisation et repliement identitaire : on ne peut ignorer ni la diversité des pays, ni leur interdépendance croissante face aux périls écologiques et sociaux qui les affectent tous. La langue française permet de dépasser ce faux dilemme avec la distinction qu'elle autorise entre globalisation et mondialisation. Globaliser, c'est oeuvrer au règne du Marché, de la croissance illimitée, de la flexibilisation du travail et de l'hégémonisme culturel. Mondialiser consiste à établir un (...) ordre mondial respectueux de notre écoumène, du travail humain et de la diversité des peuples et des cultures. Le présent ouvrage explore cette perspective à la lumière de l'oeuvre visionnaire de Simone Weil. Il revisite ses réflexions sur l'enracinement, la liberté et l'oppression, pour penser tour à tour notre "milieu vital" (dont la destruction s'accélère aujourd'hui), le concert des civilisations, les conditions d'un travail non servile, ainsi que les bons et mauvais usages du droit. (shrink)

Psychologists have emphasized children's acquisition of information through firsthand observation. However, many beliefs are acquired from others' testimony. In two experiments, most 4yearolds displayed sceptical trust in testimony. Having heard informants' accurate or inaccurate testimony, they anticipated that informants would continue to display such differential accuracy and they trusted the hitherto reliable informant. Yet they ignored the testimony of the reliable informant if it conflicted with what they themselves had seen. By contrast, threeyearolds were less selective in trusting a reliable (...) informant. Thus, young children check testimony against their own experience and increasingly recognise that some informants are more trustworthy than others. (shrink)

The psychological and neurobiological processes underlying moral judgement have been the focus of many recent empirical studies1–11. Of central interest is whether emotions play a causal role in moral judgement, and, in parallel, how emotion-related areas of the brain contribute to moral judgement. Here we show that six patients with focal bilateral damage to the ventromedial prefrontal cortex (VMPC), a brain region necessary for the normal generation of emotions and, in particular, social emotions12–14, produce an abnor- mally ‘utilitarian’ pattern of (...) judgements on moral dilemmas that pit compelling considerations of aggregate welfare against highly emotionally aversive behaviours (for example, having to sacrifice one person’s life to save a number of other lives)7,8. In contrast, the VMPC patients’ judgements were normal in other classes of moral dilemmas. These findings indicate that, for a selective set of moral dilemmas, the VMPC is critical for normal judgements of right and wrong. The findings support a necessary role for emotion in the generation of those judgements. (shrink)

Can there be a global demos? The current debate about this topic is divided between two opposing camps: the “pessimist” or “impossibilist” camp, which holds that the emergence of a global demos is either conceptually or empirically impossible, and the “optimist” or “possibilist” camp, which holds that the emergence of a global demos is conceptually as well as empirically possible and an embryonic version of it already exists. However, the two camps agree neither on a common working definition of a (...) global demos, nor on the relevant empirical facts, so it is difficult to reconcile their conflicting outlooks. We seek to move the debate beyond this stalemate. We argue that existing conceptions of a demos are ill-suited for capturing what kind of a global demos is needed to facilitate good global governance, and we propose a new conception of a demos that is better suited for this purpose. We suggest that some of the most prominent conceptions of a demos have focused too much on who the members of a demos are and too little on what functional characteristics the demos must have in order to perform its role in facilitating governance within the relevant domain. Our new proposal shifts the emphasis from the first, “compositional” question to the second, “performative” one, and provides a more “agency-based” account of a global demos. The key criterion that a collection of individuals must meet in order to qualify as a demos is that it is not merely demarcated by an appropriate membership criterion, but that it can be organized, democratically, so as to function as a state-like agent. Compared to the existing, predominantly “compositional” approaches to thinking about the demos, this agency-based approach puts us into a much better position to assess the empirical prospects for the emergence of a global demos that can facilitate good global governance. (shrink)

A basic assumption in current western medicine is that good healthcare involves informed choices. Indeed, making informed choices is not only viewed as “good practice” but a right to which each individual is entitled, a perspective only recently developed in the medical field.Moreover, in the case of ethical decisions, much of the discussion on the role of the family is cast within the autonomy paradigm of contemporary bioethics; that is, family members provide emotional support but do not make decisions for (...) the competent adult patient. The family Is uniformly viewed as an Important proxy decision maker for incompetent patients; but most bioethicists would eschew any decision-making role for the family of mentally competent adult patients. Underlying the discussion of autonomy is the basic assumption in western medicine that good healthcare Involves choices by Informed individuals. (shrink)

Classification of sciences; Moslem scholars; Africa, North.

Cosmopolitics, the concept of a world politics based on shared democratic values, is in an increasingly fragile state.

Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual’s genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant’s genetic results, since prevailing US practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics – in which genetic information, privacy, and autonomy are considered to be familial – (...) endorsed in UK genomic medicine and by participants in a multi-method study of US research participants presented here. The dilemma reflects a conflict between US legal and ethical frameworks that privilege “the individual” and exclude “the family” versus actual human genetics that are simultaneously individual and familial. Can human genetics succeed in challenging bioethics’ hegemonic individualism to recognize and place the family at the center of the room where bioethics happens? (shrink)

As we look to the future in a world with porous borders and boundaries transgressed by technologies, an inevitable question is:Can there be a single, global bioethics? Intimately intertwined with this question is a second one: How might a global bioethics account for profound - and constantly transforming - sources of cultural difference? Can a uniform, global bioethics be relevant cross-culturally? These are not simple questions, rather, a multi-dimensional answer is required. It is important to distinguish between two meanings of (...) bioethics: the academic discipline of bioethics as opposed to bioethics as a set of practices governing clinical care and scientific research. There is growing evidence to support the notion of a shared global understanding of bioethics as a field of inquiry focused on the moral dimensions of science and biomedicine. (shrink)

As we look to the future in a world with porous borders and boundaries transgressed by technologies, an inevitable question is:Can there be a single, global bioethics? Intimately intertwined with this question is a second one: How might a global bioethics account for profound - and constantly transforming - sources of cultural difference? Can a uniform, global bioethics be relevant cross-culturally? These are not simple questions, rather, a multi-dimensional answer is required. It is important to distinguish between two meanings of (...) bioethics: the academic discipline of bioethics as opposed to bioethics as a set of practices governing clinical care and scientific research. There is growing evidence to support the notion of a shared global understanding of bioethics as a field of inquiry focused on the moral dimensions of science and biomedicine. (shrink)

In Practicing Safe Sects F. LeRon Shults provides scientific and philosophical resources for having “the talk” about religious reproduction: where do gods come from – and what are the costs of bearing them in our culturally pluralistic, ecologically fragile environment?

What is the nature of children's trust in testimony? Is it based primarily on evidential correlations between statements and facts, as stated by Hume, or does it derive from an interest in the trustworthiness of particular speakers? In this essay, we explore these questions in an effort to understand the developmental course and cognitive bases of children's extensive reliance on testimony. Recent work shows that, from an early age, children monitor the reliability of particular informants, differentiate between those who make (...) true and false claims and keep that differential accuracy in mind when evaluating new information from these people. We argue that this selective trust is likely to involve the mentalistic appraisal of speakers rather than surface generalizations of their behavior. Finally, we review the significance of children's deference to adult authority on issues of naming and categorization. In addition to challenging a purely inductive account of trust, these and other findings reflect a potentially rich set of tools brought by children to the task of learning from people's testimony. (shrink)

Cultural difference has been largely ignored within bioethics, particularly within the end-of-life discourses and practices that have developed over the past two decades in the U.S. healthcare system. Yet how should culturebe taken into account?

Journal Name: Cognitive Linguistics Issue: Ahead of print.

The current research applied a mid-level evolutionary theory that has been successfully employed across numerous animal species—life history theory—in an attempt to understand the Dark Triad personality trait cluster (narcissism, psychopathy, and Machiavellianism). In Study 1 (N = 246), a measure of life history strategy was correlated with psychopathy, but unexpectedly with neither Machiavellianism nor narcissism. Study 2 (N = 321) replicated this overall pattern of results using longer, traditional measures of the Dark Triad traits and alternative, future-discounting indicators of (...) life history strategy (a smaller-sooner, larger-later monetary dilemma and self-reported risk-taking behaviors). Additional findings suggested two sources of shared variance across the Dark Triad traits: confidence in predicting future outcomes and openness to short-term mating. (shrink)

Paul Appelbaum and colleagues propose four models of informed consent to research that deploys whole genome sequencing and may generate incidental findings. They base their analysis on empirical data that suggests that research participants want to be offered incidental findings and on a normative consensus that researchers incur a duty to offer them. Their models will contribute to the heated policy debate about return of incidental findings. But in my view, they do not ask the foundational question, In the context (...) of genome sequencing, how much work can consent be asked to do? (shrink)

Ethics for Enemies comprises three original philosophical essays on torture, terrorism, and war. F. M. Kamm deploys ethical theory in her challenging new treatments of these most controversial practical issues. First she considers the nature of torture and the various occasions on which it could occur, in order to determine why it might be wrong to torture a wrongdoer held captive, even if this were necessary to save his victims. In the second essay she considers what makes terrorism wrong--whether it (...) is the intention to harm civilians, rather than harm to them being 'collateral damage,' or something else--and whether terrorism is always wrong. The third essay discusses whether having a right reason, in the sense of a right intention, is necessary in order for a war to be just. Kamm then examines ways in which the harms of war can be proportional to the achievement of the just cause and other goods that war can bring about, so as to make the declaration of war permissible. (shrink)

Within the growing developmental literature on children's testimonial learning, the emphasis placed on children's evaluations of testimonial evidence has shielded from view some of the more collaborative dimensions of testimonial learning. Drawing on recent philosophical work on testimony and interpersonal trust, we argue for an alternative way of conceptualizing the social nature of testimonial learning. On this alternative, some testimonial learning is the result of a jointly collaborative epistemic activity, an activity that aims at the epistemic goal of true belief, (...) but that does so by means of an irreducibly social process. (shrink)