BackgroundThe past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses (...) as well as important areas for further research.MethodsThis paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013. The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews.ResultsKey themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data.ConclusionsWhilst the results indicate widespread public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy. (shrink)

There is an urgent need to understand how private and public organisations can play a role in promoting human values such as fairness, dignity, respect and care. Globalisation, technological advance and climate change are changing work, organisations and systems in ways which foster inequality, alienation and collective risk. Against this backdrop, organisations are being urged to make their contribution to the common good, take account of the interests of multiple stakeholders, and respond ethically as well as efficiently to complex challenges (...) which transcend traditional organisational and state boundaries. Ethics, Meaningfulness, and Mutuality poses critical questions related to organisational design by challenging limits to current thinking, such as the neglect by political philosophers of markets, firms and stakeholders, or by organisational theorists of business ethics. In so doing, the book advances our understanding of the theory and practice of ethical organising. Specifically, meaningfulness and mutuality will be used to yield values and principles for a philosophy of ethical organising which includes an account of human values in morally desirable collective action, and examines the relationship of collective action to the contested concept of shared value creation. Within a philosophy of ethical organising, mutuality permits an examination of the unavoidable relational nature of collective action, whereas meaningfulness addresses fundamental human concerns for significance and leading a life we have reason to value. By addressing our status as relational beings with human needs for meaning, a philosophy of ethical organising brings critical thinking to the creation of morally informed organisational practices which are not only instrumentally beneficial for addressing wicked problems, but are normatively desirable for human flourishing. (shrink)

While reviewing relevant recent research, it becomes apparent that cognitive approaches have been rejected and excluded from Critical Discourse Analysis by many scholars out of often unjustified reasons. This article argues, in contrast, that studies in CDA would gain significantly through integrating insights from socio-cognitive theories into their framework. Examples from my own research into the comprehension and comprehensibility of news broadcasts, Internet discussion boards as well as into discourse and discrimination illustrate this position. However, I also argue that there (...) are salient limits to cognitive theories which have to be taken into account, specifically when proposing social change via rational/cognitive insights. Examples from recent political debates on immigration and from the election campaign in the US in 2004 serve to emphasize these arguments. (shrink)

Research has downplayed the complex discursive processes and practices through which decisions are constructed and blurs the relationship between macro- and micro-levels. The article argues for a critical and ecologically valid approach that articulates how discursive practices are influenced by, and in turn shape, the organizational settings in which they occur. It makes a methodological contribution using decision-making episodes of a senior management team meeting of a multinational company to demonstrate the insights that can be obtained from embedding the Discourse-Historical (...) Approach to Critical Discourse Analysis within a longitudinal ethnography. The approach illuminates the latent and intricate power dynamics and range of potentials of agents, triangulating micro-level discursive strategies with macro-level historical sources and background knowledge on the social and political fields. The article also makes a theoretical contribution by demonstrating the dependency of decision outcomes on often unpredictable and subtle changes in the power—context relationship. (shrink)

Despite the considerable body of scholarship and practice on interconnected systems of dominance and its effects on women in different social locations, Chicanas remain “outside the frame” of mainstream academic feminist dialogues. This article provides an overview of the contributions of Chicana intersectional thought, research, and activism. We highlight four major scholarly areas of contribution: borders, identities, institutional inequalities, and praxis. Although not a full mapping of the Chicana/latina presence in intersectionality, it proffers the distinctive features and themes defining the (...) intersectional terrain of Chicana feminism. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Suitors' GamesRuth ScodelScholars disagree about the goals of Penelope's suitors in the Odyssey-do they seek kingship, Odysseus' property, Penelope herself, or some combination? This disagreement is unsurprising: different passages imply different goals. Twice the suitors speak of dividing Odysseus' property (2.335-36, 16.384-86). In other passages, however, the kingship seems to be at issue; so Telemachus says that Eurymachus "is most eager to marry my mother and possess the (...) honor [geras] of Odysseus" (15.521-22)-which would seem to imply that he would have all Odysseus' wealth as well. Other passages stress the suitors' sexual desire for Penelope (1.365-66, 18.212-13). Hence scholars have often emphasized one aspect of the suitors' aims. Some think that Penelope herself is a mere excuse and the suitors' real desire is kingship in Ithaca.1 Others argue that Penelope is the only object and that "kingship" does not even exist.2 Many believe that Penelope and the kingship are somehow connected, and that the suitors seek both, while some admit that they are perplexed.3 The poet's failure to clarify Penelope's motives complicates the issue even further and has led to even more debate. Is she as loyal to [End Page 307] Odysseus as the poet claims? If so, why has she led the suitors on? Why does she appear before them in book 18? Why does she choose to hold the bow contest when there are so many indications of Odysseus' imminent return?4Scholars, however, have made the problems worse by assuming a single underlying situation. The suitors' actions, and those of Penelope, are easier to understand if we follow the narrative with the expectation that the characters adapt to changing situations. There are three basic situations in the poem, and so three "games." The first we must reconstruct, because Telemachus' new assertiveness ends it as the poem starts. His declaration of hostility toward the suitors and his attempt to use the assembly against them mark the transition to a new game. This game, too, fails to achieve an outcome, when the suitors fail to kill Telemachus on his return and an omen warns them against trying again. The third game begins when Penelope's appearance before the suitors inflames their desire for her and leads to the bow contest.I borrow the term "game" from the game theory widely used in the social sciences.5 In game theory, a "game" is a rule-governed situation in which each person must make choices in the knowledge that other people are also choosing and that the outcome depends in a prescribed way on all the choices. Game theory assumes "instrumental rationality": without considering why people want what they want, it assumes that people have preferences and use rational means to achieve them.6 Ends do not need to be rational, but means do. A rigorous application of game theory to a literary text would be foolishly reductive. Furthermore, game theory would require assigning a quantitative value to each possible outcome for each player. Still, a perspective influenced by game theory can clarify what strategies are available to the characters and the rationality or lack of rationality of their choices. [End Page 308]This argument treats the characters as possible people for whom the audience infers rational motives, provided that the narrator does not provide other motivations and such inferences offer an adequate explanation for otherwise confusing actions. This is the easiest way to discuss the narrative sequence, and it is not an inappropriate procedure for the authorial audience of this poem.7 After all, the Odyssey celebrates the cleverest of heroes and implies that Odysseus' wife resembles him. Without imagining people who calculate quite as tidily as the analysis does, we may still see them as consciously evaluating their options. However, even interpreters who reject the view of the characters as rational choosers may find this analysis helpful. They may, for example, see the characters as behaving more intuitively than through calculation yet still find it useful to examine how far their actions conform to a rational model. Even if the characters' motives are bracketed, this discussion seeks to... (shrink)

This article examines the excitement that Adam Smith's Theory of Moral Sentiments generated in France during the French Revolution, focusing particularly on the writings of political theorists, participants and commentators such as the abbé Sieyès, Pierre-Louis Rœderer, the Marquis de Condorcet and Sophie de Grouchy Condorcet, who were dismayed at their political opponents’ use of Rousseau, and looked to Smith for an understanding of the passions that was compatible with democratic sovereignty and representative government. In the political context of the (...) early 1790s, clarifying the concept of natural sociability, which Rousseau had rejected, but Smith and Helvétius, in different ways, each regarded as indispensible to a society dependent on advanced division of labour, became a central concern in the public lectures delivered by Pierre-Louis Rœderer as the Terror took hold. ☆ My thanks to Emma Rothschild, Michael Sonenscher, Brian Young and other participants in the History of Political Thought Seminar, Oxford, and The Hexagonal Forum, Cambridge, where earlier versions of this paper were presented and helpfully discussed. I’m also grateful for comments on an earlier draft from Carolina Armenteros, Clare Jackson, Duncan Kelly, Michael Sonenscher and Richard Whatmore. (shrink)

El éxodo de más de 5.6 millones de venezolanos representa un fenómeno migratorio con múltiples facetas, cada una merecedora de atento análisis y profundización. Ante la dimensión del movimiento de millones de seres humanos, se corre el riesgo de subestimar tragedias que ocurren dentro del drama migratorio. Una de ellas, es el exilio de científicos y académicos. Este libro resume la vision acerca de la inaccion de la sociedad y orden mundial hacia la perdida de talento academico. Es un trabajo (...) continuado de 4 anos que pretende mostrar que esta banalidad no es nueva. A traves de la historia, los ojos inmoviles del mundo han visto repetirse el mismo escenario: Italia, Espana, Siria, Yemen, Afganistan entre otros tantos han sufrido impotentes la desaparicion de sus talentos pensantes en distitnos periodos historicos. Venezuela se ha sumado recientemente a esta lista. En las siguientes paginas intento resumir a la mirada publica la imperiosa necesidad de preservar y proteger el talento academico. Resumidamente, abordo tres ejes temáticos: 1) Causas y consecuencias de la Ciencia en Riesgo, 2) Instrumentalización de la Ciencia en Riesgo y 3) Efectividad de programas dirigidos a científicos en riesgo. El primer eje temático, está fundamentado en analizar las causas y consecuencias de la Diáspora científica venezolana, bajo una reconstrucción histórica del exilio científico de Italia y España, para luego hacer un análisis comparativo. El segundo eje establece, desde el marco filosófico, la conveniente preservación del statu quo de la Ciencia en riesgo, a través de instrumentalización y unidimensionalidad del quehacer científico en países en vías de desarrollo por parte de programas internacionales financiados por organismos privados y gubernamentales. El tercer y último enfoque tiene como punto de partida la situación actual de la diáspora científica y la exposición de soluciones eficaces que rompan la inercia presente, enmarcando las ideas dentro de la actual crisis de la posmodernidad. (shrink)

This paper takes some steps toward defending the idea that justified choice always depends on the comparability of the alternatives. If the arguments are right, there can be no justified choice among incomparable alternatives.

In this revised edition with a new preface from the editor, leading scientists explain the nature and goals of `test tube' reproduction and genetic engineering, and their eugenic implications. In contrast to the Warnock report, the extended commentary considers the issues in the context of a social ethic rather than the individualist viewpoint.

Bioethics, Volume 35, Issue 7, Page 607-607, September 2021.

Genomics, Populations, and Society, a new volume in the Genomic and Precision Medicine in Clinical Practice series, considers the vast and thorny web of ELSI topics in genomics, from bioethics to healthcare applications, healthcare economics, genomic data management, and population dynamics. Emphasis is placed on the impact of rapid genomic advances on ethical, sociocultural and lifestyle dimensions. Healthcare and health economics topics include genomics and digital health, genome editing, and genomics and infectious disease management. Legal issues related to data ownership, (...) equity, access, probity, consent, and confidentiality are also discussed in-depth, along with sociocultural topics such as community engagement, consanguinity, and more. Here, a range of readers from researchers to clinicians, policy administrators, lawyers, economists and social scientists will discover carefully crafted, synthesized discussions on ELSI topics in genomics to power new scientific advances and genomic medicine implementation. (shrink)

This chapter contains sections titled: Promise and Disappointment Ethical Issues Resource Allocation References.