The rapid rise of international collaborative science has enabled access to genomic data. In this article, it is argued that to move beyond mapping genomic variation to understanding its role in complex disease aetiology and treatment will require extending data sharing for the purposes of clinical research translation and implementation.

Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer (...) to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. In practice, engagement faces numerous challenges and is often time-consuming, expensive and ‘thorny’ work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, “How could it be otherwise?” ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of ‘keeping open’ the possible considerations that might emerge and including reflexive use of qualitative analytic methods. This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to ‘open up’ engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: engagement and knowledge exchange; analysis of mindmap contributions; development of a conceptual schema ; and feedback, refinement and development of recommendations. ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it. (shrink)

Aim: To improve clinical and ethical understanding of patient preferences for information and involvement in decision making.Objectives: To develop and evaluate a clinical tool to elicit these preferences and to consider the ethical issues raised.Design: A before and after study.Setting: Three UK hospices.Participants: Patients with advanced life-threatening illnesses and their doctors.Intervention: Questionnaire on information and decision-making preferences.Main outcome measures: Patient-based outcome measures were satisfaction with the amount of information given, with the way information was given, with family or carer information, (...) and confidence about future decision making. Doctor-based outcome measures were confidence in matching information to patient preference, matching family or carer communication to patient preference, knowing patient preferences and matching future decision making with patient preference.Results: Of 336 admissions, 101 patients completed the study . Patient satisfaction with the way information was given and family communication improved after introduction of the tool. Doctor confidence improved across all outcome measures .Conclusions: Patient satisfaction and doctor confidence were improved by administering the questionnaire, but complex ethical issues were raised by implementing and applying this research. The balance of ethical considerations were changed by advanced life-threatening illness, because there is increased risk of harm through delivery of information discordant with the patient’s own preferences. The importance of truly understanding patient preferences towards the end of life is highlighted by this study. (shrink)

Advances in reproductive technologies continue to present ethical problems concerning their implementation and use. These advances have preoccupied bioethicists in their bid to gauge our moral responsibilities and obligations when making reproductive decisions. The aim of this discussion is to highlight the importance of a sensibility to differences in moral perspective as part of our ethical inquiry in these matters. Its focal point is the work of John Harrisi, who has consistently addressed the ethical issues raised by advancing reproductive technologies. (...) The discussion is aimed at a central tenet of Harris’s position on reproductive decision-making—namely, that in some instances, giving birth to a worthwhile life may cause harm and will therefore be morally wrong. It attempts to spell out some of the implications of Harris’s position that the author takes to involve a misplaced generality. To support this claim, some examples are explored that demonstrate the variety of ways in which concepts may manifest themselves as moral considerations within the context of reproductive decision-making. The purpose is to demonstrate that Harris’s general conception of the moral limits of reproductive autonomy obscures the issues raised by particular cases, which in themselves may reveal important directions for our ethical inquiry. (shrink)

Reason and Value collects 15 new papers by leading contemporary philosophers on themes from the work of Joseph Raz. Raz has made major contributions in a wide range of areas, including jurisprudence, political philosophy, and the theory of practical reason; but all of his work displays a deep engagement with central themes in moral philosophy. The subtlety and power of Raz's reflections on ethical topics make his writings a fertile source for anyone working in this area. Especially significant are his (...) explorations of the connections between practical reason and the theory of value, which constitute a sustained and penetrating treatment of a set of issues at the very center of moral philosophy as it is practiced today. The contributors to the volume acknowledge the importance of Raz's contributions by engaging critically with his positions and offering independent perspectives on the topics that he has addressed. The volume aims both to honour Raz's accomplishments in the area of ethical theorizing, and to contribute to an enhanced appreciation of the significance of his work for the subject. (shrink)

Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought (...) to contribute to dialogue between ethics and the engineering community. Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants’ consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. Two overarching themes emerged: in ‘Privacy’, researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In ‘Choice’, researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of ethics as a critical partner to smart-home engineering. (shrink)

If we lack the kind of free will required for moral responsibility, what does that entail for the justification of particular punitive practices and punishment generally? Everyone seems to agree that incarceration can still be justified, and that retributive justifications of punishment will be unavailable. Beyond this, however, there is little agreement. In this article, I evaluate Derk Pereboom’s discussion of this issue in Living Without Free Will, and then articulate and defend my own positive position. In my view, significant (...) punishment can be justified on consequentialist grounds by the free will denier without betraying important concerns about justice. (shrink)

In “Bloody Mary,” a statue of the Virgin Mary is depicted as bleeding, apparently “out its ass.” The author wonders whether Parker and Stone were doing something morally wrong by using blasphemy for comic effect. The author had an intuition that some moral boundary was crossed. But, though moral philosophy can sometimes begin with intuitions, it can't end with them. A philosophy that proclaims an action moral or immoral has to be grounded in good reasons and solid evidence along with (...) intuitions. The author examines this through the lens of utilitarianism. From a utilitarian perspective, it may be that blasphemous humor is morally acceptable on grounds that it makes a lot of people happy; or, it may be immoral on grounds that it causes a lot of shock, anger, and displeasure. An important part of morality involves being concerned with the consequences of actions and refraining from hurting others pointlessly. (shrink)

In this article I will address the question of determining the moral limits of reproductive decisions. In so doing I will examine the contributions made by John Harris, who has over the years consistently addressed the ethical implications of advancing reproductive technologies. In addressing these matters, Harris has centred his arguments on the principle of harm and with this in mind has set out a specific theoretical framework from which decisions about disability and causing harm, as in the case of (...) reproductive decisions, can be rationally addressed. This discussion will attempt to question the conceptual scheme that he proposes. The aim here is not to present an alternative theoretical contribution to the morality of reproductive choice. Rather, in the attempt to follow some of the directives in Wittgenstein’s later philosophy, the aim is to demonstrate some of the pitfalls of what Wittgenstein has described as the “craving for generality” in contemporary philosophy. I propose that this craving can distort, in this instance, our ordinary usage of concepts such as harm, suffering and disability and their role in the moral vocabulary of reproductive decision making. (shrink)

In this paper the current legislative landscape and the challenges researchers face in obtaining informed consent in acute situations are explored. In such situations, some current guidelines can be difficult or impossible to apply. Capacity should be formally assessed before consent is sought to ensure that vulnerable persons are neither inappropriately recruited to a study nor denied the opportunity to participate. However, there is little guidance in current legislation as to how this should be achieved. When the patient is considered (...) to be unable to provide prospective informed consent, other forms are sometimes permissible, although all have specific drawbacks. First, it is argued that a brief instrument, suitable for the acute situation, is needed to determine whether patients have the capacity to consent to clinical trials. Secondly, it is argued that there are areas of the informed consent process that require review, and ways that improvements could be made are suggested. (shrink)

Meta chronicles the journey of Andrew Murtagh and Adam Lee in their uncommon exchange turned friendship. Why is there something rather than nothing? Does God exist? What of goodness, free will, and consciousness – what is the ultimate nature of reality and how does that extend into the public square? In this treatise, two young passionate truth seekers aim to change the way the discussion is being had from the vantage points of Christianity and atheism. Is theism or atheism (...) more compelling? If theism, why Christianity? Did Jesus even exist? After theism/atheism, then what? What is the good life? Is morality objective? What does abortion, education, and healthcare look like in the just city? Embarking on a quest for truth on the big questions, their worldviews clash in a philosophical tour de force. In their discord, a blossoming friendship; in their agreement, vows to change the world…. (shrink)

BackgroundEngagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an (...) ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study.MethodsParticipants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique.ResultsParticipants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study.ConclusionThe experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies. (shrink)

In this article, I propose and argue for a conception of inhuman treatment. In the human rights context, I claim, inhuman treatment is that which is grossly degrading. Relative to “cruel,” “inhumane,” and “degrading,” “inhuman” has received little attention from moral philosophers. My aim here is to analyze this concept in greater depth in order to determine what it brings to discussions about punishment and other kinds of treatment. I begin by drawing distinctions between “inhuman,” “inhumane,” and “degrading.” Then, I (...) discuss analyses of “inhuman treatment” proposed by Jeremy Waldron and John Vorhaus. Although I find both conceptions problematic, discussing each helps me to set the stage for my proposal. After articulating and arguing for my own conception, I conclude by briefly explaining some of its implications. (shrink)

Stuart Murray's 'Care and the self: biotechnology, reproduction, and the good life' utilizes Foucault's "care of the self" to examine health domains in its title. The present author discusses three important articulations of concern with the Foucauldian concepts of care of the self that are absent in the work of Murray and others: first, the voluntarism and individualism inherent in ideas about care of the self; second, the absence of the interactional and relational; and, third, the perpetuation of the interpretation (...) of Foucault's concept of governmentality, 'the conduct of conduct', as primarily coercive. (shrink)

A metaphysical strand of C. S. Peirce’s American pragmatism resonates deeply in potential alliance with “incorporeal feminism”: a transcontinental philosophy with origins in Luce Irigaray’s ethics of sexual difference. A psychoanalyst trained by Lacan himself, Irigaray analyzes the unconscious of various philosophical systems, revealing dualism as an underlying phallic structure. In the dualism between idealism and materialism, she explains, the terms become sexually coded: idealism, paternal-masculine; materialism, maternal-feminine. Incorporeal feminism does not merely invert the roles, but radically reimagines the relation (...) between them, postulating the ideal as a maternal condition of possibility for birthing the material into existence; not separate substances but the inseparable activity of materiality making itself. For Peirce, ideas act; and though he was by no means a feminist, his metaphysics lend at least three insights to incorporeal feminism: an alternative to dualism in the trichotomic categories “firstness, secondness, and thirdness”; an evolutionary cosmology where the material universe is a gestating embryo within a womb; and an objective idealism: a model for addressing the dilemma of when sexual difference begins. Within “firstness,” sexual difference is ideal; an incorporeal activity pre-existing and latently imbuing materiality to varying degrees, ultimately expressing itself in certain life-forms as bodily differences. (shrink)

Despite All Critique (2014) -- World Politics and Western Reason (1980) -- The Doubled Outsides of the Modern International (2005) -- The Subject of Security (1995) -- The Protection of Nature and the Nature of Protection (2005) -- Social Movements/World Politics (1994) -- Europe is Not Where It is Supposed to Be (2000) -- They Seek it Here, They Seek it There : Looking for Politics in Clayoquot Sound (2003) -- Violence, Modernity, Silence : From Weber to International Relations (1993) (...) -- Hobbes, Origins, Limits (2011) -- War, Terror, Judgement (2002) -- International, Imperial, Exceptional (2005) -- Which Democracy for Which Demos? (2013) -- The Political Theory of Boundaries and the Boundaries of Political Theory : Interview With Raia Prokhovnik (2012). (shrink)

This book focuses upon the perennial question of the existence and nature of an obligation to obey the law. Leading writers have, at one time or another, emphasized considerations such as gratitude, 'divine ordering, ' prudence, contract, autonomy, and utility in seeking to justify, or to deny any justification for, some sort of obligation to obey the positive law. The book provides relevant selections from a sampling of the historical approaches to legal obligation taken by writers such as Plato, Augustine, (...) Aquinas, Hobbes, Locke, Hume, Rousseau, Thoreau, Bentham, Marx and Engels, and Martin Luther King, Jr. These classical discussions are augmented by critical questions and commentary, by independent discussions of the question of legal obligation by a wide range of contemporary writers, and by relevant judicial cases discussing matters such as conscientious objection and civil disobedience. (shrink)

The concept of yinyang lies at the heart of Chinese thought and culture. The relationship between these two opposing, yet mutually dependent, forces is symbolized in the familiar black and white symbol that has become an icon in popular culture across the world. The real significance of yinyang is, however, more complex and subtle. This brilliant and comprehensive analysis by one of the leading authorities in the field captures the richness and multiplicity of the meanings and applications of yinyang, including (...) its visual presentations. Through a vast range of historical and textual sources, the book examines the scope and role of yinyang, the philosophical significance of its various layers of meanings and its relation to numerous schools and traditions within Chinese philosophy. By putting yinyang on a secure and clear philosophical footing, the book roots the concept in the original Chinese idiom, distancing it from Western assumptions, frameworks and terms, yet also seeking to connect its analysis to shared cross-cultural philosophical concerns. (shrink)

Elliot R. Wolfson intervenes in the debate over Martin Heidegger and Nazism from a unique perspective, as a scholar of Jewish mysticism and philosophy who has been profoundly influenced by Heidegger's work. He reveals crucial aspects of Heidegger's thinking that betray an affinity with dimensions of Jewish thought.

Information can be public among a group. Whether or not information is public matters, for example, for accounts of interdependent rational choice, of communication, and of joint intention. A standard analysis of public information identifies it with (some variant of) common belief. The latter notion is stipulatively defined as an infinite conjunction: for p to be commonly believed is for it to believed by all members of a group, for all members to believe that all members believe it, and so (...) forth. This analysis is often presupposed without much argument in philosophy. Theoretical entrenchment or intuitions about cases might give some traction on the question, but give little insight about why the identification holds, if it does. The strategy of this paper is to characterize a practical-normative role for information being public, and show that the only things that play that role are (variants of) common belief as stipulatively characterized. In more detail: a functional role for “taking a proposition for granted” in non-isolated decision making is characterized. I then present some minimal conditions under which such an attitude is correctly held. The key assumption links this attitude to beliefs about what is public. From minimal a priori principles, we can argue that a proposition being public among a group entails common commitment to believe among that group. Later sections explore partial converses to this result, the factivity of publicity and publicity from the perspective of outsiders to the group, and objections to the aprioricity of the result deriving from a posteriori existential presuppositions. (shrink)

Recent Work on Intrinsic Value brings together for the first time many of the most important and influential writings on the topic of intrinsic value to have appeared in the last half-century. During this period, inquiry into the nature of intrinsic value has intensified to such an extent that at the moment it is one of the hottest topics in the field of theoretical ethics. The contributions to this volume have been selected in such a way that all of the (...) fundamental questions concerning the nature of intrinsic value are treated in depth and from a variety of viewpoints. These questions include how to understand the concept of intrinsic value, what sorts of things can have intrinsic value, and how to compute intrinsic value. The editors have added an introduction that ties these questions together and places the contributions in context, and they have also provided an extensive bibliography. The result is a comprehensive, balanced, and detailed picture of current thinking about intrinsic value, one that provides an indispensable backdrop against which future writings on the topic may be assessed. (shrink)

BLWith new text and full apparatus criticus The Eudemian Ethics was one of two ethical treatises which Aristotle wrote on the subject of ethica or `matters to do with character'. Although the two works cover much the same ground, the Nicomachean Ethics is better known; the poor manuscript tradition of the Eudemian Ethics has made correct translation and interpretation of the text extremely difficult. The subject of the work is the choice of a certain means of conduct, made by a (...) `man of practical wisdom', between two extremes of behaviour: asceticism and yielding to uncontrolled impulses. Aristotle also stresses the notion of moral intention and the importance of virtue of character. This new Oxford Classical Text of the Eudemian Ethics is the result of many years of work. After Sir David Ross's death, his original text was substantially reworked and revised by his friend and colleague R. R. Walzer, who was aided in the revision by his former pupil Mrs Jean Mingay, who continued his work after his death in 1974. Mrs Mingay was fortunate in being able to make use of previously unpublished contributions from D. J. Allan after his death in the late seventies, and more recently has been helped in her work by the suggestions of Professor D. A. Russell, David Robinson, and Christopher Rowe. (shrink)

"Williams's masterful translation satisfies (at last!) a long-standing need. There are lots of good translations of Augustine's great work, but until now we have been forced to choose between those that strive to replicate in English something of the majesty and beauty of Augustine's Latin style and those that opt instead to convey the careful precision of his philosophical terminology and argumentation. Finally, Williams has succeeded in capturing both sides of Augustine's mind in a richly evocative, impeccably reliable, elegantly readable (...) presentation of one of the most impressive achievements in Western thought--Augustine's Confessions." --Scott MacDonald, Professor of Philosophy and Norma K. Regan Professor in Christian Studies, Cornell University. (shrink)

This volume gathers together for the first time are all the key texts in a crucial debate in modern philosophy, centered on Leibniz's famous 1695 essay, the "New System of the Nature of Substances and their Communication," in which he introduced his strikingly original theory of metaphysics. His "system" became increasingly famous and drew him into discussion and development of these ideas, both in public and in private, with a variety of thinkers, most notably the great French philosopher Pierre Bayle. (...) Woolhouse's and Francks's new English edition gives the only full representation of this debate, and will therefore be essential reading for anyone who wishes to gain a proper understanding of Leibniz's philosophy and its intelletual context. All the texts are newly translated and extensively annotated; many appear in English for the first time. (shrink)

The young Hegel was entranced by the notion of intellectual intuition, and this notion continues to entrance many of Hegel’ commentators. I argue that Kant provided three distinct conceptions of an intuitive intellect, that none of these involve aconceptual intuitionism, and that they differ markedly from Fichte’s and Schelling’s conceptions of intellectual intuition. I further argue that by 1804 Hegel recognized that appealing to an aconceptual model, or to Schelling’s model, or to his own early model of intellectual intuition generates (...) inevitable and insoluble problems of question-begging. By incorporating several important points from Kant’s Transcendental Ideal into his reinterpretation of Kant’s Transcendental Deduction and Refutation of Idealism, Hegel’s mature discursive and conceptual account of ‘absolute knowing’ performs some of the functions Kant assigned to the intuitive intellect, though without invoking any such intuitive intellect. I discuss several of these functions. (shrink)