Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

But still I think some account has to be given of the application of CM to tides and cannon balls etc. etc. It seems to me that Einstein's and Bohr's analysis was essentially correct: we make the connection, and thus apply the mathematical statements of CM to macroscopic features of the world about us, by constructing, within the mathematical framework,. macroscopic conglomerates of the elementary particles and fields that should have the general appearance of tides and billiard, looked at from (...) a distance, and that would respond to the probings of mathematical models of measuring devices, whose "pointers" we can see from afar, in the ways that waves and billiard balls do. I think a look at how CM has been used and applied since the time of Newton and Galileo shows that the mathematical theory is linked into our experiences of the world in this nonproblematic way, and that this correspondence at this nonproblematic level is part of classical mechanics in the broad sense in which it is understood by people who use it. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy and Rhetoric 35.1 (2002) 1-21 [Access article in PDF] Turning Kant Against the Priority of Autonomy: Communication Ethics and the Duty to Community Pat J. Gehrke Communication ethics scholars afford Immanuel Kant significantly less attention than one might expect. This may be because, as Robert Dostal notes, Kant argues that rhetoric merits no respect whatsoever (223). This rejection of rhetoric, Dostal writes, is grounded in the significant emphasis (...) given to Kant's concept of autonomy (232). The focus on autonomy and, hence, rhetoricians' relative neglect of Kant's ethical theory are both connected to the separation of Kant's Critique of Pure Reason (hereinafter CPuR) from his subsequent ethical and moral philosophy. Kenneth Burke writes that Kant's first critique has no ethical implications, "no 'wills,' 'oughts,' 'shoulds,' or 'thou shalt nots'... nothing but an inevitable is, a description of conditions as they necessarily are for human experience" (191; emphasis in original). Such readings lose much of the richness and complexity of Kant's thought and tend instead to produce simple moral duties, such as Mike Markel's assertion that technical communicators must be truthful.Perhaps the most critical element of Kant's work lost in our focus on autonomy is his articulation of a ground for a duty to community. While Kant makes clear the importance of community for his metaphysics in the first critique (CPuR), the importance of community in Kant's moral philosophy often is overlooked. Some scholars claim that an ethical duty to community is either rejected by Kant's emphasis on the autonomy of will or simply ignored. This article combines a reading of Kant's metaphysics of experience with his moral philosophy to articulate a communication ethic grounded in community. This argument is made in three parts: first, the community of objects in experience—the Third Analogy of Experience—is an organizing principle of and a necessary condition for the possibility of all experience; second, this metaphysical principle of community is relevant [End Page 1] to community as developed in Kant's ethical writings; and finally, Kant's own work undermines the primacy of autonomy and better supports a communication ethic grounded in a duty to community.Scholars interested in Jurgen Habermas's theory of communicative action have special reason to take note of Kant's work. Kant is not only a figure that Habermas sees reflected in his own work, 1 but a constant point of contrast. Craig Calhoun writes that much of Habermas's own philosophy emerges by rejecting Kant's epistemology and elements of his metaphysics while still giving credence to Kantian moral philosophy (2). However, like most communication scholars and philosophers, Habermas believes that autonomy governs Kantian ethics: "Formalistic ethics (Kant) binds the criterion of generality of norms to the further criterion of autonomy, that is, independence from contingent motives" (Habermas, Legitimation 89). Since autonomy excludes or represses the contingent, if our readings of Kant give primacy to autonomy we leave little room for any notion of community as manifest in experience. In no small part, it is the criticism of Kant for privileging autonomy that has given Habermasians their break from Kantian ethics. However, if we turn to the first critique to guide our reading of the moral philosophy, there is another way to understand the role of autonomy and community in Kant's thought. By linking Kant's metaphysics with his moral philosophy, this article turns Kant away from the primacy of autonomy and uses Kant's own works to argue that autonomy is but one half of an antinomy that is organized under the principle of community. Thus, this article recuperates the possibility of deploying Kantian metaphysics and moral philosophy together as grounds for a communication ethic that privileges community and recovers the value of rhetoric.For rhetorical scholars, the resistance to the priority of autonomy may be related to the frequent expression of community through appeal to commonality, sameness, or identification. Today, feminist, race, postmodern, and poststructural communication scholars are questioning the value of commonality as a ground for ethics (e... (shrink)

Pat White, John White; David Cooper's Illusions, Journal of Philosophy of Education, Volume 14, Issue 2, 30 May 2006, Pages 239–248, https://doi.org/10.1111/j.1.

Pat White; Work-place Democracy and Political Education [1], Journal of Philosophy of Education, Volume 13, Issue 1, 30 May 2006, Pages 5–20, https://doi.org/10.

Critical analysis of the commercialization and malpractice current in the profession of medicine.

The importance of ethical consumerism to many companies worldwide has increased dramatically in recent years. Ethical consumerism encompasses the importance of non-traditional and social components of a company's products and business process to strategic success - such as environmental protectionism, child labor practices and so on. The present paper utilizes a random utility theoretic experimental design to provide estimates of the relative value selected consumers place on the social features of products.

Nearly all studies of consumers’ willingness to engage in ethical or socially responsible purchasing behavior is based on unconstrained survey response methods. In the present article we ask the question of how well does asking consumers the extent to which they care about a specific social or ethical issue relate to how they would behave in a more constrained environment where there is no socially acceptable response. The results of a comparison between traditional survey questions of “intention to purchase” and (...) estimates of individuals willingness-to-pay for social attributes in products reveal that simple survey questions are too “noisy” to provide operationally meaningful information and overstate intentions to a considerable extent. (shrink)

Phenomenology has contributed to healthcare by providing resources for understanding the lived experience of the patient and their situation. But within a burgeoning literature on the characteristic features of illness, there has not yet been an account appropriate to describe congenital illnesses: conditions which are present from birth and cause suffering or medical threat to their bearers. Congenital illness sits uncomfortably with standard accounts in phenomenology of illness, in which concepts such as loss, doubt, alienation and unhomelikeness presuppose prior health. (...) These accounts reflect, in different ways, Maurice Merleau-Ponty’s assumption that the ways of living of the ill contain allusions to fundamental, healthy functions. The originality of congenital illness complicates this assumption and demands its own original phenomenology. In this paper, I sketch my personal experience living with a single-ventricle heart condition. While some of this story may reflect my own idiosyncratic experience, I hope that much of it will resonate with the congenital illness experience. I argue that the phenomenological literature on illness, grounded in the notion of loss, does not describe the congenital illness experience. I show how a number of other patient-centred theories of health and illness which have been influential on phenomenology can and cannot elucidate congenital illness. In particular, I consider Georges Canguilhem’s account of the normal and the pathological; debates in disability; and the notion of illness as biographical disruption. I show that congenital illness results in the preadmission of its patients to a paradoxical logic of medical palliation, one product of which is existential maturity. (shrink)

This peer commentary opens with setting the context for decisions on the edge of viability through an autoethnographic account (Bochner and Ellis 2016) of the author’s experience of such a situatio...

... The purpose of this paper is to try to clarify the extent to which consumers “value” ethical product features when making purchases by utilizing a distinctive methodology – structured choice experiments ( Louviere et al., 2000) – that What Will Consumers Pay ... Jordan J. Louviere ... \n.

In this paper, I review two related lines of computational research: discovery of scientific knowledge and causal models of scientific phenomena. I also report research on quantitative process models that falls at the intersection of these two themes. This framework represents models as a set of interacting processes, each with associated differential equations that express influences among variables. Simulating such a quantitative process model produces trajectories for variables over time that one can compare to observations. Background knowledge about candidate processes (...) enables search through the space of model structures and associated parameters to find explanations of time-series data. I discuss the representation of such process models, their use for prediction and explanation, and their discovery through heuristic search, along with their interpretation as causal accounts of dynamic behavior. (shrink)

Pat White; Education, Democracy and the Public Interest, Journal of Philosophy of Education, Volume 5, Issue 1, 30 May 2006, Pages 7–28, https://doi.org/10.1111.

Any panpsychism building complex consciousness out of basic atoms of consciousness needs a theory of ‘mental chemistry’ explaining how this building works. This paper argues that split-brain patients show actual mental chemistry or at least give reasons for thinking it possible. The paper next develops constraints on theories of mental chemistry. It then puts forward models satisfying these constraints. The paper understands mental chemistry as a transformation consistent with conservation of consciousness rather than an aggregation perhaps followed by the creation (...) of something in addition. The paper suggests that this kind of mental chemistry alone yields a workable panpsychism. (shrink)

Because psychiatry deals specifically with ‘mental’ suffering, its efforts are always centrally involved with the meaningful world of human reality. As such, it sits at the interface of a number of discourses: genetics and neuroscience, psychology and sociology, anthropology, philosophy, and the humanities. Each of these provides frameworks, concepts, and examples that seek to assist our attempts to understand mental distress and how it might be helped. However, these discourses work with different assumptions, methodologies, values, and priorities. Some are in (...) dispute with one another. At various times in the history of psychiatry, a particular form of understanding has become dominant and worked to marginalize .. (shrink)

On the concept of Jagannātha, Hindu deity.

Nowhere is current controversy over biological explanations for human behaviour more striking than in debates over violence. New theories are being formulated, and biological markers are being identified in new ways. The terms of discourse and debate are being changed. Violence may be represented as a pathological biological syndrome, or as natural, especially for men. Why the growing interest now in biological explanations of violence? Is the biology of violence suggestive of a new brand of biological determinism? This latter, broader (...) question poses a challenge to the argument that current biological theories of behaviour are different and better than faulty, often racist and eugenicist, theories which have gone before. New theories do not reduce to linear cause-and-effect explanations, and there are no `genes for crime'. Nevertheless, there is a question of geneticism, `the doctrine of the primacy of the genetic make-up in determining every aspect of the human mind, constitution and social behaviour...' (Medawar, 1984: 255). (shrink)

There would seem to be a great deal of confusion and misunderstanding in the public mind about the life stance of modern humanism and its philosophical underpinnings. As a committed humanist Pat Duffy Hutcheon has made many invaluable contributions to the clarification of the nature and origin of evolutionary naturalism as a necessary component of modern humanism. This collection of topical essays is the most recent addition to her ongoing pursuit, following her analysis of cultural development in Building Character and (...) Culture (Westport, CT: Praeger, 1999) and her earlier seminal work tracing the evolution of the naturalistic basis of social-scientific thought in Leaving the Cave (Waterloo, ON: Wilfrid Laurier University Press, 1996). This, her newest book presents the ideas in the context of their time, of some of the most prominent thinkers who have, in one way or another, shaped the evolving philosophy of humanism over the centuries. It is a much needed and most welcome resource for any thoughtful person who wants to better appreciate the naturalistic view of human existence rather than the supernatural or mystical approaches that so regrettably dominate the current scene. (shrink)

Phenomenology has a rich tradition of interpreting technology, medicine, and the life sciences. It has not yet had much to say about the medical devices which have always been central to bioethics. In this chapter, I outline what is meant by medical devices, and connect the sense of intention in made-object design with the notion of intentionality in phenomenology. I survey three basic ways of characterising medical devices grounded in the phenomenological literature: Albert Borgmann’s device paradigm, Don Ihde’s human-machine relations, (...) and Merleau-Ponty’s body-subject. Engaging with these approaches could help bring to analyses of medical devices the uniquely whole-of-context view of which phenomenology is capable, and better inform all stakeholders about their phenomenal consequences. (shrink)

This paper examines the task of understanding dialogues in terms of the mental states of the participating agents. We present a motivating example that clarifies the challenges this problem involves and then outline a theory of dialogue interpretation based on abductive inference of these unobserved beliefs and goals, incremental construction of explanations, and reliance on domain-independent knowledge. After this, we describe UMBRA, an implementation of the theory that embodies these assumptions. We report experiments with the system that demonstrate its ability (...) to accurately infer the conversants’ mental states even when some speech acts are unavailable. We conclude by reviewing related research on dialogue and discussing avenues for future study. (shrink)

BACON.3 is a production system that discovers empirical laws. Although it does not attempt to model the human discovery process in detail, it incorporates some general heuristics that can lead to discovery in a number of domains. The main heuristics detect constancies and trends in data, and lead to the formulation of hypotheses and the definition of theoretical terms. Rather than making a hard distinction between data and hypotheses, the program represents information at varying levels of description. The lowest levels (...) correspond to direct observations, while the highest correspond to hypotheses that explain everything so for observed. To take advantage of this representation, BACON.3 has the ability to carry out and relate multiple experiments, collapse hypotheses with identical conditions, ignore differences to let similar concepts be treated as equal, and to discover and ignore irrelevant variables. BACON.3 has shown its generality by rediscovering versions of the ideal gas law, Kepler's third law of planetary motion, Coulomb's law, Ohm's law, and Galileo's laws for the pendulum and constant acceleration. (shrink)

Religious Evolution and the Axial Age describes and explains the evolution of religion over the past ten millennia. It shows that an overall evolutionary sequence can be observed, running from the spirit and shaman dominated religions of small-scale societies, to the archaic religions of the ancient civilizations, and then to the salvation religions of the Axial Age. Stephen K. Sanderson draws on ideas from new cognitive and evolutionary psychological theories, as well as comparative religion, anthropology, history, and sociology. He (...) argues that religion is a biological adaptation that evolved in order to solve a number of human problems, especially those concerned with existential anxiety and ontological insecurity. Much of the focus of the book is on the Axial Age, the period in the second half of the first millennium BCE that marked the greatest religious transformation in world history. The book demonstrates that, as a result of massive increases in the scale and scope of war and large-scale urbanization, the problems of existential anxiety and ontological insecurity became particularly acute. These changes evoked new religious needs, especially for salvation and release from suffering. As a result entirely new religions-Zoroastrianism, Judaism, Christianity, Hinduism, Buddhism, Confucianism, and Daoism-arose to help people cope with the demands of the new historical era. (shrink)

The concept of moral distress comes from nursing ethics, and was initially defined as ‘…when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action’. There is a large body of literature associated with moral distress, yet multiple definitions now exist, significantly limiting its usefulness. We undertook a systematic review of the argument-based bioethics literature on this topic as the basis for a critical appraisal, identifying 55 papers for analysis. (...) We found that moral distress is most frequently framed around individual experiences of distress in relation to local practices and constraints, and understood in terms of power relations and workplace hierarchies. This understanding is directly derived from, and often still seen as specific to, nursing. Frequently the perspective of the morally distressed individual is privileged. Understandings of moral distress have evolved towards an ‘occupational health approach’, with the assumption that moral distress should be measured and prevented. Counter-perspectives were identified, highlighting conceptual problems. Based on our review, we propose a redefinition of moral distress: ‘Ethical unease or disquiet resulting from a situation where a clinician believes they have contributed to avoidable patient or community harm through their involvement in an action, inaction or decision that conflicts with their own values’. This definition is specific enough for research use, anchored in clinicians’ professional responsibilities and concerns about harms to patients, framed relationally rather than hierarchically, and amenable to multiple perspectives on any given morally distressing situation. (shrink)

Therapeutic misconception involves the failure of subjects either to understand or to incorporate into their own expectations the distinctions in nature and purpose of personally responsive therapeutic care, and the generic relationship between subject and investigator which is constrained by research protocols. Researchers cannot disregard this phenomenon if they are to ensure that subjects engage in research on the basis of genuine informed consent. However, our presumption of patient autonomy must be sustained unless we have compelling evidence of serious misunderstanding. (...) This article argues that the mere expression of aspects of therapeutic misconception should not necessarily displace the presumption of subject autonomy or undermine ethical inclusion in research for at least three reasons. First, some interpretations of the empirical data do not suggest misunderstanding. Second, assessment of misestimation and optimism are delicate and value-laden, and turn quickly from questions of autonomy to questions of judgment. Third, incomplete understanding may yet be sufficient to allow a subject to engage in a substantially autonomous decision-making process. Our point is not to dismiss the possibility of genuine therapeutic misconception, but to question its frequency and fatality to the consent process. (shrink)

"...{The first edition of Professor Cryer's book was} absolutely outstanding, in four main respects. First, it is comprehensive in its scope, covering everything from applying to undertaking a research degree. Second, it is applicable to PhDs across the board. Third, the book is exceptionally well written and highly readable. Finally, at each stage Pat Cryer has included questions and exercises to enable readers to reflect on their practice, check out whether they are on track and, if not, discover how they (...) might return themselves to it. Overall, Pat Cryer has made a major contribution to the field and produced a quite exceptional book. It ought to be compulsory reading for intending or actual postgraduates and for academic staff teaching research training programmes." - Assessment & Evaluation in Higher Education The second edition of this Open University set book is, like the first edition, for postgraduate research students wherever the language of instruction is English. Irrespective of their field of study, it will make their research programmes and day-to-day lives more productive and enjoyable. The book is easy to dip into and is in conversational style. Interest and realism are added through anecdotes, extracts from the literature and pithy quotations. The second edition is a complete revision of the original. New emphases include: the needs of the growing number of part time postgraduates; a wider understanding of the term 'research student' to embrace all postgraduate students undertaking research, whether for traditional PhDs and MPhils or within programmes such as professional doctorates, 'taught' masters degrees, diplomas and certificates; information technology as a day-to-day tool. There are also two new chapters: one on options for postgraduate study and research and the other on skills development and employment issues. There is a foreword by Professor Sir Martin Harris, Chair of the National UK Review of Postgraduate Education. (shrink)

The most plausible type of panpsychism explains high-level consciousness as a compound of basic conscious properties instantiated by basic bottom-level physical objects. Arguments for panpsychism stand little chance in the absence of an account that makes sense of basic bottom-level experience; and explains how basic bottom-level experiences yield high-level experiences. This paper tackles the first task. It develops a method for investigating basic bottom-level experience: it identifies constraints, motivated by scientific and philosophical considerations, that force a unique account. Then it (...) applies this method, using quarks as stand-ins for basic but conscious physical objects. It concludes that quark-consciousness is maximally simple ; multiple ; and internal. (shrink)

This study uses best–worst scaling experiments to examine differences across six countries in the attitudes of consumers towards social and ethical issues that included both product related issues (such as recycled packaging) and general social factors (such as human rights). The experiments were conducted using over 600 respondents from Germany, Spain, Turkey, USA, India, and Korea. The results show that there is indeed some variation in the attitudes towards social and ethical issues across these six countries. However, what is more (...) telling are the similarities seen and the extent to which individual variation dominates observable demographics and country-based variables. (shrink)

This study uses best–worst scaling experiments to examine differences across six countries in the attitudes of consumers towards social and ethical issues that included both product related issues (such as recycled packaging) and general social factors (such as human rights). The experiments were conducted using over 600 respondents from Germany, Spain, Turkey, USA, India, and Korea. The results show that there is indeed some variation in the attitudes towards social and ethical issues across these six countries. However, what is more (...) telling are the similarities seen and the extent to which individual variation dominates observable demographics and country-based variables. (shrink)

One of the sub-branches of Central Semitic, Northwest Semitic, contains a number of languages with no established hierarchical relation among them: Ugaritic, Aramaic, Canaanite, Deir Alla, and Samalian. Over the years, scholars have attempted to establish a more accurate sub-branching for Northwest Semitic or to suggest a different genetic affiliation for some languages, usually Ugaritic. In this paper, we will argue that Aramaic and Canaanite share a direct ancestor, on the basis of a number of morphosyntactic features: the fs demonstrative (...) *ðaˀt, the direct object marker *ˀayāt, the development of dative subjects with adjectival predicates, the use of the construct state with prepositions, the G imperfect inflection of geminate verbs, and the plural form of *bayt. We will also address arguments that Ugaritic is a Canaanite dialect, or that Canaanite and Ugaritic are more closely related. This proposal not only outlines a more coherent family tree for Northwest Semitic, but also accounts for numerous “Aramaic”-like features in some Canaanite dialects, primarily Biblical Hebrew, which have thus far been treated as the result of language contact in the early Iron Age. (shrink)

This paper examines the task of understanding dialogues in terms of the mental states of the participating agents. We present a motivating example that clarifies the challenges this problem involves and then outline a theory of dialogue interpretation based on abductive inference of these unobserved beliefs and goals, incremental construction of explanations, and reliance on domain-independent knowledge. After this, we describe UMBRA, an implementation of the theory that embodies these assumptions. We report experiments with the system that demonstrate its ability (...) to accurately infer the conversants’ mental states even when some speech acts are unavailable. We conclude by reviewing related research on dialogue and discussing avenues for future study. (shrink)

An account of the transition from the Edenic to the state of nature discourse in the late sixteenth and early seventeenth centuries has yet to be written. The contention of this paper is that Hobbes's work is a useful place to begin an investigation of this process of change. Though not the initiator of this transformation, Hobbes must take much of the credit for the eventual eclipse of one discourse by the other. An exposition of the Edenic discourse, kept alive (...) in the theological tracts of English divines, sets the proper context for an appreciation of Hobbes's state-of-nature scheme. As is made evident in a number of his Latin publications, Hobbes came to realize that the viability of his own narrative of political creation required the subversion of traditional glosses on Genesis. By attending to two particular features of the Edenic discourse that Hobbes sought to negate -- the language Adam spoke and the knowledge he possessed and transmitted to his posterity -- important connections are made with Hobbes's general theory of signs and his absolutist theory of sovereignty. (shrink)

Using touch as a medium for exploring the ways in which it is constructed by nurses, the body is here characterized by a plethora of competing and co‐existing terms: disobedient, obedient, mirroring, stigmatized, sinful, post‐mortem, sanitized, angelic, desexualized, dangerous, dominant, dominating, deceitful, submissive, disciplined, postmodern and communicative. We have tried to be provocative by juxtaposing contradictory messages and evoking conflicting emotions, and we hope that the reader will not assume that we believe everything we write, or that everything may be (...) taken only at face value. There are as many messages and meanings in the paper as each reader thinks there are. (shrink)