Background Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.Methods We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic (...) development were used to collaboratively interpret fieldnotes and transcripts.Results Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child’s day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child.Conclusion Families’ ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers’ – which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic. (shrink)

Money is a symbol. Beginning with this simple notion, we have completed a qualitative study of how money exists in people’s everyday lives and how it is used symbolically. A review of the financial, economic, psychological, and semiotic literature shows that even though money is written and talked about exhaustively, little symbol theory appears in economic writing, and we rarely found money mentioned in semiotic texts. We used a qualitative, phenomenological approach to identify critical thematic elements and underlying structures of (...) participants’ experience. We also incorporated an accepted symbol-structure template in our analysis of the functions, emotions, actions, and reactions in the transactions our participants described. Participants refer to money both as wealth in the abstract and as concrete amounts about to be used. Our analysis of money in the abstract describes a structure of experience involving belonging, privacy and secrecy, unequal distribution, quantitative uncertainty, reflections of life history, and values. Our analysis of money in the concrete reveals a symbolic intention and a variety of “Others” engaged in the symbolic action. (shrink)

For many children with complex medical conditions, decisions regarding their goals of care lie in the zone of parental discretion. That is, clinicians appropriately recognize that in many cases whether to prioritize quantity of life or quality of life is a deeply personal, values-laden decision best made by those who are most deeply invested in the outcome. Once a family has committed to a goal, however, there may be new or ongoing conflict between parents and clinicians regarding the specific interventions (...) provided or not provided in support of that goal. To what extent is it ethically permissible for a seriously ill child’s surrogate decision makers to reject individual interventions that support their desired goal of care? This question might be best described thus: is pediatric healthcare “prix fixe,” in which clinicians help parents decide the best of one or more set combinations (“menus”) of interventions, or is it “à la carte,” in which parents are free to accept or reject each individual intervention? We argue that the concept of a “prix fixe” approach should be discussed with families early in the development of the clinical relationship, as an essential facet of shared decision making. (shrink)

An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become “immortalized” in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched (...) to each other. Reidentification, the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants. The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants’ consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform—the Personal Genome Project—to allow study participants to contribute their voices to inform ethical consent practices and protocol reviews for big-data research. (shrink)

The two target articles in this issue bring into focus the struggle for governance over biomedical interventions that may offer some families more agency—the capacity to act—in the context of many...

Background: Nurses and midwives have a professional obligation to promote health and prevent disease, and therefore they have an essential role to play in vaccination. Despite this, some nurses and midwives have been found to take an anti-vaccination stance and promulgate misinformation about vaccines, often using Facebook as a platform to do so. Research question: This article reports on one component and dataset from a larger study – ‘the positives, perils and pitfalls of Facebook for nurses’. It explores the specific (...) issue of nurses and midwives who take an anti-vaccination stance, deemed to be unprofessional by crossing professional boundaries and by providing medical information on Facebook that is not within their scope of practice. Participants: Data were collected via an online worldwide survey from nurse and midwife participants, distributed and ‘snowballed’ through relevant nursing and midwifery groups on Facebook. In total, 1644 Registered Nurses and Midwives, and Enrolled Nurses worldwide attempted the online survey. There were 1100 (66.9%) completed surveys and 54 partially (33.1%) completed surveys. Semi-structured interviews were also conducted online using Skype® with 17 participants in Australia. Ethical considerations: Ethical processes and procedures have been adhered to relating to privacy, confidentiality and anonymity of the participants. Findings/results: A mixed-methods approach was used, including descriptive and content analysis of the quantitative survey data and thematic analysis of the qualitative interview data. The main theme ‘blurred boundaries’ was generated, which comprised three sub-themes: ‘follow the science, ‘abuse of power and erosion of trust’ and ‘the moral and ethical responsibility to safeguard public health’. The results offer an important and unique understanding of how nurses and midwives interpret the conduct of fellow health professionals as unprofessional and crossing the professional boundary if they used Facebook to promulgate anti-vaccination messages and/or give medical advice online. Conclusion: There are many positives and negatives for nurses and midwives associated with using Facebook for personal and professional communication, which is in keeping with the results of the larger study from which this article is taken. Professional behaviour is a key theme in the larger research as is the ethical construct of ‘every act has a consequence’; however, in this article, the theme ‘blurred boundaries’ offers an overall understanding of how nurses and midwives interpret the behaviour of their colleagues who espouse anti-vaccination sentiment and/or give medical advice online that is outside their scope of practice and education. (shrink)

One barrier to optimal pain management in the neonatal intensive care unit (NICU) is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are (1) vulnerable to pain and harm, and (2) completely dependent (...) on others for pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

_Black Intellectual Thought in Education_ celebrates the exceptional academic contributions of African-American education scholars Anna Julia Cooper, Carter G. Woodson, and Alain Leroy Locke to the causes of social science, education, and democracy in America. By focusing on the lives and projects of these three figures specifically, it offers a powerful counter-narrative to the dominant, established discourse in education and critical social theory--helping to better serve the population that critical theory seeks to advocate. Rather than attempting to "rescue" a (...) few African American scholars from obscurity or marginalization, this powerful volume instead highlights ideas that must be probed and critically examined in order to deal with prevailing contemporary educational issues. Cooper, Woodson, and Locke’s history of engagement with race, democracy, education, gender and life is a dynamic, demanding, and authentic narrative for those engaged with these important issues. (shrink)

Black Americans are underrepresented members of the US accounting academy (Brown-Liburd and Joe 2020). By interviewing Black accounting faculty about their experiences during their doctoral education and institutional hiring and promotion processes, we discover stories of degradation, stereotyping, and exclusion (i.e., microaggressions) that participants report negatively impact their views of the academic accounting profession and increase their turnover intentions. Microaggressions committed against Black accounting faculty may contribute to underrepresentation that can be addressed through enlightenment, education, and interaction. Our findings (...) are important as they fill gaps in related extant literature concerning the existence and impacts of microaggressions, and they may help improve diversity and equity in the accounting academy. (shrink)

Over the past decade, Canadian media coverage of street sex work has steadily increased. The majority of this interest pertains to graphic violence against street sex workers, most notably from Vancouver, British Columbia. In this article, the authors analyze newspaper coverage that appeared in western Canadian publications between 2006 and 2009. In theorizing the violence both depicted and perpetrated by newspapers, the authors propose an analytic framework capable of attending to the process of othering in all of its complexity. To (...) this end, the authors supplement a Foucauldian analysis of abjection by considering the work of Judith Butler along with Julia Kristeva's conceptualization of abjection. Using excerpts from western Canadian newspapers, the authors illustrate how the media's discursive practices function as triggers for the process of cultural abjection by inscribing street sex workers with images of defilement. The authors argue that newspaper coverage of street sex workers reinforces the inviolability of normalized life by constantly reiterating the horror reserved for abjected bodies. (shrink)

Powers of Horror is an excellent introduction to an aspect of contemporary French literature which has been allowed to become somewhat neglected in the current emphasis on para-philosophical modes of discourse.".

Assuming that there is moral progress, and assuming that the abolition of slavery is an example of it, how does moral progress occur? Is it mainly driven by specific individuals who have gained new moral insights, or by changes in the socio‐economic and epistemic conditions in which agents morally judge the norms and practices of their society, and act upon these judgements? In this paper, I argue that moral progress is a complex process in which changes at the level of (...) belief and changes at the level of institutions and social practices are deeply intertwined, and that changes in the socio‐economic and epistemic conditions of moral agency constitute the main motor of moral progress. I develop my view of moral progress by way of grappling with Michelle Moody‐Adams’ prominent philosophical account of it. My view is less intellectualistic and individualistic than hers, does not presuppose meta‐ethical moral realism, and blurs her distinction between moral progress in beliefs and moral progress in social practices. I point out the limits of humans to progress morally, which are partly grounded in our evolutionary history, and argue that moral progress is always of a ‘local’ nature. (shrink)

Kristeva points to Montesquieu's esprit général--his notion of the social body as a guaranteed hierarchy of private rights--in this humanistic plea for tolerance and commonality.

The world is becoming deeply interconnected, whereby actions in one part of the world can have profound repercussions elsewhere. In a world of overlapping communities of fate, there has been a renewed enthusiasm for thinking about what it is that human beings have in common, and to explore the ethical basis of this. This has led to a renewed interest in examining the normative principles that might underpin efforts to resolve global collective action problems and to ameliorate serious global risks. (...) This project can be referred to as the project of cosmopolitanism. In response to this renewed cosmopolitan enthusiasm, this volume has brought together 25 seminal essays in the development of cosmopolitan thought by some of the world's most distinguished cosmopolitan thinkers and critics. It is divided into six sections: classical cosmopolitanism, global justice, culture and cosmopolitanism, political cosmopolitanism, cosmopolitan global governance and critical examinations. This volume thus provides a thorough and extensive introduction to contemporary cosmopolitan thought and acts as a definitive source for those interested in cosmopolitan thinking and its critics. See also David Held's _Cosmopolitanism: Ideals and Realities_. (shrink)

Recently, society and the accounting profession have become increasingly concerned with ethics. Accounting researchers have responded by attempting to investigate and analyze the ethical behavior of accountants. While the current state of ethical behavior among practitioners is important, the ability of accountants to detect ethical problems that may not be obvious should also be studied and understood. This study addresses three questions: (1) are auditors alert to ethical issues; (2) if so, how important do they perceive them to be; and (...) (3) what factors affect their sensitivity threshold and their perceptions of the importance of the issues?Most of the prior research in accounting ethics presents subjects with scenarios that contain an obvious ethical issue, and subjects realize that they are participating in an ethics study. In the present study, the ethical problems are integrated into general accounting situations in order to discover the sensitivity of accounting professionals to them. This study defines ethical sensitivity as the ability to interpret a given situation and to realize that a moral problem exists. (shrink)

It is unclear whether someone’s responsibility for developing a disease or maintaining his or her health should affect what healthcare he or she receives. While this dispute continues, we suggest that, if responsibility is to play a role in healthcare, the concept must be rethought in order to reflect the sense in which many health-related behaviours occur repeatedly over time and are the product of more than one agent. Most philosophical accounts of responsibility are synchronic and individualistic; we indicate here (...) what paying more attention to the diachronic and dyadic aspects of responsibility might involve and what implications this could have for assessments of responsibility for health-related behaviour. (shrink)

Abstract:This study examined the relationship between the individual difference variables of personal moral philosophy, locus of control, Machiavellianism, and just world beliefs and ethical judgments and behavioral intentions. A sample of 602 marketing practitioners participated in the study. Structural equation modeling was used to test hypothesized relationships. The results either fully or partially supported hypothesized direct effects for idealism, relativism, and Machiavellianism. Findings also suggested that Machiavellianism mediated the relationship between individual difference variables and ethical judgments/behavioral intentions.

The purpose of this paper is to evaluate the `Lorentzian Pedagogy' defended by J.S. Bell in his essay ``How to teach special relativity'', and to explore its consistency with Einstein's thinking from 1905 to 1952. Some remarks are also made in this context on Weyl's philosophy of relativity and his 1918 gauge theory. Finally, it is argued that the Lorentzian pedagogy---which stresses the important connection between kinematics and dynamics---clarifies the role of rods and clocks in general relativity.

In this article, we outline a novel approach to understanding the role of responsibility in health promotion. Efforts to tackle chronic disease have led to an emphasis on personal responsibility and the identification of ways in which people can ‘take responsibility’ for their health by avoiding risk factors such as smoking and over-eating. We argue that the extent to which agents can be considered responsible for their health-related behaviour is limited, and as such, state health promotion which assumes certain forms (...) of moral responsibility should be avoided. This indicates that some approaches to health promotion ought not to be employed. We suggest, however, that another form of responsibility might be more appropriately identified. This is based on the claim that agents have prudential reasons to maintain their health, in order to pursue those things which make their lives go well—i.e. that maintenance of a certain level of health is rational for many agents, given their pleasures and plans. On this basis, we propose that agents have a self-regarding prudential responsibility to maintain their health. We outline the implications of a prudential responsibility approach to health promotion. (shrink)

Spoken language consists of a linear sequence of units, from which the existence of particular underlying hierarchical processing mechanisms is inferred. Uddén et al. use graph theory to provide a framework for describing the possible structural relationships that may underlie a linear output sequence. Being more explicit in defining different structures can help identifying and testing for such structures in AGL experiments, as well as help showing how behavioral and neuroimaging data reveals signatures of hierarchical processing in humans.

Recently ethical implications of human resource management have intensified the focus on care perspectives in management and organization studies. Appeals have also been made for the concept of organizational care to be grounded in philosophies of care rather than business theories. Care perspectives see individuals, especially women, as primarily relational and view work as a means by which people can increase in self-esteem, self-develop and be fulfilled. The ethic of care has received attention in feminist ethics and is often socially (...) construed as a feminine ethic. Although well developed in the caring professions there remains no model or definition of the care ethic in management literature with little care research undertaken. This paper develops the concept of the care ethic using Heidegger’s philosophy, namely, care is fundamental to human being. To show Heideggerian care, an individual notices, pays attention to another and responds in ways to empower and enable. In a study which aimed to analyze women’s lived experience of career, we applied the philosophically grounded methodology hermeneutic phenomenology. Findings revealed the power of Heideggerian care, Sorge, as a key factor in creating meaning. From this, we propose that care has potential as a theoretical and philosophically based construct with strong practical implications. It provides a way of understanding the care ethic, lies at the heart of our being, and is essential to meaning in our grelationships and undertakings. Crucially, it can provide reprieve from the existential angst that trademarks our being. (shrink)

Ronald Dworkin's work on equality has shaped debates in the field of distributive justice for nearly three decades. In this book Alexander Brown attempts to provide a critique but also a defence of that work, and to extend equality of resources globally.

In the Appendix to the Treatise, Hume argues that there is a significant problem with his earlier account of personal identity. There has been considerable debate about what this problem actually is. I develop a new version of an internal inconsistency reading, where I argue that Hume realised that his original account of the connexion between perceptions in terms of an association of the ideas of the perceptions was not a viable means of explaining the connexion between perceptions as it (...) leads to an infinite regress of ideas of perceptions. This is only stopped by accepting that the mind perceives a connexion between perceptions. This, however, is something Hume cannot accept. As a result, Hume is left without a positive account of the self, as he has no account of the connexion between perceptions. (shrink)

The purpose of the paper is to explore different aspects of the covariance of non-relativistic quantum mechanics. First, doubts are expressed concerning the claim that gauge fields can be 'generated' by way of imposition of gauge covariance of the single-particle wave equation. Then a brief review is given of Galilean covariance in the general case of external fields, and the connection between Galilean boosts and gauge transformations. Under time-dependent translations the geometric phase associated with Schrödinger evolution is non-invariant, and the (...) significance of this result is briefly analysed. The covariance properties of Schrödinger dynamics are then brought to bear on certain versions of the modal interpretation of quantum mechanics. The conclusion that it is only relational properties that can be considered coordinate- or gauge-independent elements of reality is reinforced by appeal to the theory of quantum reference frames due to Aharonov and Kauffher. , Cambridge University Press ; pp. 45-70.). (shrink)

Volume 24, Issue 6, September 2019, Page 682-683.

It is often argued that cosmopolitanism faces unique motivational constraints, asking more of individuals than they are able to give. This ‘motivational problem’ is held to pose a significant challenge to cosmopolitanism, as it appears unable to transform its moral demands into motivated political action. This article develops a novel response to the motivational problem facing cosmopolitanism, arguing that self-interest, alongside appeals to sentiment, can play a vital and neglected, transitional role in moving towards an expanded cosmopolitical condition. The article (...) explicates the ‘motivational problem’, analyses the relationship between self-interest and sentimental cosmopolitanism in addressing it, and develops a series of claims that self-interest can be one important component in what we label as ‘transitional cosmopolitanism’. In doing so, we argue that self-interested motivations can be compatible with sentiment-based approaches, rendering them more plausible. In addition, two expected critiques of self-interested ‘transitional cosmopolitanism’ are tackled: (A) That it cannot address feasibility constraints, and (B) That self-interested motivations cannot meet what an ‘authentic’ cosmopolitanism entails. We refute and challenge these critiques and outline three conditions in which self-interest can advance a transitional form of cosmopolitanism, while also being compatible with cosmopolitanism writ large. (shrink)

What do the terms “profession, professional, professionalism” mean in 2002? One dictionary defines profession as “a calling requiring specialized knowledge and often long and intensive academic preparation,” and it defines professionalism as “the conduct, aims, or qualities that characterize or make a profession or professional person.” These definitions are appealingly simple. Complexity arises when we add the term “medical” as in the medical profession, a medical professional, or medical professionalism; and, here a specific understanding of “the conduct, aims, and qualities (...) that characterize” the field of medicine is required. To complicate matters, professionalism applies to both the profession as a whole as well as the individual professional persons, such as the physicians. (shrink)

Kentucky and West Virginia are among the states most severely affected by opioid poisonings and deaths. The legislatures of both states have enacted a broad range of bills intended to address related issues. We present an overview of legislation enacted in 2017 and 2018, along with an approach to analysis of practitioner response to one type of legislation.

This art-science-interaction article focuses on moral implications of a recent science announcement. Against the background of literary and cultural theories, it compares a YouTube story with narratives employed in fictional stories.