Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...) right to an open future—frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs. (shrink)

Purpose: We sought to examine the ethical, legal, and social implications (ELSI) literature research and scholarship types, topics, and contributing community fields of training as a first step to charting the broader ELSI community’s future priorities and goals. Methods: We categorized 642 articles and book chapters meeting inclusion criteria for content in both human genetics or genomics and ethics or ELSI during a 5-year period (2003–2008) according to research and scholarship types, topics, and the area of advanced training of the (...) first-listed author. Research and scholarship type categories were developed and characterized through in-depth review of 95 randomly sampled publications from the larger group. Results: There is a single dominant approach to ELSI, which focuses on ethical and other social issues “downstream” of advances in genomics, the contributors to which predominately have advanced training in medicine or science fields other than social science. A comparatively low percentage of publications primarily offer policy recommendations, and these are much more likely to be written by those with advanced training in law than is the case for the literature as a whole. Social science studies predominately employ qualitative methods and vary significantly with respect to the extent and types of recommendations offered. Two further types of ELSI research and scholarship offer alternative models for so-called “normative” work in this field. Conclusion: Considering topics, training, and types of ELSI research and scholarship from the most recent past allows for a baseline perspective that is sorely needed in charting this field’s future course. (shrink)

Background: Discussion of the influence of money on bioethics research seems particularly salient in the context of research on the ethical, legal, and social implications (ELSI) of human genomics, as this research may be financially supported by the ELSI Research Program. Empirical evidence regarding the funding of ELSI research and where such research is disseminated, in relation to the specific topics of the research and methods used, can help to further discussions regarding the appropriate influence of specific institutions and institutional (...) contexts on ELSI and other bioethics research agendas. Methods: We reviewed 642 ELSI publications (appearing between 2003 and 2008) for reported sources of funding, forum for dissemination, empirical and nonempirical methods, and topics of investigation. Results: Most ELSI research is independent of direct grant-based funding sources; 66% reported no such sources of funding. The National Human Genome Research Institute (NHGRI) is the most dominant source of funding; 16% of publications acknowledged at least one source of NHGRI grant funding. Funding is acknowledged more frequently in empirical than nonempirical publications and more frequently in publications in public health journals than in any other ELSI research dissemination forums. Dominant research topics vary by publication forum and by reported funding. Conclusions: ELSI research is surprisingly independent of direct grant-based funding, yet correlations are apparent between this type of funding and publication placement, topics addressed, and methods used, implying a not insignificant influence on ELSI research agenda setting. However, given the relatively low percentage of publications acknowledging external grant-based funding, as well as other significant correlations between publication placement and topics addressed, additional institutional contexts, perhaps related to professional advancement or valuation, may shape research agendas in ways that potentially exceed the direct influences of grant-based funding in this area. In some cases, grant-based funding may actually counter other potentially problematic institutional influences. (shrink)

Scientists, humanists, and art lovers alike value art not just for its beauty, but also for its social and epistemic importance; that is, for its communicative nature, its capacity to increase one's self-knowledge and encourage personal growth, and its ability to challenge our schemas and preconceptions. However, empirical research tends to discount the importance of such social and epistemic outcomes of art engagement, instead focusing on individuals' preferences, judgments of beauty, pleasure, or other emotional appraisals as the primary outcomes of (...) art appreciation. Here, we argue that a systematic neuroscientific study of art appreciation must move beyond understanding aesthetics alone, and toward investigating the social importance of art appreciation. We make our argument for such a shift in focus first, by situating art appreciation as an active social practice. We follow by reviewing the available psychological and cognitive neuroscientific evidence that art appreciation cultivates socio-epistemic skills such as self- and other-understanding, and discuss philosophical frameworks which suggest a more comprehensive empirical investigation. Finally, we argue that focusing on the socio-epistemic values of art engagement highlights the important role art plays in our lives. Empirical research on art appreciation can thus be used to show that engagement with art has specific social and personal value, the cultivation of which is important to us as individuals, and as communities. (shrink)

While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample (...) of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries. (shrink)

We suggest a fuller understanding of the obligation to respect patient autonomy can be gained by recognizing patients as historically and socially situated agents, whose values are developed, challenged, and changed, rather than merely applied, in their decision-making about their use of preimplantation genetic diagnosis or preimplantation genetic screening (PGD/PGS). We ground this discussion in empirical research on the patients experiences with PGD/PGS, and conclude by suggesting that promoting patients’ self-respect is a useful ethical standard for providers and practices to (...) recognize. (shrink)

Embedding research ethics education into apprenticeship-model undergraduate research experiences can contribute to creating, and maintaining, ethical and inclusive research cultures. Occidental College’s Biology and Philosophy Departments collaborated to develop a model for undergraduate ecological field research ethics education focused on promoting students’ understanding of ethics as embedded within scientific research practices. The model has two primary components: (a) a philosophical reading, reflective journaling, and discussion group for both philosophy and ecology undergraduate researchers about ecological research ethics; and (b) philosophy faculty (...) and undergraduate researchers embedded within and assisting with ecological fieldwork, while also pursuing their philosophical fieldwork projects. This project highlights a range of ways of embedding ethics in research experiences that can be adapted to other contexts, including sustained and structured reflective journaling focused one’s scientific practice and regular philosophical discussions involving the entire research group. (shrink)

This paper describes a novel approach to teaching introductory-level students how to engage with philosophical texts, developed in the context of a philosophy of art course. We aimed to enhance students’ motivation to read philosophy well by cultivating habits of active reading. To this end we created a structured set of three assignments: instructor created digitally annotated reading assignments, a student digital annotation assignment, and required student participation in a collective GoogleDoc “repository of artworks, examples, ideas, and questions.” Student feedback (...) suggests that this set of teaching tools enhanced their sense of agency in approaching philosophical texts. (shrink)

The discussion of the nature and value of dignity in and for bioethics concerns not only the importance of the concept but also the aims of bioethics itself. Here, I challenge the claim that the concept of dignity is useless by challenging the implicit conception of usefulness involved. I argue that the conception of usefulness that both opponents and proponents of dignity in bioethics adopt is rooted in a narrow understanding of the role of normative theory in practical ethical thinking. (...) I then offer an alternate understanding of the nature and value of dignity. I begin by recognizing that claims that one’s dignity has been violated point to an important difference between “respect for autonomy” and “respect for persons.” I then suggest three different conceptions of how dignity can be normatively guiding for bioethics, and conclude that, ultimately, understanding dignity as the cornerstone of a reflective perspective that frames moral reflection and deliberation is valuable for doing bioethics well. (shrink)

This article presents a radical claim: American medical ethics is broken, and it needs love to be healed. Due to a unique set of cultural and economic pressures, American medical ethics has adopted a mechanistic mode of ethical reasoning epitomized by the doctrine of principlism. This mode of reasoning divorces clinicians from both their patients and themselves. This results in clinicians who can ace ethics questions on multiple‐choice tests but who fail either to recognize a patient's humanity or to navigate (...) the ethical quandaries into which they are frequently thrown. Drawing on personal experience as well as the philosophical work of Augustine of Hippo, Simone Weil, and Iris Murdoch, we propose a novel ethical approach grounded in a conception of neighbor love, specifically, the virtue of love understood as attention to a sufferer's humanity. We conclude with five practical recommendations for reimagining medical ethics education oriented around the virtue of love. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Virtual GalleryJohn Clair Miller* Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view (...) View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller. Click for larger view View full resolutionPhotograph by John Clair Miller.Footnotes* The photographs in this issue were taken by John Clair Miller, an architect who has a practice in the upstate New York area and is currently a Professor of Design in the Department of Architecture at Cornell University. The black border which frames each image was made in the darkroom by printing the edge of the negative at the same time as the picture was printed. These photographs are part of a series, “Reading the Surface,” and all are “Untitled.” Professor Miller began this series in 1977 on the coast of Maine, Down East.Copyright © 1998 The Johns Hopkins University Press... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Virtual GalleryThe collages were constructed by John Clair Miller, an architect and currently a Professor of Design in the Department of Architecture at Cornell University. They are part of a series produced in Rome, Italy, while teaching in the Cornell Architecture Program in Rome, Fall 1998. The material used in the compositions was collected from layers of old and recent posters mounted in the streets of Rome, and (...) they were composed in a sketchbook five by eight inches. They are formal compositions without subject matter. Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolution Click for larger view View full resolutionCopyright © 2001 The Johns Hopkins University Press... (shrink)

Role models can be highly influential in conveying ethical standards. This study investigates the influence various categories of role models have had on a population of over 1,600 undergraduate students in Texas, Oregon and Michigan. Those identifying clergy, boy scout leaders, friends and college advisors as role models exhibited less willingness to adopt questionable ethical behavior in negotation situations. Journalist and spouse role models tended to cause students to be more accepting of questionable behavior. Individuals with strong end-result and social (...) contract ethical philosophies, as well as males and those who served in the military exhibited strong tendencies toward less than ethical behavior. Individuals with strong rule ethical philosophy, high levels of religiousity, and those with a cooperative attitude in negotiations tended to adopt higher ethical standards in negotiations. (shrink)

This workshop brought together people who are interested in or concerned about the course syllabus. Participants’ concerns and discussion centered on issues such as: 1) the purpose of the syllabus; 2) writing objectives for the course; and 3) evaluation of a syllabus.

This article describes a method of scoping for potential ethical contentions within a resource constrained research environment where actor participation and bottom–up analysis is precluded. Instead of reverting to a top–down analytical structure, a data-led process is devised. This imitates a bottom–up analytic structure in the absence of the direct participation of actors, culminating in the construction of a map of the ethical landscape; a high-resolution ethical matrix of coded interpretations of various actors’ ethical framings of the technology. Despite its (...) limitations, which are discussed, the map can subsequently support the identification of areas where ethical contentions may be raised. Here, the method is described with reference to the construction and analysis of a map of the ethical landscape of carbon capture and storage technology. Taken as a preliminary stage of a larger study, it can support the design and initiation of more sophisticated analyses which may integrate stronger bottom–up participation and facilitate a reflective, deliberative process amongst actors. (shrink)

This article explores the dialogical engagement between text and interpreter, which is shaped by the particular socio-cultural location of African American readers/hearers. It identifies some of the key issues that help to shape an African American socio-cultural context and explores their implications for biblical interpretation.

Following Zizek's insight that the blockbuster can constitute the ideal terrain for mapping out the ideological and political dilemmas of our conjuncture, this piece takes a Zizekian look awry at two recent depictions of revolutionary crowds/movements in "The Dark Knight Rises" and "Argo". Viewed through the genealogical lens of representations of the “people” in philosophy and literature, what we find in both films is a (distorted, dispersed) staging not only of our own time and situation, a strange figuration of capital (...) and an ultimately justified revolutionary struggle over the city (or, surplus). (shrink)

This paper suggests that lessons from the field of environmental ethics and sociological perspectives on knowledge are important tools for rethinking what type of ethical analysis is needed for building up further the field of development ethics and, more generally, for addressing some of the most fundamental ethical problems related to global poverty and development. The paper argues for a methodologically pragmatist approach to development ethics that focuses on the interplay between facts, values, concepts and practices. It views development ethics (...) as a hybrid between a public moral?political philosophy and a public conception of social science. Ethical analyses of poverty and development must lead to fundamental changes in the ways knowledge is produced and justified and must challenge the dominance of global institutions and orthodox economics as the single sources of expert knowledge for development. Two of the main tasks of ethical analysis is to provide tools for the formulation of alternative knowledge for development centred on the equal moral worth of all human beings, and to influence global policy making as well as multilateral institutions' goals and policies. The last section of the paper argues that Amartya Sen's version of the Capability Approach is already methodologically pragmatist and points to some convergence between Sen's work and John Dewey's. Further sociological and methodologically pragmatist analysis of the approach is needed to assess the ways in which it is influencing debates on human development and leading to policy changes, and the possible distortions it suffers when adopted by multilateral agencies and policy makers. An earlier version of this paper was presented at the international conference on Ethics and Development at Michigan State University, East Landing (USA) 8?15 April 2005. The section on methodological pragmatism draws from an unpublished paper written with Andrew Light called ?A Pragmatist Methodology for Development Ethics,? presented at the American Philosophical Association (APA) meeting in New York, December 1999. I have updated, transformed and used some parts and insights developed with Light in a way he may not recognize. (shrink)

Physician religion/spirituality has the potential to influence the communication between physicians and parents of children at the end of life. In order to explore this relationship, the authors conducted two rounds of narrative interviews to examine pediatric physicians’ perspectives (N=17) of how their religious/spiritual beliefs affect end–of–life communication and care. Grounded theory informed the design and analysis of the study. As a proxy for religiosity/spirituality, physicians were classified into the following groups based on the extent to which religious/spiritual language was (...) infused into their responses: Religiously Rich Responders (RRR), Moderately Religious Responders (MRR), and Low Religious Responders (LRR). Twelve of the 17 participants (71%) were classified into the RRR or MRR groups. The majority of participants suggested that religion/spirituality played a role in their practice of medicine and communication with parents in a myriad of ways and to varying degrees. Participants used their religious/spiritual beliefs to support families’ spirituality, uphold hope, participate in prayer, and alleviate their own emotional distress emerging from their patients’ deaths. (shrink)

This article reflects on the implications of the concept of health and the questions it poses for moral philosophy, psychology, and the panoply of professions that are involved in the practices of care and in the ethics of individual rights, dignity, and autonomy. Significant among these questions is what we call “the predicament of agency.” The predicament involves the ethical tensions—arising within the broad concept of health and flourishing, but also in concrete everyday practices and relationships—between supporting individual health outcomes (...) and supporting health and flourishing through respect for autonomy and self-direction. Three ways of addressing the predicament of agency are discussed: by reinterpreting the nature and requirements of autonomy (a) by appeal to reason, (b) by designing or curating contextual conditions influencing choice (often called “choice architecture” or “nudging”) in ways that constrain autonomy but do not violate its core value, and (c) by appeal to relational judgment and reflective professional practice. The article argues that each of these lines of thought is important, but none is a panacea, and none is free from conceptual confusions and ethical pitfalls of its own. The relational approach is the most promising in pointing beyond the predicament of agency—not so much by resolving it as by showing how it can be worked through without either turning our back on caring or turning caring into management and manipulation. (PsycINFO Database Record (c) 2016 APA, all rights reserved). (shrink)

Economist-philosopher Amartya Sen's writings on social and political issues have attracted wide audiences. Section 2 introduces his contributions on: how people reason as agents within society; social determinants of people's (lack of) access to goods and of the effective freedoms and agency they enjoy or lack; and associated advocacy of self-specification of identity and high expectations for ‘voice’ and reasoning democracy. Section 3 considers his relation to social theory, his tools for theorizing action in society, and his limited degree of (...) attention to work by sociologists and to capitalism and power structures. Section 4 characterizes a style marked by conceptual refinement, emphases on complexity and individuality, including personal individuality, and reformist optimism. Section 5 shows the features from Sections 3 and 4 at work in his conception of personhood that advocates freedom to make a reasoned composition of personal identity. Similarly, Section 6 addresses his conception of public reasoning and neglect of the sociology of democracy. It contrasts the ideal of a reasoning polity with features in many countries. Sen's programmes for critical autonomy in personhood and for reasoned politics play, nevertheless, a normic role, while his analytical formats help investigation of obstacles to more widespread agency, voice, and democratic participation. (shrink)

The Politics of the Soul: Eric Voegelin on Religious Experience includes eight essays examining one of the most profound studies of religious experience to appear in the last century: that of the political philosopher Eric Voegelin. Voegelin is increasingly recognized as a political theorist of exceptional scope and erudition and the most important philosopher of his time since Toynbee, and his treatment of religious experience is a crucial part of his overall analysis of existence and history. This collection of essays (...) by prominenet Voegelin scholars is the first book to explore the relevance of that analysis to the contemporary understanding of political theory, theology, history, and philosophy of consciousness, and as such it constitutes a significant contribution not only to Voegelin scholarship but to the current quest for theoretical foundations. (shrink)

Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.