Today’s medical training environment exposes medical trainees to many aspects of what has been called “the hidden curriculum.” In this article, we examine the relationship between two aspects of the hidden curriculum, the performance of emotional labor and the characterization of patients and proxies as “bad,” by analyzing clinical ethics discussions with resident trainees at an academic medical center. We argue that clinicians’ characterization of certain patients and proxies as “bad,” when they are not, can take an unnecessary toll on (...) trainees’ emotions. We conclude with a discussion of how training in ethics may help uncover and examine these aspects of the hidden curriculum. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

The American Journal of Bioethics, Volume 12, Issue 5, Page 13-14, May 2012.

While risk of harm is an important focus for whether clinical research on humans can and should proceed, there is uncertainty about what constitutes harm to a trial participant. In Phase I trials on healthy volunteers, the purpose of the research is to document and measure safety concerns associated with investigational drugs, and participants are financially compensated for their enrollment in these studies. In this article, we investigate how characterizations of harm are narrated by healthy volunteers in the context of (...) the adverse events they experience during clinical trials. Drawing upon qualitative research, we find that participants largely minimize, deny, or re-attribute the cause of these AEs. We illustrate how participants' interpretations of AEs may be shaped both by the clinical trial environment and their economic motivation to participate. While these narratives are emblematic of the larger ambiguity surrounding harm in the context of clinical trial participation, we argue that these interpretations also problematically maintain the narrative of the safety of clinical trials, the ethics of testing investigational drugs on healthy people, and the rigor of data collected in the specter of such ambiguity. (shrink)

In the US, research payments are technically taxable income. This article argues that tax liability is a form of possible economic and legal risk of paid research participation. Findings are presented from empirical research on Phase I healthy volunteer trials. The article concludes by discussing the implications of these findings for the informed consent process, as well as for broader ethical issues in whether and how payments for research participation should be regulated.

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...) of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

Our aim in this article is to define the difficulties that clinical ethics services encounter when they are asked to demonstrate the value a clinical ethics service (CES) could and should have for an institution and those it serves. The topic emerged out of numerous related presentations at the Un- Conference hosted by the Cleveland Clinic in August 2018 that identified challenges of articulating the value of clinical ethics work for hospital administrators. After a review these talks, it was apparent (...) that the field of clinical ethics may be at a crisis of sorts due to increased pressure to provide explicit measures to healthcare institutions to concretely demonstrate that CESs make a valuable difference in healthcare delivery. In this article, we grapple with how to satisfy the need for demonstrable value in a field in which metrics alone may not capture the scope of clinical ethics practice. We suggest that capturing the value of a CES has been difficult because the benefits of ethics consultation may be overt or attributable to the CES, but are often hidden due to the systems-level and process-oriented nature of clinical ethics work. Part of the difficulty in demonstrating the value of CESs is capturing and conveying all of the ways the integration of a CES throughout an institution positively affects patients, families, visitors, healthcare professionals, administrators, and the institution itself. Our aim is to (1) elucidate the multifaceted value added by a CES, including value that tends to be hidden and (2) suggest how to demonstrate value to others in a way that is not simplistic or reductionistic. (shrink)

Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...) sequencing or analysis of specific genomic conditions or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations. (shrink)

The current ethical norms of genomic biobanking creating and maintaining large repositories of human DNA and/or associated data for biomedical research have generated criticism from every angle, at both the practical and theoretical levels. The traditional research model has involved investigators seeking biospecimens for specific purposes that they can describe and disclose to prospective subjects, from whom they can then seek informed consent. In the case of many biobanks, however, the institution that collects and maintains the biospecimens may not itself (...) be directly involved in research, instead banking the biospecimens and associated data for other researchers. Moreover, the future uses of biospecimens may be unknown, if not unknowable, at the time of collection. Biobanking may thus stretch the meanings of inform and consent to their breaking point: if you cannot inform subjects about what their biospecimens will be used for, what can they consent to? Given that informed consent by individual subjects is the ethical gold standard, the seeming dilution of the concept in the context of biobanking is a profound problem. (shrink)

Genomic biobanks present ethical challenges that are qualitatively unique and quantitatively unprecedented. Many critics have questioned whether the current system of informed consent can be meaningfully applied to genomic biobanking. Proposals for reform have come from many directions, but have tended to involve incremental change in current informed consent practice. This paper reports on our efforts to seek new ideas and approaches from those whom informed consent is designed to protect: research subjects. Our model emerged from semi-structured interviews with healthy (...) volunteers who had been recruited to join either of two biobanks , and whom we encouraged to explain their concerns and how they understood the relationship between specimen contributors and biobanks. These subjects spoke about their DNA and the information it contains in ways that were strikingly evocative of the legal concept of the trade secret. They then described the terms and conditions under which they might let others study their DNA, and there was a compelling analogy to the commonplace practice of trade secret licensing. We propose a novel biobanking model based on this trade secret concept, and argue that it would be a practical, legal, and ethical improvement on the status quo. (shrink)

Background: A growing literature has raised—skeptically—the question of whether cutting-edge scientific research can identify and address broader ethical and policy considerations in real time. In genomics, the question is: Can ELSI contribute to genomics in real time, or will it be relegated to its historical role of after-the-fact outsider critique? We address this question against the background of a genomic screening project where we participated as embedded, real-time ELSI researchers and observers, from its initial design through its conclusion.Methods: As part (...) of the ELSI study design, the project included an ongoing reflexive ethnography in which the authors studied the process of its design and implementation. The authors were true participant observers, serving as members of various task-oriented groups while recording meetings and other events for ongoing qualitative analysis. We also conducted and analyzed interviews of multiple participants at the conclusion of the project.Results: Our real-time ELSI initiative had a mixed record of successes and challenges. If we define success as ELSI researchers having had an opportunity to participate fully in the project and to make the ELSI perspective heard, then our assessment is largely positive. If, however, we define successes as instances where real-time ELSI contributions changed the direction of the genomic or public health aspects of the GeneScreen project or, after careful deliberation, confirmed the appropriateness of the status quo, then we can identify only a few examples. While we had a seat at the table, we were, for the most part, tolerated guests.Conclusions: We conclude that there are significant barriers to real-time ELSI influence. The difficulty does not reside in any intended exclusion of an ELSI perspective, but in factors endemic to genomic research, including knowledge disparities, epistemological biases, and the pressures of time and money. (shrink)

Research uses of human bodies maintained by mechanical ventilation after being declared dead by neurological criteria, were first published in the early 1980s with a renewed interest in research on the newly or nearly dead occurring in about last decade. While this type of research may take many different forms, recent technologic advances in genomic sequencing along with high hopes for genomic medicine, have inspired interest in genomic research with the newly dead. For example, the Genotype-Tissue Expression program through the (...) National Institutes of Health aims to collect large numbers of diverse human tissues with the eventual goal of elucidating the genetic bases of common diseases through a better understanding of the relationship between genetic variation and gene expression. (shrink)

Hospital systems commonly face the challenge of determining just ways to allocate scarce drugs during national shortages. There is no standardised approach of how this should be instituted, but principles of distributive justice are commonly used so that patients who are most likely to benefit from the drug receive it. As a result, clinical indications, in which the evidence for the drug is assumed to be established, are often prioritised over research use. In this manuscript, we present a case of (...) a phase II investigational trial of intravenous thiamine for delirium prevention in patients undergoing haematopoietic stem cell transplantation to emphasise several shortcomings in the overarching prioritisation of clinical over research uses of scarce drugs. Specifically, we present the following considerations: clinical use may not have stronger evidence than research use; a strong scientific rationale for research use may outweigh the claim for clinical indications in which there is weak evidence; treatment within the context of a clinical trial may be the standard of care; and research use may not only benefit patients receiving the treatment but also offers the prospect of improving future clinical care. In summary, we argue against allocation schemes that prohibit all research uses of scarce drugs and instead recommend that allocation schemes include a balanced approach that weighs risks and benefits of access to scarce drugs irrespective of the research versus clinical use designation. (shrink)

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...) address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored. (shrink)

Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate (...) the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor. (shrink)

With their comprehensive categorization of “ambivalence-related phenomena,” Moore et al. helpfully clarify and contextualize these decisional states as they arise in patient care. Given the...

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...) address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored. (shrink)

Julie Childers and Bob Arnold’s (2019) article, “The Inner Lives of Doctors: Physician Emotion in the Care of the Seriously Ill,” uses Kübler-Ross’s influential work on death and dying to remind us...

In this paper we show how a realistic normative democratic theory can work within the constraints set by the most pessimistic empirical results about voting behaviour and elite capture of the policy process. After setting out the empirical evidence and discussing some extant responses by political theorists, we argue that the evidence produces a two-pronged challenge for democracy: an epistemic challenge concerning the quality and focus of decision-making and an oligarchic challenge concerning power concentration. To address the challenges we then (...) put forward three main normative claims, each of which is compatible with the evidence. We start with a critique of the epistocratic position commonly thought to be supported by the evidence. We then introduce a qualified critique of referenda and other forms of plebiscite, and an outline of a tribune-based system of popular control over oligarchic influence on the policy process. Our discussion points towards a renewal of democracy in a plebeian but not plebiscitarian direction: Attention to the relative power of social classes matters more than formal dispersal of power through voting. We close with some methodological reflections about the compatibility between our normative claims and the realist program in political philosophy. (shrink)

ABSTRACT This essay is a critical study of Jason Brennan's Against Democracy. We make three main points. First, we argue that Brennan's proposal of a right to competent government only works if one considers the absence of government a viable proposition, something most of his opponents are not prepared to do. Second, we suggest that Brennan's account of competent decision-making is blind to forms of oligarchic power that work against the very ideals of justice and epistemic virtue that competence is (...) meant to safeguard. Third, we muster empirical evidence to argue that, in the real world, democracy is not just about making decisions and selecting policies, in which case Brennan's argument misses its mark. (shrink)

Transforming Classroom Culture lays bare the key challenges that face today's increasingly diverse professoriate. Drawing on the experience of teachers from a wide range of universities, it reveals the rich potential for transformative teaching and learning in America's college classrooms. The book's contributors demonstrate how both parties to the learning encounter-faculty as well as students--interrogate and renegotiate their positions in shifting, dynamic systems of power that reflect wider national and global contexts. University faculty, staff, and administrators will be particularly interested (...) in learning about the creative and collaborative strategies by which faculty surmount obstacles to effective teaching practice. (shrink)

This essay identifies ‘oligarchic harm’ as a dire threat confronting contemporary democracies. I provide a formal standard for classifying oligarchs: those who use personal access to concentrated w...

La menzogna è irrinunciabile per vincere in politica? Davi ci spiega quali sono i meccanismi di persuasione a cui ricorrono taluni politici per farsi eleggere e quali le responsabilità di quegli elettori che scelgono comunque di votare chi sostiene anche ciò che non può essere vero. È indubbio che la comunicazione politica si rifaccia al simbolismo e al linguaggio delle favole; non necessariamente per occultare la realtà, ma più direttamente per esprimere con maggiore efficacia il suo messaggio. Alle celebri favole (...) di 'Biancaneve', 'Cenerentola', 'Il brutto anatroccolo' sono ricorsi infatti uomini politici del calibro di Berlusconi, Prodi, Nixon, Carter, Mitterrand e partiti quali la Democrazia Cristiana; l'hanno fatto per conquistare voti ma anche per attivare ampi meccanismi di consenso che attingessero direttamente dall'inconscio collettivo. Le conseguenze - ammonisce l'autore - possono essere molto serie, come nel caso dell'attuale politica americana che ha portato la manipolazione e l'inganno a essere riconosciuti come tratti identitari della presidenza di George W. Bush. (shrink)

Someday soon (if it hasn't happened in secret already), a human will be cloned, and mankind will embark on a scientific and moral journey whose destination cannot be foretold. In Copycats: The Science and Ethics of Cloning, Arlene Judith Klotzko describes the new world of possibilities that can be glimpsed over the horizon. In a lucid and engaging narrative, she explains that the technology to create clones of living beings already exists, inaugurated in 1996 by Dolly the sheep, the (...) first mammal cloned from a single adult cell. Dolly is the culmination of a long scientific quest to understand the puzzle of our development from one cell into a complex organism--the outcome of a "fantastic experiment" envisioned six decades before her birth. Scientists have since cloned mice, cows, goats, pigs, rabbits and cats. Using the same laboratory tools and techniques, they are trying to grow an embryo, cloned from a single cell of a human being. Their goal is not to make copies of existing people, but to design therapies for currently untreatable diseases and the afflictions of old age. Our fascination with cloning is about much more than science and its extraordinary medical implications. In riveting prose, full of illusions to art, music and the cinema, Klotzko shows why the prospect of human cloning triggers our dearest hopes and especially our darkest fears, forcing us to ponder anew what it means to be human. And what it would be like to have "a clone of your own.". (shrink)

Four years after the Panama Papers scandal, tax avoidance remains an urgent moral-political problem. Moving beyond both the academic and policy mainstream, I advocate the “democratization of tax enforcement,” by which I mean systematic efforts to make tax avoiders accountable to the judgment of ordinary citizens. Both individual oligarchs and multinational corporations have access to sophisticated tax avoidance strategies that impose significant fiscal costs on democracies and exacerbate preexisting distributive and political inequalities. Yet much contemporary tax sheltering occurs within the (...) letter of the law, rendering criminal sanctions ineffective. In response, I argue for the creation of Citizen Tax Juries, deliberative minipublics empowered to scrutinize tax avoiders, demand accountability, and facilitate concrete reforms. This proposal thus responds to the wider aspiration, within contemporary democratic theory, to secure more popular control over essential economic processes. (shrink)

This essay identifies ‘oligarchic harm’ as a dire threat confronting contemporary democracies. I provide a formal standard for classifying oligarchs: those who use personal access to concentrated wealth to pursue harmful forms of discretionary influence. I then use Aristotle to think through both the moral and the epistemic dilemmas of oligarchic harm, highlighting Aristotle’s concerns about the difficulties of using wealth as a ‘proxy’ for virtue. While Aristotle’s thought provides great resources for diagnosing oligarchic threats, it proves less useful as (...) a guide to democratic institutional design. Aristotle raises a deep-seated objection to democratic forms of ‘rule by the poor.’ A successful response to oligarchy must move beyond Aristotle’s objection and affirm the demos’ tripartite status as many, free, and poor. I briefly outline the terms of this ‘new’ mixed regime: one that seeks to tame oligarchy through a mixture of aggregative, deliberative, and plebeian institutions. (shrink)

This article tackles the issue of offshore tax sheltering from the perspective of normative political realism. Tax sheltering is a pressing contemporary policy challenge, with hundreds of billions in private assets protected in offshore trusts and shell companies. Indeed, tax sheltering produces a variety of empirical dilemmas that render it a distinctive challenge for global governance. Therefore, it is crucial for normative political theorists to confront this problem. A realist approach offers three distinct advantages, elaborated in the three subsequent sections (...) of the article. First, it relaxes the theoretical burden by starting from the real practice of tax evasion rather than from an abstract theory of equality or justice. Second, this approach recognizes that sheltering is a political harm: a threat to the very maintenance of order, not just a problem of inequality or injustice. If politicians fail at such polity maintenance, realism's ethic of responsibility provides clear political reasons why they should be held accountable. Third, realism's focus on power and its acceptance of coercion open up new strategies for addressing the problem that would not be allowed by theories with a stronger emphasis on consensus. (shrink)

This chapter focuses on developing an experimental technique for inducing flow and creating instances of effortless action in the laboratory. The effort to experimentally induce flow involves two conditions which are correlated with the flow state: The firstis the idea that the challenges of a given task are well within one’s capabilities; the other involves perceived goals and immediate feedback from the given task. The chapter explores these factors along with other contextual factors, including autonomy and distractions, to experimentally induce (...) flow and demonstrate instances of effortless action in the laboratory. One of the most extensively used approaches for experimental induction of flow in the laboratory involves exploring difficulty levels of video games. (shrink)

The traditional college student of today is part of the Net Generation who has been raised in an era of instant access. Their communication and learning is complemented by the Internet, a major influence on this cohort. The regular method of contact is text messaging, instant messaging and cell phones. Learning methods for the Net Generation include Internet tools such as Web-CT, Blackboard, online courses, online journals and i-pod downloads. Are they ready to also change from print textbooks to Internet (...) based textbooks? This paper describes the attitudes of some Net Generation students towards the usage of electronic textbooks. Three case studies were conducted: one class used an online textbook and two other classes used e-chapter supplements. Students were questioned on their perceptions of using and learning with e-textbooks. Their views describe some changing thoughts towards network connected media that is the mantra of this generation. (shrink)

This encyclopedia presents important research on ethics. The five set volume includes discussions on religious, spiritual, economic, political, medical, environmental, and business ethics.

This article analyses how child victims of abuse may be subjected to hermeneutical injustice. I start by explaining how child victims are hermeneutically marginalised by adults’ social and epistemic authority, and the stigma around child abuse. In understanding their abuse, I highlight two epistemic obstacles child victims may face: (i) lack of access to concepts of child abuse, thereby causing victims not to know what abuse is; and (ii) myths of child abuse causing misunderstandings of abuse. When these epistemic obstacles (...) cause the child victims to fail to see themselves as being abused and/or to get adults to recognise that they are being abused, I argue that this constitutes hermeneutical injustice. While some may justify obstructing epistemic access to concepts of abuse on the grounds of parental rights and protection of children’s innocence, I reply that both grounds are unjust in light of children’s basic rights and the fact that children can easily be taught such concepts in a child-appropriate manner. The case of child abuse prompts important reflections on existing epistemic injustice literature, particularly on the ways in which hermeneutical injustice materialises, the epistemic responsibilities of institutional bodies and individuals, and the interrelationship between testimonial and hermeneutical injustice. (shrink)

This philosophical treatise on the foundations of semantics is a systematic effort to clarify, deepen, and defend the classical doctrine that words are conventional signs of mental states, principally thoughts and ideas, and that meaning consists in their expression. This expression theory of meaning is developed by carrying out the Gricean program, explaining what it is for words to have meaning in terms of speaker meaning, and what it is for a speaker to mean something in terms of intention. But (...) Grice's own formulations are rejected and alternatives developed. The foundations of the expression theory are explored at length, and the author develops the theory of thought as a fundamental cognitive phenomenon distinct from belief and desire, argues for the thesis that thoughts have parts, and identifies ideas or concepts with parts of thoughts. This book will appeal to students and professionals interested in the philosophy of language. (shrink)

This study was conducted to determine the appropriateness and potential of a set of books as a resource for infusing character education in a social studies classroom. Based on a research review, the literature chosen was the past decade (2001–2011) of Newbery-Award winning books. As recipients of perhaps the most prestigious award for children's literature, Newbery books were of exceptional quality and widely available. Narrative analysis ( Neuendorf, 2002 ) allowed us to explore their suitability for character education. The Josepheson (...) Institute's character pillars, the Katz and Braly List of Verbal Stereotypes, identification of moral dilemmas in these stories, and factors of race, gender, and disability provided tools for coding elements as part of the narrative-analysis methodology. Additional literacy and social studies activities were developed to enhance peer interaction, a component determined essential to future programs ( Berkowitz & Bier, 2005 ). Ultimately these 10 books were deemed viable tools for addressing character education. The authors found a key benefit of our process to be the messy self-examination, the inward look at one's own values, beliefs, and behaviors, and the subsequent interaction and collaboration that either validated or challenged those beliefs. (shrink)

Intersex people first began to publicly tell their stories in the 1990s. Twenty years on, these narratives, scorching in their candor, attest to a continuing failure to bear witness to or to acknowledge some of the most painful experiences we inflict on one another. More than anecdotes, these narratives provide a first–person reflection on care and thus represent a type of long–term follow–up that is largely absent in clinical literature. Out of respect for their courage, we owe these narratives serious (...) consideration. Clinicians who must make daily decisions that may alter patients’ lives may distance themselves from negative outcomes and stories like those told here to avoid professional regret. Honest self–appraisal and accepting regret open the door to feeling guilty, devalued and ashamed, but experiencing these emotions can be a crucial first step in changing clinical practice. (shrink)

This article addresses the lack of gender specificity in immigration literature on ethnic economies. In particular women's work in income-generating economic activity in ethnic enterprises is unveiled. Immigrant Iranian women's combined utilization of ethnic, gender, and class resources in the ethnic economy of Los Angeles is examined through two case studies of women's entrepreneurial endeavors in family-run businesses and in home-operated businesses. This article illustrates how ethnic resources are gender specific and that there is differential access to these resources in (...) the ethnic economy. (shrink)