Stresses on healthcare systems and moral distress among clinicians are urgent, intertwined bioethical problems in contemporary healthcare. Yet conceptualizations of moral distress in bioethical inquiry often overlook a range of routine threats to professional integrity in healthcare work. Using examples from our research on frontline physicians working during the COVID-19 pandemic, this article clarifies conceptual distinctions between moral distress, moral injury, and moral stress and illustrates how these concepts operate together in healthcare work. Drawing from the philosophy of healthcare, we (...) explain how moral stress results from the normal operations of overstressed systems; unlike moral distress and moral injury, it may not involve a sense of powerlessness concerning patient care. The analysis of moral stress directs attention beyond the individual, to stress-generating systemic factors. We conclude by reflecting on how and why this conceptual clarity matters for improving clinicians’ professional wellbeing, and offer preliminary pathways for intervention. (shrink)

The need for informed analyses of health policy is now greater than ever. The twelve essays in this volume show that public debates routinely bypass complex ethical, sociocultural, historical, and political questions about how we should address ideals of justice and equality in health care. Integrating perspectives from the humanities, social sciences, medicine, and public health, this volume illuminates the relationships between justice and health inequalities to enrich debates. Understanding Health Inequalities and Justice explores three questions: How do scholars approach (...) relations between health inequalities and ideals of justice? When do justice considerations inform solutions to health inequalities, and how do specific health inequalities affect perceptions of injustice? And how can diverse scholarly approaches contribute to better health policy? From addressing patient agency in an inequitable health care environment to examining how scholars of social justice and health care amass evidence, this volume promotes a richer understanding of health and justice and how to achieve both. -/- The contributors are Judith C. Barker, Paula Braveman, Paul Brodwin, Jami Suki Chang, Debra DeBruin, Leslie A. Dubbin, Sarah Horton, Carla C. Keirns, J. Paul Kelleher, Nicholas B. King, Eva Feder Kittay, Joan Liaschenko, Anne Drapkin Lyerly, Mary Faith Marshall, Carolyn Moxley Rouse, Jennifer Prah Ruger, and Janet K. Shim. (shrink)

This article studies the conceptions of social justice of women active in transnational migrant politics over a period of roughly 20 years in the Netherlands. The novel focus on migrant women reveals that transnational politics is almost completely male-dominated and -directed. Two of the exceptions found in this article include a leftist and a Kurdish women organization supporting the communist cause in the 1980s and the Kurdish struggle in the 1990s in Turkey, respectively. In both organizations gender equality was subordinated (...) to broader ideologies of political parties in their homeland. Leftist activists in the cold war era supported a narrow definition of the "politics of redistribution," while and Kurdish activists, combined classical features of the latter with those of traditional identity politics. (shrink)

This essay series attempts to stimulate the debate about the moral challenges that internationalisation confronts us with, both in the Netherlands and abroad, and in particular for Artist-in-Residencies (AIRs). The publication is a reflection on how the crisis is reconsidering our international ambitions, starting from a post-COVID society. Internationalisation is an inevitable reality, inherent to the art landscape. The current time calls for a critical reflection on major issues such as climate inequality, plurality and the Western-dominant canon. 0With contributions and (...) critical insights by Jeanne van Heeswijk, Jack Segbars, Erik Hagoort, Pascal Gielen, Cecilia Bengtsson, Merlijn Twaalfhoven, Hicham Khalidi, reinaart vanhoe and Suzanne van der Beek. Thanks to Jan van Eyck Academie, Mondriaan Fonds, Prins Bernhard Cultuurfonds en het Amsterdams Fonds voor de Kunst for their support. (shrink)

Volume 19, Issue 10, October 2019, Page 97-98.

There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided guidance (...) in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 18-20, October 2012.

Hornsby defiende una interpretación muy particular de la distinción personal-subpersonal tal como fue propuesta por Dennett y de la doctrina filosófica en la que está enraizada esta distinción. Según Hornsby de la aceptación de la distinción y la doctrina se sigue una defensa de la autonomía explicativa del nivel personal. Esta defensa nos compromete con un nivel personal genuino de explicación y la idea de que los hechos subpersonales no explican hechos personales. Hornsby sostiene, además, que mientras que en Dennett (...) se defiende la autonomía del nivel explicativo personal, en Dennett post-1969 al modificarse la doctrina de base cambia la manera de entender la distinción y con ello se reniega de ambos compromisos, de lo cual se sigue un abandono de la tesis de la autonomía del nivel explicativo personal. La tesis que vamos a sostener en este trabajo es que si bien la distinción de Dennett nos compromete con , no nos compromete con . Dado que una defensa de la autonomía explicativa del nivel personal, tal como Hornsby la entiende, abarca ambos compromisos, se sigue que no hay tal defensa. En consecuencia, si bien hay algunas cuestiones que en Dennett no se plantean de manera tan explícita y clara como en Dennett post-1969, no hay un cambio sustancial en su concepción de la distinción.According to Hornsby , Dennett's personal-subpersonal distinction has as one of its consequences a defense of the autonomy of personal level explanation, and this defense is based on two commitments: the personal level is a genuine level of explanation, and subpersonal facts do not explain personal facts. Moreover, Hornsby argues that Dennett post-1969 rejects both commitments, and that he consequently abandons the autonomy thesis. In this paper we shall argue that, although Dennett's distinction is committed to , it is not committed to . Given that a defense of the autonomy, as Hornsby understands it, presupposes both commitments, it follows that there is no such defense. We hold that there is no substantial change in Dennett's conception of the distinction, although some of these issues are not as clear and explicit in Dennett 1969 as in Dennett post-1969. (shrink)

Genomic sequencing is becoming more common both in clinical practice and as a routine aspect of much research. Over the last 15 years there has been ongoing discussion about the implications of gen...

This case is about a study of burn patients that included a request to the IRB for a waiver of consent for perianal specimen collection–a request which ultimately was not approved by a reviewing IR...

Volume 19, Issue 11, November 2019, Page 39-41.

Dans les stations de tourisme de montagne, les intersaisons correspondent à des creux d’activité durant lesquels les offres d’emploi alternatives sont peu nombreuses. Les saisonniers se trouvent donc confrontés à une période de chômage cyclique. Cette situation « intermédiaire », réunissant une forme d’incertitude de la relation d’emploi ainsi qu’une relative prévisibilité des périodes de recrutement n’est pas sans susciter certaines controverses. Dans ce contexte, comment sont vécues les phases de chômage saisonnier dans ces territoires? Ces séquences temporelles correspondent-elles à (...) un « temps mort » ou à un temps pluriel? Comment se négocie le temps pour soi dans le cadre d’embauches à contre-rythmes des temps sociaux dominants? Dans le cadre de cette forme d’emploi intermittente, le temps de chômage peut-il être conçu comme un temps de construction de la carrière professionnelle? Cet article s’intéresse aux formes d’adaptation aux rythmes d’emploi et de chômage des saisonniers en montagne et montre comment ces périodes hors-emploi participent de l’intériorisation de rythmicités spécifiques. (shrink)

El realismo intencional acérrimo quiere dos cosas que, según intentaré mostrar, son difíciles de lograr conjuntamente: estados con contenido semánticamente interpretable y que tengan rol causal en la producción de la conducta. Si bien no hay dificultades para obtener, el problema es con. La estrategia del RIA consiste en postular la existencia de leyes intencionales causales. El problema es que esas leyes son de un estatus dudoso, al punto que muchos consideran que no son posibles y ni siquiera necesarias. Según (...) el RIA, si no se puede obtener conjuntamente y se desprenderían dos consecuencias indeseables: si los estados intencionales no tienen rol causal qua intencionales significaría que no se es realista acerca de las creencias y deseos; y que no sean posibles las leyes intencionales implicaría que no se puede tener una psicología científica. En la primera parte del trabajo me ocuparé de exponer las tesis del RIA y mostraré que no puede cumplir conjuntamente con las exigencias y. En la segunda parte me ocuparé de defender la idea de que del hecho de que no se pueda conciliar y no se sigue un eliminativismo acerca de los estados intencionales ni la imposibilidad de que la psicología sea una ciencia. The Hairy Intentional Realism aims for two things that I shall try to show are difficult to jointly obtain: states with an interpretable semantic content, and with causal role in the production of behavior. There is no difficulty in obtaining, the problem is with. HIR's strategy consists in the postulation of causal intentional laws. The problem is that these laws have a doubtful status to the point that many consider them not possible and not even necessary. According to HIR, if and cannot be jointly obtained, two unwanted consequences emerge: if intentional states do not have a causal role qua intentional, that would mean ceasing to be realistic about them; and if intentional laws are not possible that would imply that we could not have a scientific psychology. In the first part of this paper I shall exhibit HIR's main theses and I shall show that it cannot accomplish the two demands. Second, I shall defend the idea that because of the fact that and cannot be reconciled, neither an eliminativism about intentional states, nor the impossibility that psychology is a science can follow. (shrink)

Eyal et al have recently argued that researchers should consider conducting severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) human challenge studies to hasten vaccine development. We have conducted (J. L.) and overseen (L. D.) human challenge studies and agree that they can be useful in developing anti-infective agents. We also agree that adults can autonomously choose to undergo risks with no prospect of direct benefit to themselves. However, we disagree that SARS-CoV-2 challenge studies are ethically appropriate at this time, for (...) 3 reasons: (1) current scientific knowledge of SARS-CoV-2 infection is insufficient to manage risks; (2) autonomous decision making, while necessary, does not override concerns about risk; and (3) undertaking challenge studies now would imperil confidence in the research enterprise, potentially undermining the global response to the coronavirus disease 2019 (COVID-19) pandemic. (shrink)

As medicine and science advance, new ethical questions emerge. Over time, deliberation and analysis result in a somewhat settled approach to a problem. Often the settled approach is based on group...

As part of the regulatory review process, both the Food and Drug Administration and Office for Human Research Protections (U.S. Department of Health and Human Services [HHS]...

Despite recent advances in HIV prevention and treatment, high HIV incidence persists among people who inject drugs. Difficult legal and political environments and lack of services for PWID likely contribute to high HIV incidence. Some advocates question whether any HIV prevention research is ethically justified in settings where healthcare system fails to provide basic services to PWID and where implementation of research findings is fraught with political barriers. Ethical challenges in research with PWID include concern about whether research evidence will (...) be translated into practice; concerns that research might exacerbate background risks; and ethical challenges regarding the standard of HIV prevention in research. While these questions arise in other research settings, for research with PWID, these questions are especially controversial. This paper analyses four ethical questions in determining whether research could be ethically acceptable: Can researchers ensure that research does not add to the burden of social harms and poor health experienced by PWID? Should research be conducted in settings where it is uncertain whether research findings will be translated into practice? When best practices in prevention and care are not locally available, what standard of care and prevention is ethically appropriate? Does the conduct of research in settings with oppressive policies constitute complicity? We outline specific criteria to address these four ethical challenges. We also urge researchers to join the call to action for policy change to provide proven safe and effective HIV prevention and harm reduction interventions for PWID around the world. (shrink)

Despite recent advances in HIV prevention and treatment, high HIV incidence persists among people who inject drugs. Difficult legal and political environments and lack of services for PWID likely contribute to high HIV incidence. Some advocates question whether any HIV prevention research is ethically justified in settings where healthcare system fails to provide basic services to PWID and where implementation of research findings is fraught with political barriers. Ethical challenges in research with PWID include concern about whether research evidence will (...) be translated into practice; concerns that research might exacerbate background risks; and ethical challenges regarding the standard of HIV prevention in research. While these questions arise in other research settings, for research with PWID, these questions are especially controversial. This paper analyses four ethical questions in determining whether research could be ethically acceptable: Can researchers ensure that research does not add to the burden of social harms and poor health experienced by PWID? Should research be conducted in settings where it is uncertain whether research findings will be translated into practice? When best practices in prevention and care are not locally available, what standard of care and prevention is ethically appropriate? Does the conduct of research in settings with oppressive policies constitute complicity? We outline specific criteria to address these four ethical challenges. We also urge researchers to join the call to action for policy change to provide proven safe and effective HIV prevention and harm reduction interventions for PWID around the world. (shrink)

This essay looks closely at metaphors and other figures of speech that often feature in how Americans talk about dementia, becoming part of cultural narratives: shared stories that convey ideas and values, and also worries and fears. It uses approaches from literary studies to analyze how cultural narratives about dementia may surface in conversations with family members or health care professionals. This essay also draws on research on a notable social effect of legalizing medical aid in dying: patients may find (...) it easier to bring up a range of concerns, regardless of whether they have any interest in hastening their own death. The essay proposes that health care professionals rethink an idea prominent within their own culture: that conversations about the end of a person's life are inherently difficult. This framing may make it hard for people facing dementia to bring up their concerns about what lies ahead. We suggest a different way to think about these conversations, using the metaphor of “opening the door” to represent inviting a patient to bring up issues of deepest concern. (shrink)

Volume 20, Issue 10, October 2020, Page 82-83.

Volume 20, Issue 4, May 2020, Page 111-113.

This paper examines how three Dutch political parties employ the Internet as a tool to enhance ‘digital democracy’. The potential of digital democracy is considered to be strongest in the sphere of collective action outside the domain of political institutions. In this article, however, attention is given to how institutionalized channels might be supportive of digital democracy. Three components of the democratic process – information provision, deliberation, and political decision-making – are examined in the content and user assessments of the (...) web sites of the Socialist Party, the Christian Democratic Party and the Green Party. Minor differences were found in the party web sites regarding information provision; substantial differences were found regarding the degree and nature of political deliberation available on the sites. Indicators of the third component, political decision-making, were least evident on all three web sites. User assessments of the sites and opportunities for political deliberation followed, more or less, the general public images of the related political parties. (shrink)

Emergency nurses apply specialist knowledge to the practice of emergency care. This paper discusses the ways in which three emergency nurses understand the nature of their care from their own frames of reference and experiences and presents some of the data collected in a larger study. Various discourses, which compete to inform emergency nurses' understandings of practice, are linked with the notion of nurses as subjects; that is, each discourse may inform, shape and constitute the practice of the nurse and, (...) in turn, the ways in which the patient comes to be known and understood. I will examine the ways in which emergency nurses come to experience or position themselves vis‐à‐vis extant forms of knowledge of emergency care and the extent to which they articulate new or distinctive formulations of emergency care. This paper illuminates the commonalities that constitute the discourses of emergency nursing care, and also analyse nurses' language which demonstrates that within each discourse variations, contradictions and resistances exist. Emergency nursing care occurs in a context of a biomedical discourse that dominates, or tends to dominate, the work of the emergency setting and so to determine acceptable or possible practices. Nevertheless, nurses contest in various ways the ‘truths' that they understand to underpin their practice. Challenges to biomedical discourses are revealed, to some extent, by drawing attention to specific situations and particular struggles encountered in emergency nurses' everyday practice. (shrink)

Methodologies of poststructuralist theory and critical social theory may be appropriated for nursing research and practice. Researchers using either methodology employ an analysis of power to explore experiences in various fields, and raise issues diat are highly relevant to nursing. However, the two methodologies differ and, often, die respective dieories are sharply opposed. In diis paper, die differences bodi from widiin and between each approach are explored, showing dieir tensions and limits. I contend that a reflexive approach to discourse analysis (...) provides insight into some of die methodological challenges diat arise in die context of bodi dieories. It is argued diat die differences between poststructuralism and critical social dieory seem likely to be mellowed by encounters diat treat each other with respect. To some extent, such encounters may tend to converge die two positions. (shrink)

Bioethical concerns about the potential for abuse in medical aid in dying (MAID) have focused primarily on the risk of coercion (Battin et al. 2007; Foley and Hendin 2002). Accordingly, the require...

ZusammenfassungDie Erforschung der Antarktis galt um 1900 als eine der letzten großen Herausforderungen im Zuge der Erschließung der Welt. Viele Nationen beteiligten sich daran, darunter das deutsche Kaiserreich. So fanden im Jahrzehnt vor dem Ersten Weltkrieg auch zwei deutsche Antarktisexpeditionen statt: von 1901 bis 1903 unter der Leitung von Erich von Drygalski und in den Jahren 1911/12 unter der Leitung Wilhelm Filchners. Die Forschung hat das Verhältnis zwischen den Unternehmen der verschiedenen Nationen bislang oftmals mit einem Fokus entweder auf Wettbewerb (...) oder Zusammenarbeit beschrieben. Dieser Aufsatz zeigt, dass internationale Kooperation und Konkurrenz die deutsche Antarktisexploration in spannungsreicher Gleichzeitigkeit prägten. Dabei nutzten die Akteure von Beginn an beide Interaktionsmodi als argumentative Ressourcen und verfolgten bewusst und situativ variabel Handlungsoptionen nach sowohl kompetitiven als auch kooperativen Logiken. Die Akteure bemühten sich darum, keinen der beiden Modi überwiegen zu lassen, sondern ein Gleichgewicht zu wahren, um die sowohl aus Wettbewerb als auch aus Zusammenarbeit entstehenden Vorteile für sich nutzen zu können. Gerade die genauen Kriterien der Konkurrenz wurden dabei zum Teil in der Schwebe gehalten, um sich hier alle Möglichkeiten offen zu halten. Bei der retrospektiven Bewertung ihrer Expeditionen durch die deutsche Öffentlichkeit gelang es ihnen jedoch nicht, die Deutungshoheit über Erfolg und Misserfolg der Unternehmen zu gewinnen: Weder der Verweis auf erfolgreiche Kooperationen, noch auf den Sieg im Wettbewerb um wissenschaftliche Leistungen konnte in der öffentlichen Wahrnehmung im deutschen Kaiserreich die Niederlage beim Erreichen möglichst südlicher Breiten ausgleichen. (shrink)

Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with 24 people living with HIV who had (...) been previously incarcerated in county jails about their perspectives on and experiences with HIV surveillance, as part of a larger study to characterize ethical considerations in leveraging big data techniques to enhance continuity of care for incarcerated people living with HIV. -/- Results Most participants expressed support for the state health department tracking HIV testing results and viral load data. Several viewed HIV surveillance as a violation of privacy, and several had actively avoided contact from state public health outreach workers. Participants were most likely to express reservations about surveillance when they viewed the state’s motives as self-interested. Perspectives highlight the mistrust that structurally vulnerable people may have in the state’s capacity to act as an agent of welfare. Findings suggest that adopting a nuanced, context-sensitive view on surveillance is essential. -/- Conclusions Establishing trustworthiness through interpersonal interactions with public health personnel is important to reversing historical legacies of harm to racial minorities and structurally vulnerable groups. Empowering stakeholders to participate in the design and implementation of data infrastructure and governance is critical for advancing a data justice agenda, and can offset privacy concerns. The next steps in advancing the data justice framework in public health surveillance will be to innovate ways to represent the voices of structurally vulnerable groups in the design and governance of big data initiatives. (shrink)

“It's almost like putting salt in a wound, for this person who's already made a very difficult decision,” suggested Meghan Patterson, a licensed obstetrician-gynecologist whom we interviewed in our qualitative study of the experiences of North Carolina abortion providers practicing under the state's Woman's Right to Know Act. The act requires that women receive counseling with state-mandated information at least twenty-four hours prior to obtaining an abortion. After the law was passed, Patterson worked with clinic administrators, in consultation with a (...) lawyer, to write a script to be used in the state-mandated counseling procedure. She and her colleagues took particular steps to mitigate the effects of what she described as HB 854's “forced language”—such as referring to the “father of the child.” While HB 854 stipulated that patients must be informed of the medical risks associated with the particular abortion procedure as well as those of carrying the child to term, Patterson's script made explicit the magnitude of comparative risks, emphasizing that the risks of carrying a pregnancy to term are substantially greater than the risks of an early-term abortion. She felt that these contextualization strategies helped to facilitate trust and rapport in a clinical care situation that proved relationally and morally challenging. In this article, we take up and expand on this point by elucidating an empirically grounded approach to ethically justified care when health care providers face legal or institutional policy mandates that raise possible moral conflicts. Our approach builds on recent bioethics discourse addressing conscience in the practice of medicine. While the concept of conscience has broad philosophical underpinnings relating to moral judgment, agency, and discernments of right and wrong, debates in bioethics have tended to engage the concept primarily vis-à-vis rights of conscientious objection or refusal. Here, we suggest a broader frame for thinking about claims of conscience in health care. Our approach draws on the feminist bioethics and the ethics of care literatures to highlight how providers may be motivated by matters of conscience, including relational concerns, in the active provision of certain forms of care. What emerges are two possibilities: not only conscientious refusal to comply with a policy mandate but also conscientious compliance—working conscientiously within a mandate's confines. (shrink)

In this paper Grice's requirements for assertability are imposed on the disjunction of Classical Logic. Defining material implication in terms of negation and disjunction supplemented by assertability conditions, results in the disappearance of the most important paradoxes of material implication. The resulting consequence relation displays a very strong resemblance to Schurz's conclusion-relevant consequence relation.

Informed Consent: What Must Be Disclosed and What Must Be Understood seeks to challenge the “standard view” of consent. It seeks to do so by segregating the “disclosure function” from the “understa...

Volume 20, Issue 10, October 2020, Page 39-41.

Narrative has proven itself a continuous as well as adaptable means for environmentally oriented expression. Its role goes beyond the mediation of pre-existing knowledge imported into the realm of storytelling from other domains; rather, influential models of the natural world tend to circulate as storyworlds. This special issue of SubStance proceeds from the premise that narratives are not only a sequence of signs encoding a story but also “invisible, elusive representations that exist only in the mind”. Narrative forms generate and (...) transfer environmental knowledge; moreover, any specifically narrative concerns are important contributing factors to the models of agency, change... (shrink)