This is an essay based on a story with observations, about present and sparkling moments from everyday life coexisting with a mother living with dementia. The story is used to begin philosophical underpinnings reflecting on ‘how it could be otherwise’. Dementia deploys brutal existential experiences such as cognitive deterioration, decline in mental functioning and often hurtful social judgements. The person living with dementia goes through transformation and changes of self. Cognitive decline progressively disrupts the foundations upon which social connectedness is (...) built, often creating a profound sense of insecurity. The challenge for carers and healthcare professionals is therefore to find ways of clarifying a concept of agency. It will be worthwhile developing the ability of attuning into ‘what is there’ arising from every corner of the care situation. Understanding and practicing this can strengthen existence and the experience of connectedness and meaning, empowering the person with dementia. It is important to find ways, relational moves, in which carers and healthcare professionals can embed the creativity appearing in mundane everyday situations filled with surplus of meaning, sharing mental landscapes (and embodied relational understanding) with the person living with dementia – seizing and sharing aesthetic moments (verbal and nonverbal) being present together. We argue that carers and healthcare professionals may find this understanding of care useful. This implies looking into a phenomenological‐hermeneutic perspective developing competences as well as practical wisdom understanding and being aware of the creative and innovative possibilities (often preverbal and unnoticed small things) in everyday life of what we, inspired by psychoanalyst Daniel Stern, call sparkling moments of meeting, creating experience with the other that is personally undergone and lived through in the present. (shrink)

As a neonatal neurologist, I serve families facing tragic decisions in which they must balance trade-offs between death and life with profound disability. I often find myself in complex discussions about future outcome, in which families sort through in real-time what information they value most in making such a choice. Will he laugh? Will he be in pain? Will he know how much he’s loved? In this month’s feature article, Brick et al share the results of an online survey aimed (...) at assessing public views on when a life is not worth living, in an effort to inform ongoing legal and clinical debates about withdrawal of life-sustaining treatment for children. These findings raise important questions about how we define and measure outcomes that matter to parents as they make these tragic decisions. It is challenging to interpret these findings in the absence of context of how decision-making for infants occurs in real-time. The nature of this study and its objective required that cases be substantially simplified. As the authors acknowledge, the prognoses and function of the children involved in these cases were often deeply contested. Prognostic uncertainty is common for children with significant …. (shrink)

Volume 19, Issue 5, May 2019, Page 62-63.

Initial vaccine allocations for the coronavirus disease 2019 (COVID-19) will be limited. It is crucial to assess the ethical values associated with different methods of allocation, as well as important scientific and practical questions. This Viewpoint identifies three ethical values, benefiting people and limiting harm; prioritizing disadvantaged populations; and equal concern for all. It then explains why these values support prioritizing three groups: health care workers; other essential workers and people in high-transmission settings; and people with medical vulnerabilities associated with (...) poorer COVID-19 outcomes. In contrast, two other groups, people over 65 without medical vulnerabilities and participants in clinical research, present more complex ethical questions. This prioritization also encompasses valuing direct benefits to vaccinated individuals, indirect benefits to individuals protected from spread of infection, and indirect health and socioeconomic benefits to those protected from harm as health system and societal functioning improve. Vaccine allocation that recognizes important ethical values and avoids arbitrariness, waste, and corruption can ensure that the distribution of a COVID-19 vaccine is both fair and perceived as fair. (shrink)

Is the relationship of self-moving (kinaesthesis) to itself a direct pre-reflective self-awareness, or is it mediated through an Other? This article attempts to address this question, taking the phenomenon of dance as a point of departure, since in dance, movement steps out of its everyday background function to become the principal theme. Rudolf zur Lippe extracts from a dance step of the dances of the Quattrocento, the posa, a concept of sensual reflection. Rather than a conceptual reflection, the posa can (...) be understood as an awareness of one’s own movement. In this article, in a dialogue between critical philosophy, dance science, and phenomenology, terms of a possible sensual reflection in dance will be discussed. (shrink)

The possible integration of genomic sequencing (including whole‐genome and whole‐exome sequencing) into the three contexts addressed in this special report—state‐mandated screening programs, clinical care, and direct‐to‐consumer services—raises related but distinct legal issues. This essay will outline the legal issues surrounding the integration of genomic sequencing into state newborn screening programs, parental rights to refuse and access sequencing for their newborns in clinical and direct‐to‐consumer care, and privacy‐related legal issues attending the use of sequencing in newborns.

The U.S. FDA has issued emergency use authorizations for monoclonal antibodies for non-hospitalized patients with mild or moderate COVID-19 disease and for individuals exposed to COVID-19 as post-exposure prophylaxis. One EUA for an oral antiviral drug, molnupiravir, has also been recommended by FDA’s Antimicrobial Drugs Advisory Committee, and others appear likely in the near future. Due to increased demand because of the Delta variant, the federal government resumed control over the supply and asked states to ration doses. As future variants (...) with increased infectivity and/or severity emerge, further rationing may be required. We identify relevant ethical principles and priority groups for access to therapies based on an integrated approach to population health and medical factors. Using priority categories to allocate scarce therapies effectively operationalizes important ethical values. This strategy is preferable to the current approach of categorical rules based on vaccination, immunocompromise status, or older age, or the ad hoc consideration of clinical risk factors. (shrink)

In recent years, many studies have highlighted the changing nature of scholarly research, reflecting the new digital tools and techniques that have been developed. But researcher uptake of these tools is strongly influenced by existing information behaviour, itself affected by a number of factors, particularly discipline. This article outlines findings from a recent study which used six case studies to look at the information behaviours of researchers working in different disciplinary fields or academic departments, or using specific tools. The study (...) suggested that researchers’ uses of, and attitudes towards, digital technologies are affected by existing disciplinary habits and preconceptions. Furthermore, it found that the computational and collaborative complexity of the tools that researchers used was linked to their disciplinary backgrounds. (shrink)

Significant scientific and technological advances in intensive care have been made. However, patients in the intensive care unit may experience discomfort, loss of control, and surreal experiences. This has generated relevant debates about how to humanize the intensive care units and whether humanization is necessary at all. This paper aimed to explore how humanizing intensive care is described in the literature. A scoping review was performed. Studies published between 01.01.1999 and 02.03.2020 were identified in the CINAHL, Embase, PubMed, and Scopus (...) databases. After removing 185 duplicates, 363 papers were screened by title and abstract. Full-text screening of 116 papers led to the inclusion of 68 papers in the review based on the inclusion criteria; these papers mentioned humanizing or dehumanizing intensive care in the title or abstract. Humanizing care was defined as holistic care, as a general attitude of professionals toward patients and relatives and an organizational ideal encompassing all subjects of the healthcare system. Technology was considered an integral component of intensive care that must be balanced with caring for the patient as a whole and autonomous person. This holistic view of patients and relatives could ameliorate the negative effects of technology. There were geographical differences and the large number of studies from Spain and Brazil reflect the growing interest in humanizing intensive care in these particular countries. In conclusion, a more holistic approach with a greater emphasis on the individual patient, relatives, and social context is the foundation for humanizing intensive care, as reflected in the attitudes of nurses and other healthcare professionals. Demands for mastering technology may dominate nurses’ attention toward patients and relatives; therefore, humanized intensive care requires a holistic attitude from health professionals and organizations toward patients and relatives. Healthcare organizations, society, and regulatory frameworks demanding humanized intensive care may enforce humanized intensive care. (shrink)

Background: Background: In general, qualitative research design often involves merging together various data collection strategies, and researcher’s may need to be prepared to spend longer periods in the field to pursue data collection opportunities that were not foreseen. Furthermore, nurse researchers performing qualitative research among patients and their relatives often experience unforeseen ethical dilemmas. Aim: This paper aimed to explore aspects of ethical dilemmas related to qualitative nursing research among patients and their relatives in the intensive care unit (ICU). Research (...) design: This paper is based on a qualitative researcher’s personal experience during a hermeneutic phenomenological study involving close observation and in-depth interviews with 11 intensive care nurses. Data were collected at two ICUs in two Norwegian university hospitals. Ethical considerations: The study was approved by the Norwegian Social Science Data Services (NSD). The Regional Committee for Medical and Health Research Ethics (REK) granted dispensation to the project regarding health personnels confidentiality of the patients who were present during the observation (2012/622-4). Findings: Close observation with nurses in the ICU requires the researcher to balance being a qualitative researcher, an ICU nurse and a sensitive fellow human being open to the suffering of the other—that is, being embodied, engaged and affected by sensitive situations and simultaneously constantly stepping back and reflecting on the meaning of those situations. Conclusions: The qualitative researcher’s ethical awareness also entails knowing and acknowledging his or her own vulnerability, which becomes apparent in the researcher-participant relationship and settings in which being a fellow human always overrules the researcher’s role in ethical dilemmas. (shrink)

We propose 4 equity-advancing operational improvements to eligibility and sign-up processes at mass vaccination sites: (1) preregistration using existing information, (2) eligibility rules that recognize the greater burden of COVID-19 in underserved neighborhoods, (3) appointment assignment that prioritizes those with disadvantage, and (4) socioculturally informed outreach to lottery selectees.

For much of 2021, allocating the scarce supply of Covid‐19 vaccines was the world's most pressing bioethical challenge, and similar challenges may recur for novel therapies and future vaccines. In the United States, the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices (ACIP) identified three fundamental ethical principles to guide the process: maximize benefits, promote justice, and mitigate health inequities. We argue that critical components of the recommended protocol were internally inconsistent with these principles. Specifically, the ACIP (...) violated its principles by recommending overly broad health care worker priority in phase 1a, using being at least seventy‐five years of age as the only criterion to identify individuals at high risk of death from Covid‐19 during phase 1b, failing to recommend place‐based vaccine distribution, and implicitly endorsing first‐come, first‐served allocation. More rigorous empirical work and the development of a complete ethical framework that recognizes trade‐offs between principles may have prevented these mistakes and saved lives. (shrink)

Pragmatic randomized controlled trials are designed to evaluate the effectiveness of interventions in real-world clinical conditions. However, these studies raise ethical issues for researchers and regulators. Our objective is to identify a list of key ethical issues in pragmatic RCTs and highlight gaps in the ethics literature. We conducted a scoping review of articles addressing ethical aspects of pragmatic RCTs. After applying the search strategy and eligibility criteria, 36 articles were included and reviewed using content analysis. Our review identified four (...) major themes: 1) the research-practice distinction; 2) the need for consent; 3) elements that must be disclosed in the consent process; and 4) appropriate oversight by research ethics committees. 1) Most authors reject the need for a research-practice distinction in pragmatic RCTs. They argue that the distinction rests on the presumptions that research participation offers patients less benefit and greater risk than clinical practice, but neither is true in the case of pragmatic RCTs. 2) Most authors further conclude that pragmatic RCTs may proceed without informed consent or with simplified consent procedures when risks are low and consent is infeasible. 3) Authors who endorse the need for consent assert that information need only be disclosed when research participation poses incremental risks compared to clinical practice. Authors disagree as to whether randomization must be disclosed. 4) Finally, all authors view regulatory oversight as burdensome and a practical impediment to the conduct of pragmatic RCTs, and argue that oversight procedures ought to be streamlined when risks to participants are low. The current ethical discussion is framed by the assumption that the function of research oversight is to protect participants from risk. As pragmatic RCTs commonly involve usual care interventions, the risks may be minimal. This leads many to reject the research-practice distinction and question the need for informed consent. But the function of oversight should be understood broadly as protecting the liberty and welfare interest of participants and promoting public trust in research. This understanding, we suggest, will focus discussion on questions about appropriate ethical review for pragmatic RCTs. (shrink)

SummaryThis paper studies the context and textual structure of the Portuguese translation of Forbonnais's Elémens du commerce. This analysis is instrumental to understanding the place of this translation in the Portuguese discourse on trade, colonies and political economy in the age of Pombal. The translation of Forbonnais was one of the few to be published in Portugal in the eighteenth century. So, why the Elémens? This paper answers this question by profiling the translator, a key figure in the nomenklatura created (...) by Pombal to promote his commercial and colonial policies. This translation aimed at providing a theoretical background for Pombal's actions to defend Portuguese specialised agriculture against the exploitation of British traders, to substitute imported manufactures with local production, and to put colonial trade under national control. The paper also studies the contemporary debate on translation and its method in order to understand the reasons that led the translator to adopt a ‘paraphrastic style’, a choice that equated translation with a nationalistic politico-economic act, consisting in importing alien contents as ‘raw materials’ and ‘reselling’ them rephrased in what was considered the most ancient and perfect neo-Latin language. In this way, this paper also contributes to the history of translation in the Lusophone area. (shrink)

Quality and service improvement (QSI) research employs a broad range of methods to enhance the efficiency of healthcare delivery. QSI research differs from traditional healthcare research and poses unique ethical questions. Since QSI research aims to generate knowledge to enhance quality improvement efforts, should it be considered research for regulatory purposes? Is review by a research ethics committee required? Should healthcare providers be considered research participants? If participation in QSI research entails no more than minimal risk, is consent required? The (...) lack of consensus on answers to these questions highlights the need for ethical guidance. Three distinct approaches to classifying QSI research in accordance with existing ethical principles and regulations can be found in the literature. In the first approach, QSI research is viewed as distinct from other types of healthcare research and does not require regulation. In the second approach, QSI research falls within regulatory guidelines but is exempt from research ethics committee review. In the third approach, QSI research is deemed to be part of the learning healthcare system and, as such, is subject to a different set of ethical principles entirely. In this paper, we critically assess each of these views. While none of these approaches is entirely satisfactory, we argue that use of the ethical principles governing research provides the best means of addressing the numerous questions posed by QSI research. (shrink)

Philosopher Judith Butler has influenced how people talk about vulnerable bodies and sees vulnerability as universal, existential, and relational. Being vulnerable is part of the human condition. The main theoretical areas that run across Butler’s work; power, knowledge and subjectivity, performativity, and ethics—are of particular relevance to nursing practice. This review aims to explore how Butler’s theoretical work is reflected in research literature within a nursing context. We conducted a scoping review guided by Arksey and O’Malley’s methodological framework. A systematic (...) literature search of CINAHL (EBSCOhost), MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), and Web of Science identified 15 papers. Butler’s theoretical work was applied at an individual and social level in research literature within a nursing context. Nurses need to reflect on their clinical practice and role as health professionals in relation to power and performativity in encounters with patients who are marginalized. Nurses’ working conditions, recognition, and understanding are strongly influenced by society, and calling nurses heroes undermines their capacity to challenge and resist the hero identity. The healthcare system’s impact on patient-nurse encounters challenges patients’ and nurses’ subjectivity, performativity, and power relations. The review allowed us to describe how Butler’s theoretical work can facilitate a reflection on nursing practice which is a prerequisite for caring, ethical relationships, and working conditions within a nursing context. Butler’s concepts can provide useful perspectives on how nurses understand, communicate with, and care for patients, as well as a nuanced understanding of the nursing role and power relations and structures. (shrink)

It is widely assumed that informing prospective subjects about the risks and possible benefits of research not only protects their rights as autonomous decisionmakers, but also empowers them to protect their own interests. Yet interviews with patient‐subjects conducted under the auspices of the Advisory Committee on Human Radiation Experiments suggest this is not always the case. Patient‐subjects often trust their physician to guide them through decisions on research participation. Clinicians, investigators, and IRBs must assure that such trust is not misplaced.

The robust design and conduct of pragmatic cluster randomised trials may be in tension with the ethical requirement to obtain written informed consent from prospective research participants. In our experience, researchers tend to focus on whether a waiver of consent is appropriate for their studies. However, pragmatic cluster randomised trials raise other important questions that have direct implications for determining when an alteration or waiver of consent is permissible. To assist those involved in the design, conduct and review of pragmatic (...) cluster randomised trials, we outline four critical questions to consider: (1) What is the nature of the intervention being evaluated? (2) Is the choice to use cluster randomisation justified? (3) Can the risk of recruitment bias be addressed? and (4) Is an alteration or waiver of consent appropriately justified? We recommend that researchers and research ethics committees conduct a stepwise analysis of a planned cluster randomised trial using these questions. To illustrate the application of this stepwise analysis, we use three pragmatic cluster randomised trials in the haemodialysis setting as case studies. (shrink)

The last decade has seen a slow but steady increase in the number of postdoctoral scholars employed in faculties of education. In this article, seven postdoctoral scholars who worked in the same Ca...

Este trabalho investigou características sócio-demográficas e vocacionais em 59 alunos de baixa renda, de ambos os sexos, com idades entre 16 e 48 anos. A maioria já prestou vestibular e tem escolha profissional definida. Os alunos relatam possuir pouca informação sobre profissões, processo de escol..

RESUMO Este artigo problematiza certos conceitos e proposições da obra de Iuri Lotman que retratam concepções do autor sobre memória e tempo, tais como semiosfera, texto, pancronia e explosão. No âmbito das teatralidades juvenis, mapear tal escopo teórico tem por objetivo compreender a produção de memórias e as codificações temporais como instâncias comunicativas. Consideram-se objetos empíricos, as teatralidades steampunks, experimentadas em encontros presenciais. Esta análise se faz nos espaços urbanos da região Sudeste do Brasil; vale-se de pesquisa bibliográfica voltada a (...) teorias da memória; utiliza pesquisa de campo, seguindo a metodologia da flânerie em eventos frequentados por esses grupos de jovens. Espera-se demonstrar o diálogo entre a semiótica desenvolvida por Lotman e as representações mnésicas e temporais presentes nestas teatralidades. ABSTRACT This paper problematizes certain concepts and propositions of Iuri Lotman that portrayed his conceptions of memory and time, such as semiosphere, text, panchronism and explosion. In the context of juvenile theatricalities, mapping such a theoretical scope aims to understand the production of memories and the temporal codifications as communicative instances. Steampunk theatricalities experienced in face-to-face meetings are considered empirical objects. This analysis is conducted in urban areas of the Southeast of Brazil, counting on a bibliographic research focused on theories of memory, a field work following the flânerie methodology in events attended by these youth groups. It aims to demonstrate the dialogue between the semiotics developed by Lotman and the mnemonic and temporal representations present in these theatricalities. (shrink)

Dopo la Grande Guerra e la Rivoluzione d’Ottobre, l’Europa e la Russia vissero una intensa crisi. Il saggio ricostruisce la dimensione internazionale della situazione in Italia tra il 1919 e 1922. Esso si concentra in particolare su due “futuristi di sinistra”, Vinicio Paladini e Ivo Pannaggi, influenzati da Alexandr Bogdanov e Anatolij Lunačarskij, il futuro Commissario del Popolo per l’Istruzione. Esso si concentra anche sulla rivista “Vešč/Gegenstand/Objet", fondata da El Lissitzky e Ilya Ehrenburg a Berlino nel 1922, i suoi legami (...) con il Purismo francese e Pannaggi. (shrink)

O artigo tem como objetivo responder como um cognitivista moral pode aceitar o experimento de pensamento da Terra Gêmea Moral sem aceitar o Cognitivismo não-descritivista de Terence Horgan e Mark Timmons. A fim de oferecer a resposta almejada, serão expostas as conclusões semânticas que esses filósofos extraem da versão desse experimento de pensamento que se aplica ao realismo moral naturalista de Peter Railton. Será proposto que mesmo que um defensor do cognitivismo moral descritivista, como Railton, aceite a objeção de Horgan (...) e Timmons, e abandone o realismo moral naturalista, ele não precisa aderir à teoria metaética do Cognitivismo não-descritivista e à sua ontologia moral antirrealista. Ele tem como saída aderir ao Cognitivismo não-realista de Derek Parfit, que, conforme será argumentado, possivelmente é uma teoria metaética superior ao Cognitivismo não-descritivista. (shrink)

We asked a series of questions to Monica Cioli and David Rifkind, authors of two important books which focus on the process that enabled art and architecture to acquire a specific political meaning under fascism. The outcome is a dialogue that shows how the relationship between fascism and art is not characterized by a mere appropriation or a mutually functional exploitation between the artist or the architect and the fascist regime. Art prepares a specific appropriation of technology and serves (...) to introduce the political anthropology of the fascist man. Similarly, architecture establishes an organization of urban spaces coherent and necessary to the hierarchical order of the corporatist society. (shrink)

This article has, as an end in itself, the latent and pulsating objective of serving as a tool for introductory awakening to the process of racial literacy. As a further objective, I seek to point out the importance of this process in the family, institutional and social spheres, in order to minimally incite people to an anti-racist education. To this end, I start from the precision of concepts related to literacy and literacy systems, working with some concepts that are part (...) of this literacy repertoire such as race, racism and racial discrimination, in order to clarify them, so that they can be better understood in their applicability. In the second moment, to address the literacy, I start from a first question: who are the literate? Responding to this implies recognizing the place of white privilege with its implications. The other steps that make up this process are investigated throughout the article. I mainly use the elaborations of the Martinican philosopher, psychiatrist and psychoanalyst Frantz Fanon, from the work Pele Negra, Máscaras Brancas (1952), in order to, with this resumption, enter into the theme of the book by the New Zealand philosopher Annette Baier, Reflections On How We Live (2009) as a way of thinking about its feasibility, with a view to anti-racist education through racial literacy. (shrink)

Este artigo se insere no quadro maior dos estudos sobre as identidades no cristianismo antigo. A questão central é compreender de que formas as práticas populares se relacionam com o desenvolvimento e a manifestação das identidades cristãs. Como práticas populares elegemos as práticas de judaização, entre os não judeus adeptos da fé em Cristo, existentes no contexto das comunidades cristãs. A judaização é assim compreendida porque foge à instrução/controle das autoridades e da elite intelectual cristã. O recorte espaço-temporal do presente (...) estudo são as comunidades cristãs da província da Ásia Proconsular, no território imperial romano, no século II d.C. O conceito de etnicidade é empregado no exame das cartas do bispo Inácio de Antioquia a comunidades cristãs da Ásia Menor de forma a iluminar possíveis motivações para uma manutenção da judaização entre não judeus crentes em Jesus em detrimento da forte recomendação de seu abandono pelas autoridades cristãs. (shrink)

La identificación de Granada con el icono del fruto del granado en los atlas náuticos de al-Šarafī alimenta una imagen evocadora del reino nazarí, a la vez que solidaria con los exiliados moriscos en el contexto de la defensa turco-otomana del Islam en el Mediterráneo. Tanto la imagen de Granada como de la Sierra de Segura en la cartografía náutica mediterránea plantea interesantes cuestiones de tipo conceptual y estilístico pero, sobre todo, documenta la interacción entre las tradiciones magrebí-andalusí y mallorquina. (...) La carta de al-Mursī se presenta aquí como testimonio de ello. (shrink)