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)

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)

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)

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)

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)

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.

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)

Biological scientists, like scientists in other disciplines, are uncertain about whether or how to use their knowledge and time to provide society with insight and guidance in handling the effects of inventions and discoveries. This article addresses this issue. It presents a typography of structures in which scientists may contribute to social understanding and decisions. It describes the different ways in which these contributions can be made. Finally it develops the ethical arguments that justify the view that biological scientists have (...) social responsibilities. (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)

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 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...

© 2017. The American Astronomical Society. All rights reserved.We present new observations of the low-mass companion to HD 984 taken with the Gemini Planet Imager as a part of the GPI Exoplanet Survey campaign. Images of HD 984 B were obtained in the J and H bands. Combined with archival epochs from 2012 and 2014, we fit the first orbit to the companion to find an 18 au orbit with a 68% confidence interval between 14 and 28 au, an eccentricity (...) of 0.18 with a 68% confidence interval between 0.05 and 0.47, and an inclination of 119°with a 68% confidence interval between 114°and 125°. To address the considerable spectral covariance in both spectra, we present a method of splitting the spectra into low and high frequencies to analyze the spectral structure at different spatial frequencies with the proper spectral noise correlation. Using the split spectra, we compare them to known spectral types using field brown dwarf and low-mass star spectra and find a best-fit match of a field gravity M6.5 ±1.5 spectral type with a corresponding temperature of K. Photometry of the companion yields a luminosity of log=2.88 ± 0.07 dex with DUSTY models. Mass estimates, again from DUSTY models, find an age-dependent mass of 34 ±1 to 95 ±4 M Jup. These results are consistent with previous measurements of the object. (shrink)

O estatuto do simples e a questão do real: o horizonte nominalista de David Hume.

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..

El objetivo de este artículo es describir la percepción de riesgo y los factores de protección y de riesgo frente al consumo de sustancias psicoactivas legales e ilegales en estudiantes de la Universidad de Boyacá. Es un estudio cuantitativo y descriptivo de corte transversal, para el cual se tomó una muestra de 573 estudiantes que fueron seleccionados mediante muestreo estratificado probabilístico. El instrumento utilizado fue la encuesta sobre consumo de drogas, factores y percepción de riesgo en estudiantes universitarios (CODEU) diseñado (...) por Beverido, Salas, De San Jorge, Pavón, Blázquez, Gogeascoechea y Cruz (2012), que consta de 73 preguntas. Este instrumento fue validado y obtuvo un alpha de Cronbach de 0.787. Los hallazgos muestran que entre los factores protectores se encuentran: adecuadas relaciones familiares y practicar un deporte, como factores de riesgo se identifican principalmente: la permisividad social y las construcciones de reconocimiento social presentes ante el consumo de sustancias legales. De las sustancias ilegales, la marihuana es la que se percibe como de menor riesgo frente a la cocaína, el bazuco, los inhalantes y la heroína. (shrink)

O estudo filosófico da ética sobre as interações entre os seres humanos e as tecnologias que empregam a Inteligência Artificial se tornou um tópico popular e importante como nunca antes. O estudo dos problemas que concernem essas interações justifica-se por conta das transformações tecnológicas pelas quais as sociedades humanas têm passado, e que ainda podem acarretar profundas mudanças legais, políticas e sociais. O artigo tem como objetivo principal identificar o papel da ética, enquanto disciplina filosófica, com relação ao recente e (...) promissor domínio de investigação sobre a ética da Inteligência Artificial. Após apresentar a posição do filósofo Peter Railton na ética aplicada à Inteligência Artificial, o artigo reconstitui as suas explicações na ética normativa e na metaética. Ao ilustrar as conexões entre a ética aplicada à Inteligência Artificial e a teoria moral, o artigo argumenta que o papel da ética na ética da Inteligência Artificial pode ser explicitado com o auxílio da engenharia conceitual. Essa abordagem mostra que conceitos como ‘agente’ e ‘interesse’, que são cruciais para a ética, como pode ser visto nas explicações de Railton, não devem ser pensados exclusivamente pela ética, ou mesmo somente pela filosofia, mas necessitam ser informados pelas ciências naturais e humanas. O artigo enfatiza a necessidade de realizar a tarefa filosófica de pensar a ética para além da ética, em um contexto interdisciplinar capaz de lidar com os complexos problemas práticos que impactam as sociedades humanas. (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)

Background 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. Methods 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. Results 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. Conclusion 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)

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)

ObjectivesTo describe reporting of informed consent in pragmatic trials, justifications for waivers of consent and reporting of alternative approaches to standard written consent. To identify factors associated with (1) not reporting and (2) not obtaining consent.MethodsSurvey of primary trial reports, published 2014–2019, identified using an electronic search filter for pragmatic trials implemented in MEDLINE, and registered in ClinicalTrials.gov.ResultsAmong 1988 trials, 132 (6.6%) did not include a statement about participant consent, 1691 (85.0%) reported consent had been obtained, 139 (7.0%) reported a (...) waiver and 26 (1.3%) reported consent for one aspect (eg, data collection) but a waiver for another (eg, intervention). Of the 165 trials reporting a waiver, 76 (46.1%) provided a justification. Few (53, 2.9%) explicitly reported use of alternative approaches to consent. In multivariable logistic regression analyses, lower journal impact factor (p=0.001) and cluster randomisation (p<0.0001) were significantly associated with not reporting on consent, while trial recency, cluster randomisation, higher-income country settings, health services research and explicit labelling as pragmatic were significantly associated with not obtaining consent (all p<0.0001).DiscussionNot obtaining consent seems to be increasing and is associated with the use of cluster randomisation and pragmatic aims, but neither cluster randomisation nor pragmatism are currently accepted justifications for waivers of consent. Rather than considering either standard written informed consent or waivers of consent, researchers and research ethics committees could consider alternative consent approaches that may facilitate the conduct of pragmatic trials while preserving patient autonomy and the public’s trust in research. (shrink)

Pragmatic comparative effectiveness randomized controlled trials evaluate the effectiveness of one interventions under real-world clinical conditions. The results of ceRCTs are often directly generalizable to everyday clinical practice, providing information critical to decision-making by patients, clinicians, and healthcare policymakers. The PRECIS-2 framework identifies nine domains that serve to score a trial on a continuum between very explanatory to very pragmatic. According to the framework, pragmatic trials may have one or more of the following features: there are fewer eligibility criteria for (...) participants, in an... (shrink)

The increasing use of cluster randomised trials in low-resource settings raises unique ethical issues. The Ottawa Statement on the Ethical Design and Conduct of Cluster Randomised Trials is the first international ethical guidance document specific to cluster trials, but it is unknown if it adequately addresses issues in low-resource settings. In this paper, we seek to identify any gaps in the Ottawa Statement relevant to cluster trials conducted in low-resource settings. Our method is to analyse a prototypical cluster trial conducted (...) in a low-resource setting with the Ottawa Statement; to identify ethical issues in the design or conduct of the trial not captured adequately and to make recommendations for issues needing attention in forthcoming revisions to the Ottawa Statement. Our analysis identified six ethical aspects of cluster randomised trials in low-resource settings that require further guidance. The forthcoming revision of the Ottawa Statement should provide additional guidance on these issues: streamlining research ethics committee review for collaborating investigators who are affiliated with other institutions; the classification of lay health workers who deliver study interventions as health providers or research participants; the dilemma experienced by investigators when national standards seem to prohibit waivers of consent; the timing of gatekeeper engagement, particularly when researchers face funding constraints; providing ancillary care in health services or implementation trials when a routine care control arm is known to fall below national standards and defining vulnerable participants needing protection in low-resource settings. (shrink)