This article addresses the United Nations’ Sustainable Development Goal 8 (Decent Work and Economic Growth) through the lens of pivot template subtitling, a practice deemed logistically efficient... Show moreThis article addresses the United Nations’ Sustainable Development Goal 8 (Decent Work and Economic Growth) through the lens of pivot template subtitling, a practice deemed logistically efficient by some and ethically suspicious by others. Drawing on (i) a critical review of 29 European codes of ethics promoted by professional translation associations and (ii) the answers to our online questionnaire on pivot subtitling (completed by 376 subtitlers based in Europe), we analyse the main concerns raised about pivot subtitling from the standpoint of access to decent work and economic growth in the AVT industry. Findings suggest that, from the professional subtitlers’ point of view, current practices in pivottemplate-centredworkflows may slow down the progress on SDG8, worsen working conditions and clash with professional codes of ethics. We end by suggesting ways to improve the use of indirect translation, so it does not hinder progress on SDG8 in the AVT industry. Show less
Transgender care, especially regarding the care of children and adolescents, is a relatively new field, in which developments are rapid, in which there is still relatively little empirical data... Show moreTransgender care, especially regarding the care of children and adolescents, is a relatively new field, in which developments are rapid, in which there is still relatively little empirical data available on long-term outcomes of providing or refraining from early medical treatment, and which is a subject of polarized debate. This thesis describes the themes that lead to controversies surrounding the use of early medical treatment for transgender children and adolescents. For each theme, it describes how the considerations, ideas and newly obtained scientific data, when applicable, have changed and developed over the recent years. It shows that care for transgender children and adolescents inherently involves ethical dilemmas, even if more clinical research data will be provided to underpin the evidence-base. Evidence alone will likely not be able to provide answers to all raised uncertainties concerning adolescent gender-affirming medical care. Ethical dilemmas will therefore probably remain part of this sensitive field of care. Besides illumination of some of these ethical dilemmas, this thesis gives suggestions for future studies and proposes ways of dealing with them in clinical practice. Show less
Boer, A. de; Proost, L. de; Vries, M. de; Hogeveen, M.; Verweij, E.J.T.; Geurtzen, R. 2023
ObjectiveA shared decision-making (SDM) approach is recommended for prenatal decisions at the limit of viability, with a guiding role for parental values. People born extremely premature experience... Show moreObjectiveA shared decision-making (SDM) approach is recommended for prenatal decisions at the limit of viability, with a guiding role for parental values. People born extremely premature experience the consequences of the decision made, but information about their perspectives on prenatal decisions is lacking. Therefore, this study aims to describe their perspectives on what is important in decision-making at the limit of viability.DesignSemi-structured focus group discussions were conducted, recorded and transcribed verbatim. The data were independently analysed by two researchers in Atlas.ti.ResultsFour focus groups were conducted in the Netherlands, with five to six participants each, born between 240/7 and 300/7 weeks gestation in the period between 1965 and 2002. Considering their personal life experiences and how their extremely premature birth affected their families, the participants reflected on decision-making at the limit of viability. Various considerations were discussed and summarised into the following themes: anticipated parental regret, the wish to look at the baby directly after birth, to give the infant a chance at survival, quality of life, long-term outcomes for the infant and the family, and religious or spiritual considerations.ConclusionsInsights into the perspectives of adults born extremely premature deepened our understanding of values considered in decision-making at the limit of viability. Results point out the need for a more individualised prediction of the prognosis and more extensive information on the lifelong impact of an extremely premature birth on both the infant and the family. This could help future parents and healthcare professionals in value-laden decision-making. Show less
This article examines court cases brought by clients against private health insurance companies and against Brazil’s public health system. When clients take private health insurers to court, they... Show moreThis article examines court cases brought by clients against private health insurance companies and against Brazil’s public health system. When clients take private health insurers to court, they successfully claim that the insurer violated their dignity, which entitles them to a moral damage payment. Similar cases against the state did not include moral damage claims. In relation to public healthcare, it is somehow not possible to equate dignity with economic value. One might conclude that the dignity of consumers in the market is worth more than that of citizens vis-à-vis the state. Instead, I argue for a more subtle approach by concentrating on the ethics of incommensurability. What legal and ethical considerations lead to such a fundamental incommensurability between personhood and economic value? How do the actors involved in court proceedings (claimants, prosecutors, judges, and insurers) perceive the differences between cases against insurance companies and against public health authorities? What can we make of the differences between the legal and everyday understandings of dignity and morality? Show less
In ancient Greek philosophy the concept of ataraxia (“absence of disturbance,” “freedom from anxiety,” “tranquility”) rapidly gained importance in the third century BCE during and after the... Show moreIn ancient Greek philosophy the concept of ataraxia (“absence of disturbance,” “freedom from anxiety,” “tranquility”) rapidly gained importance in the third century BCE during and after the conquests of Alexander the Great († 321 BCE). In this period most of the so-called Hellenistic philosophers—the Epicureans, Stoics, Academic skeptics, and Pyrrhonists—related tranquility to their concept of happiness as a fulfilled life. In this chapter I briefly discuss views of ataraxia in the work of Epicurus, the Stoics Seneca and Marcus Aurelius, and the Academic skeptic Cicero. I then give more space to the role of ataraxia in the Pyrrhonism defended by Sextus Empiricus because it presents us with an attitude to life that may appear particularly helpful to us in the twenty-first century. Show less
Background Women with a vulnerable health status, as determined by a low socioeconomic status and poor lifestyle behaviours, are at risk for adverse pregnancy outcomes. Offering tailored... Show moreBackground Women with a vulnerable health status, as determined by a low socioeconomic status and poor lifestyle behaviours, are at risk for adverse pregnancy outcomes. Offering tailored preconception lifestyle care can significantly help to improve pregnancy outcomes. We hypothesize that so-called 'nudges' can be a successful way of increasing the uptake of preconception lifestyle care. A nudge is a behavioural intervention that supports healthy choices by making them easier to choose. Nudging, however, raises many moral questions. Effectiveness and respect for autonomy are, among other criteria, required for a nudge to be morally permissible. In general, the target group knows best what they find permissible and what would motivate them to change their lifestyle. Therefore, this study - conducted in women with a vulnerable health status - aimed to identify their preferences towards a nudge, provided via a mobile application that aims to help them adopt healthy lifestyle behaviours by offering rewards. Methods We conducted semi-structured interviews with twelve women with a vulnerable health status. A framework approach was used to analyse the data. A thematic content analysis was conducted on five themes: (1) "Usefulness of an app as an integral information source", (2) "Permissibility and effects of offering rewards", (3) "Preferences regarding content", (4) "Preferences regarding type of rewards and system of allocation", and (5) "Barriers". Results Of the 12 participants, 11 deemed an app as integral information source concerning the preconception period useful. None of the participants objected to being nudged i.e., being rewarded for healthy behaviour. All participants stated that they would like the app to contain information on healthy nutrition and 8 participants wanted to know how to get pregnant quickly. Furthermore, participants stated that the freedom to choose the timing and content of the reward would increase the probability of successful behavioural change, and having to pay or contact a healthcare provider to access the app may prevent women using the app. Conclusions These insights into the preferences of women with a vulnerable health status towards nudging will inform the design of an effective app-based nudge. This may help to improve prepregnancy health as investment in health of current and future generations. Show less
Machine Translation (MT), the process by which a computer engine such as Google Translate or Bing automatically translates a text from one language into another without any human involvement, is... Show moreMachine Translation (MT), the process by which a computer engine such as Google Translate or Bing automatically translates a text from one language into another without any human involvement, is increasingly used in professional, institutional and everyday contexts for a wide range of purposes.While a growing number of studies has looked at professional translators and translation students, there is currently a lack of research on nontranslator users and uses in multilingual contexts.This paper presents a survey examining how, when and why students at Leiden University’s Faculty of Humanities use MT. A questionnaire was used to determine which MT engines students use and for what purposes, and gauge their awareness of issues concerning privacy, academic integrity and plagiarism. The findings reveal a widespread adoption of Google Translate and indicate that students use MT predominantly to look up single words, as an alternative to a dictionary. Many seemed sceptical about thevalue of MT for educational purposes, and many assumed that the use of MT is not permitted by lecturers for graded assignments, especially in courses focusing on language skills.The results demonstrate a clear need for more MT literacy. Students may not need practical training in how to use MT, but there is much room for improvement in terms of when and why they use it. Show less
The main argument of this chapter is that digital ethnography is neither new nor consisting of one single approach. It’s a set of methods that studies the use of digital technology both on- and... Show moreThe main argument of this chapter is that digital ethnography is neither new nor consisting of one single approach. It’s a set of methods that studies the use of digital technology both on- and offline, while at the same time using affordances of these very same digital technologies for studying the impact of the digital on cultural practice and social relations. The chapter addresses some of the definitional issues of an ethnography of the digital: How is it defined as a form of inquiry? And do we need a separate sub-discipline in order to study the digital ethnographically? Secondly, and in a next section, it refers to some of the foundational moments of digital ethnography, explaining how these have triggered new approaches and novel ways of understanding the digital. The fourth section particularly focuses on the methodological consequences of such shifts, looking at some of the classical methods and techniques used in doing digital ethnography whilst similarly exploring new frontiers where the ‘fireworks’ are expected to happen. After a brief section delving into some of the emergent ethical issues in this field, I will conclude this contribution with recommendations on how to teach (ourselves) digital ethnography. Show less
A significant proportion of the in-hospital antimicrobial consumption is used in the empiric setting, making empiric therapy an important target of stewardship interventions.Empiric antimicrobial... Show moreA significant proportion of the in-hospital antimicrobial consumption is used in the empiric setting, making empiric therapy an important target of stewardship interventions.Empiric antimicrobial therapy is the antimicrobial regimen that is started when the definite clinical diagnosis, causative agent and/or resistance pattern are yet unknown. Empiric therapy is accompanied by a varying level of uncertainty. In daily clinical practice, this uncertainty about the source, pathogen and susceptibility pattern are often managed by prescribing relatively broad-spectrum antimicrobial therapy. This has potential negative effects, such as toxicity and selective pressure resulting in antimicrobial resistance. Balancing the potential benefits and drawbacks of more broad-spectrum therapy is a substantial challenge, in particular when the level of uncertainty is high.This thesis aims to address the uncertainties most relevant in daily clinical practice in empiric antimicrobial therapy, to determine how they affect daily decision making, and to explore how this can be translated in antimicrobial policy making and antimicrobial stewardship. Show less
In this article I show the relevance of Emmanuel Levinas’ notion of primordial teaching for understanding why online teach- ing cannot adequately mimic face-to-face teaching. I will argue that the... Show moreIn this article I show the relevance of Emmanuel Levinas’ notion of primordial teaching for understanding why online teach- ing cannot adequately mimic face-to-face teaching. I will argue that the current Covid-19 pandemic shows us that being in the immediacy of the embodied presence of one’s students is intimately intertwined with being responsive to the needs of students, which highlights that teaching is not only the trans- mission of intellectual knowledge and skills but first and fore- most an ethical attunement to the suffering of the Other. Lev- inas argues that teaching is in its essence a relation between unique individuals; a uniqueness that originates in the indi- vidual’s unconditional responsibility to each and every other human being. This unconditional responsibility is for Levinas the non-mediated embodied sensitivity to the needs of the Other; an openness that precedes freedom and the conscious choice of a person. In this article I claim this embodied sensitiv- ity is jeopardised in online education, which makes it harder for the teacher to attune to the needs of every student. The risk we run is that the face of the Other remains ‘plastic’, which makes it more difficult for the teacher to attune to the specific needs of students. I will argue that online teaching should not only con- centrate on enabling the transmission of knowledge but should also invest in creating an environment of intimacy that enables responsiveness and genuine contact. Show less
This thesis is about ethics and neonatal resuscitation. More specifically, this thesis discussed ethical challenges that are raised after the decision to provide active care, when neonatal care... Show moreThis thesis is about ethics and neonatal resuscitation. More specifically, this thesis discussed ethical challenges that are raised after the decision to provide active care, when neonatal care providers strive to provide the best possible care. The provision of the best possible care during neonatal resuscitation can be assured throughconducting research and quality improvement activities. However, conducting these activities can be ethically challenging. By combining empirical research with ethicalreasoning, this thesis aimed to provide guidance for the ethical conduct of activities to study and improve neonatal resuscitation. Show less
Patient outcomes have been tremendously improved through neurosurgical innovation for which there are countless examples. However, how neurosurgical innovation occurs generally lacks structure.... Show morePatient outcomes have been tremendously improved through neurosurgical innovation for which there are countless examples. However, how neurosurgical innovation occurs generally lacks structure. This lack results in several ethical and practical problems related to patient safety. In this thesis, a new framework for neurosurgical innovation is proposed. This framework aims to provide an adequate valuation of structured and careful innovation. In recent neurosurgical innovations, related ethical dillema’s and excisiting frameworks for innovation were evaluated to come to this framework.Based on an extensive review of the literature, several recent neurosurgical innovations were not introduced in a structured fashion. This unstructured introduction holds potentially far-reaching consequences for informed consent, patient safety, and knowledge regarding long-term outcomes.Neurosurgical innovation holds several ethical dilemmas. These dilemmas range from the need to innovate in an emergency setting to the learning curve that every novel procedure brings. This thesis describes these dilemmas in detail and discusses potential solutions.Existing frameworks for innovation in medicine, such as the IDEAL Framework and learning health systems, have limited application to neurosurgery because of its unique patient population. Nevertheless, these frameworks form the inspiration for the beforementioned newly suggested framework for neurosurgical innovation. Show less
Dondorp, W.; Bolt, I.; Tibben, A.; Wert, G. de; Summeren, M. van 2021
In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie... Show moreIn debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined in concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child's future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the 'deliberative model' of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. Show less
Purpose: Enrolling traumatic brain injury (731) patients with an inability to provide informed consent in research is challenging. Alternatives to patient consent are not sufficiently embedded in... Show morePurpose: Enrolling traumatic brain injury (731) patients with an inability to provide informed consent in research is challenging. Alternatives to patient consent are not sufficiently embedded in European and national legislation, which allows procedural variation and bias. We aimed to quantify variations in informed consent policy and practice.Methods: Variation was explored in the CENTER-TBI study. Policies were reported by using a questionnaire and national legislation. Data on used informed consent procedures were available for 4498 patients from 57 centres across 17 European countries.Results: Variation in the use of informed consent procedures was found between and within EU member states. Proxy informed consent (N = 1377;64%) was the most frequently used type of consent in the ICU, followed by patient informed consent (N 426;20%) and deferred consent (N 334;16%). Deferred consent was only actively used in 15 centres (26%), although it was considered valid in 47 centres (82%).Conclusions: Alternatives to patient consent are essential for TBI research. While there seems to be concordance amongst national legislations, there is regional variability in institutional practices with respect to the use of different informed consent procedures. Variation could be caused by several reasons, including inconsistencies in clear legislation or knowledge of such legislation amongst researchers. (C) 2020 Published by Elsevier Inc. Show less
Background The COVID-19 pandemic confronts healthcare workers, including neurosurgeons, with difficult choices regarding which patients to treat. Methods In order to assist ethical triage, this... Show moreBackground The COVID-19 pandemic confronts healthcare workers, including neurosurgeons, with difficult choices regarding which patients to treat. Methods In order to assist ethical triage, this article gives an overview of the main considerations and ethical principles relevant when allocating resources in times of scarcity. Results We discuss a framework employing four principles: prioritizing the worst off, maximizing benefits, treating patients equally, and promoting instrumental value. We furthermore discuss the role of age and comorbidity in triage and highlight some principles that may seem intuitive but should not form a basis for triage. Conclusions This overview is presented on behalf of the European Association of Neurosurgical Societies and can be used as a toolkit for neurosurgeons faced with ethical dilemmas when triaging patients in times of scarcity. Show less
The distinction between potentiality and actuality in Aristotle has its origin in Platonic ethics. In his psychological and ethical works Aristotle’s notion of potentiality is embedded in a causal... Show moreThe distinction between potentiality and actuality in Aristotle has its origin in Platonic ethics. In his psychological and ethical works Aristotle’s notion of potentiality is embedded in a causal framework that is characteristic of life in general. A key theme is the distinction of various meanings of ‘to know’. In his early work the possession of knowledge is distinguished from its use. In De anima Aristotle adds the potentiality for acquiring knowledge as characteristic of the genus human being. He argues that the stages of actualization of knowledge are instances of a more comprehensive biological and ethical development. Life is the fulfillment of soul as formal, efficient and final cause, with the potentiality of body as material cause. The unity of body and soul is derived from the causal nexus of potentiality and actuality, like a power and the instrument in which it resides. In such cases potentiality is complex and depends on numerous conditions. Failure of full realization may occur when any of the necessary conditions of the development and realization of the fulfillment of human life are lacking, whether in the environment (e.g. climate), the body (illness, drunkenness), or the soul (natural virtue, firm character, attention). Show less
