This article considers how Christ’s mission is furthered by international theological education in the 21st century. The sociological and missiological roles of education in forming culture are briefly introduced, followed by a discussion of the benefits of international theological education in particular. An overview of international student migration is given before considering a contemporary example of international theological education. A case study is shared on the migration outcomes of foreign international graduates from a US seminary. Six life circumstances of these (...) international students are examined for correlation with their geographic choice of location upon graduation. Missiological implications from these results are discussed. Findings are relevant for ministry organizations, churches, and institutions. (shrink)

Machine learning algorithms pervade contemporary society. They are integral to social institutions, inform processes of governance, and animate the mundane technologies of daily life. Consistently, the outcomes of machine learning reflect, reproduce, and amplify structural inequalities. The field of fair machine learning has emerged in response, developing mathematical techniques that increase fairness based on anti-classification, classification parity, and calibration standards. In practice, these computational correctives invariably fall short, operating from an algorithmic idealism that does not, and cannot, address systemic, Intersectional (...) stratifications. Taking present fair machine learning methods as our point of departure, we suggest instead the notion and practice of algorithmic reparation. Rooted in theories of Intersectionality, reparative algorithms name, unmask, and undo allocative and representational harms as they materialize in sociotechnical form. We propose algorithmic reparation as a foundation for building, evaluating, adjusting, and when necessary, omitting and eradicating machine learning systems. (shrink)

The increasing use of Artificial Intelligence for making decisions in public affairs has sparked a lively debate on the benefits and potential harms of self-learning technologies, ranging from the hopes of fully informed and objectively taken decisions to fear for the destruction of mankind. To prevent the negative outcomes and to achieve accountable systems, many have argued that we need to open up the “black box” of AI decision-making and make it more transparent. Whereas this debate has primarily focused on (...) how transparency can secure high-quality, fair, and reliable decisions, far less attention has been devoted to the role of transparency when it comes to how the general public come to perceive AI decision-making as legitimate and worthy of acceptance. Since relying on coercion is not only normatively problematic but also costly and highly inefficient, perceived legitimacy is fundamental to the democratic system. This paper discusses how transparency in and about AI decision-making can affect the public’s perception of the legitimacy of decisions and decision-makers and produce a framework for analyzing these questions. We argue that a limited form of transparency that focuses on providing justifications for decisions has the potential to provide sufficient ground for perceived legitimacy without producing the harms full transparency would bring. (shrink)

Workplace‐collected blood spots deposited on filter paper were analysed with multiplexed affinity‐based protein assays and found to be suitable for proteomics analysis. The protein extension assay (PEA) was used to characterize 92 proteins using 1.2 mm punches in repeated samples collected from 20 workers. Overall, 97.8% of the samples and 91.3% of the analysed proteins passed quality control. Both within and between spot correlations using six replicates from the same individual were above 0.99, suggesting that comparable levels are obtained from (...) multiple punches from the same spot and from consecutive spots. Protein levels from dried blood and wet serum from the same individuals were compared and the majority of the analysed proteins were found to be significantly correlated. These results open up for simplified sample collection of blood in field conditions for proteomic analysis, but also highlight that not all proteins can be robustly measured from dried whole blood. (shrink)

Consent remains a crucial, yet challenging, cornerstone of clinical practice. The ethical, legal and professional understandings of this construct have evolved away from a doctor-centred act to a patient-centred process that encompasses the patient’s values, beliefs and goals. This alignment of consent with the philosophy of shared decision-making was affirmed in a recent high-profile Supreme Court ruling in England. The communication of information is central to this model of health care delivery but it can be difficult for doctors to gauge (...) the information needs of the individual patient. The aim of this paper is to describe ‘core information sets’ which are defined as a minimum set of consensus-derived information about a given procedure to be discussed with all patients. Importantly, they are intended to catalyse discussion of subjective importance to individuals. The model described in this paper applies health services research and Delphi consensus-building methods to an idea orginally proposed 30 years ago. The hypothesis is that, first, large amounts of potentially-important information are distilled down to discrete information domains. These are then, secondly, rated by key stakeholders in multiple iterations, so that core information of agreed importance can be defined. We argue that this scientific approach is key to identifying information important to all stakeholders, which may otherwise be communicated poorly or omitted from discussions entirely. Our methods apply systematic review, qualitative, survey and consensus-building techniques to define this ‘core information’. We propose that such information addresses the ‘reasonable patient’ standard for information disclosure but, more importantly, can serve as a spring board for high-value discussion of importance to the individual patient. The application of established research methods can define information of core importance to informed consent. Further work will establish how best to incorporate this model in routine practice. (shrink)

Emerging from the internationally recognised Theorising Normalcy and the Mundane conference series, the chapters in this book offer wide-ranging critiques of that most pervasive of ideas, 'normal'. In particular, they explore the precarious positions we are presented with and, more often than not, forced into by 'normal', and its operating system, 'normalcy' (Davis, 2010). They are written by activists, students, practitioners and academics and offer related but diverse approaches. Importantly, however, the chapters also ask, what if increasingly precarious encounters with, (...) and positions of, marginality and non-normativity offers us a chance (perhaps the chance) to critically explore the possibilities of 'imagining otherwise'? The book questions the privileged position of 'non-normativity'; in youth and unpacks the expectation of the 'normal' student in both higher and primary education. It uses the position of transable people to push the boundaries of 'disability', interrogates the psycho-emotional disablism of box-ticking bureaucracy and spotlights the 'urge to know' impairment. It draws on cross-movement and cross-disciplinary work around disability to explore topics as diverse as drug use, The Bible and relational autonomy. Finally, and perhaps most controversially, it explores the benefits of (re)instating 'normal'. By paying attention to the opportunities presented amongst the fissures of critique and defiance, this book offers new applications and perspectives for thinking through the most ordinary of ideas, 'normal'. (shrink)

By drawing on Jean-Luc Nancy’s philosophy of ontological relationality, this article explores what it means to be a ‘we’ in breast cancer. What are the characteristics—the extent and diversity—of couples’ relationally lived experiences of bodily changes in breast cancer? Through analyzing duo interviews with diagnosed women and their partners, four ways of sharing an embodied life are identified. (1) While ‘being different together’, partners have different, albeit connected kinds of experiences of breast cancer. (2) While ‘being there for you’, partners (...) take care of each other in mutually dependent ways. (3) While ‘being reconnected to you’, partners (re-)relate to each other through intimacy and sexuality. (4) While ‘being like you’, partners synchronize their embodied daily lives to one another, sometimes up to the point that the self cannot be distinguished from the other anymore. These ways reveal that being a ‘we’ involves complex affective, bodily encounters in which the many fault lines that both separate partners into individual selves and join them together as a unity are continuously reshaped and negotiated. Being a ‘we’ may be understood as something we have to do. Therefore, in being true to the legacy of Nancy, we argue at the end of this article for a sensible praxis of sharing a life and body, particularly in breast cancer. (shrink)

The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explored emerging ethical issues associated with the expanding use of digital data for research. The project involved consulting with researchers from a broad range of disciplinary fields. These discussions identified five key sets of issues and informed the development of guidelines (...) orientated to meet the needs of researchers and ethics committee members. We argue that establishing common approaches to assessing ethical risks of research involving digital data will promote consistency in the ethical standards for research, enable the smooth functioning of ethics committees, and sustain public confidence in research. We conclude with recommendations for the development of educational resources for ethics committees, data management guidelines and further public education. (shrink)

Some brain injured patients are left in a permanent vegetative state, i.e., they have irreversibly lost their capacity for consciousness but retained some autonomic physiological functions, such as breathing unaided. Having discussed the controversial nature of the permanent vegetative state as a diagnostic category, we turn to the question of the patients’ ontological status. Are the permanently vegetative alive, dead, or in some other state? We present empirical data from interviews with relatives of patients, and with experts, to support the (...) view that the ontological state of permanently vegetative patients is unclear: such patients are neither straightforwardly alive nor simply dead. Having defended this view from counter-arguments we turn to the practical question as to how these patients ought to be treated. Some relatives and experts believe it is right for patients to be shifted from their currently unclear ontological state to that of being straightforwardly dead, but many are concerned or even horrified by the only legally sanctioned method guaranteed to achieve this, namely withdrawal of clinically assisted nutrition and hydration. A way of addressing this distress would be to allow active euthanasia for these patients. This is highly controversial; but we argue that standard objections to allowing active euthanasia for this particular class of permanently vegetative patients are weakened by these patients’ distinctive ontological status. (shrink)

Corporate social responsibility has an impact on many areas of society, and it has recently been active in the digital space, a growing area of business activity. However, certain factors prevent it from firmly establishing itself in this area. One of these factors is the lack of user trust. Certain instruments have been created to address this issue, such as codes of conduct that seek to mitigate the causes of distrust by making significant improvements in the regulations and ethical standards (...) applicable to business transactions. These instruments are the product of industry self-regulation and complement rather than substitute for effective legal regulations. In light of some European Community directives, European legislators are addressing certain issues in this area, especially unfair business practices. (shrink)

Emotion processing is known to be impaired in psychopathy, but less is known about the cognitive mechanisms that drive this. Our study examined experiencing and suppression of emotion processing in psychopathy. Participants, violent offenders with varying levels of psychopathy, viewed positive and negative images under conditions of passive viewing, experiencing and suppressing. Higher scoring psychopathics were more cardiovascularly responsive when processing negative information than positive, possibly reflecting an anomalously rewarding aspect of processing normally unpleasant material. When required to experience emotional (...) response, by ‘getting into the feeling’ of the emotion conveyed by a negative image, higher factor 1 psychopathic individuals showed reduced responsiveness, suggesting that they were less able to do this. These data, together with the absence of corresponding differences in subjective self-report might be used to inform clinical strategies for normalising emotion processing in psychopathic offenders to improve treatment outcome, and reduce risk amongst this client group. (shrink)

In today’s world, Artificial Intelligence plays a central role in many decision-making processes. However, its use can lead to structural and epistemic injustices—especially in the context of healt...

Background Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child’s bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children is (...) worth exploring. Methods A systematic academic database and grey literature search strategy was conducted using CINAHL, Medline Psych Info, and Google Scholar. Keywords used included truth, children, nurse, disclosure, serious illness, and communication. A total of 17 publications of varying types were included in the final data set. Ethical Considerations As this was a review of the literature, there were no direct human participants. Empirical studies included in the review had received ethics approval. Results Of the 17 articles included in the review, only one directly reported on the experiences of nurses asked to withhold the truth from patients. Empirical studies were limited to HIV-positive children and children diagnosed with cancer and the dying child. Conclusion A paucity of literature exploring the experiences, attitudes, and beliefs of nurses with regard to truth-telling to seriously ill children is evident. Little consideration has been given to the role nurses play in communicating medical information to children in a hospital setting. The 17 articles included in the review focused on cancer, and HIV, diagnosis, and end-of-life care. Further research should be undertaken to explore the experiences and attitudes of nurses to clinical information sharing to children hospitalised with a wide range of serious illnesses and in diverse clinical scenarios. (shrink)

El objetivo de la investigación fue realizar un análisis de la capacidad de empatía en 178 adolescentes de 14 a 17 años que cursan el último ciclo de Educación Básica Regular. Se aplicó el diseño convergente. En la primera etapa, se aplicó una lista de cotejo, y en la segunda, una entrevista semiestructurada. El estudio de tipo transeccional sincrónico-descriptivo, permitió reportar que el adolescente, durante la pandemia, es empático, consciente de la posibilidad de infectarse, cree que su cuidado y autoprotección (...) impedirán que se infecte, sufre con el dolor de los otros a quienes los acompaña. (shrink)

Bloom's eloquent and comprehensive treatment of early word learning holds that social intention is foundational for language development. While we generally support his thesis, we call into question two of his proposals: (1) that attention to social information in the environment implies social intent, and (2) that infants are sensitive to social intent at the very beginnings of word learning.

Teachers, as role models, are crucial in promoting inclusion in society through their actions. Being perceived as fair by their students is linked to students’ feelings of belonging in school. In addition, their decisions of resource allocations also affect students’ academic success. Both aspects underpin the importance of teachers’ views on justice. This article aims to investigate what teachers consider to be just and how teacher characteristics and situational factors affect justice ratings of hypothetical student-teacher-interactions. In an experimental design, we (...) randomly varied the description of the interacting student in text vignettes regarding his/her special educational need. We also collected data on teachers’ attitudes toward inclusion and experiences with persons with disabilities. A sample of in-service teachers in Germany rated randomized versions of two text vignettes. To also consider the effect of professional status, a sample of pre-service teachers did the same. Linear mixed effect models point to a negative effect of the SEN on justice ratings, meaning situations in which the interacting student is described with a SEN were rated less just compared to the control condition. As the interacting student in the situations was treated worse than the rest, this was indicative for the application of the need principle. Teachers with more positive attitudes toward inclusion rated the vignettes as significantly less just. Professional status also had a negative effect on justice ratings, with in-service teachers rating the interactions significantly lower than the pre-service teachers. Our results suggest that the teachers applied the principle of need in their ratings. Implications for inclusive teaching practices and future research are discussed further. (shrink)

Participation in collective action is known to be driven by two appraisals of a social situation: Beliefs that the situation is unfair and beliefs that a group can change the situation. Anger has been repeatedly found to mediate the relationship between injustice appraisals and collective action. Recent work suggests that the emotion of being moved mediates the relationship between efficacy appraisals and collective action. Building on this prior work, the present research applies kama muta theory to further investigate the relationship (...) between efficacy appraisals and collective action. Kama muta is a positive emotion that is evoked by a sudden intensification of communal sharing, and largely overlaps with the English concept being moved. We investigated its relationship with collective action in both advantaged and disadvantaged racial groups in the context of the Black Lives Matter Movement in Spring of 2020. In one pilot study and one main study, we confirmed that anger toward the system of racial inequalities mediated between injustice and collective action intentions, and that kama muta toward the movement mediated between collective efficacy and collective action intentions. Both mediations were found for both Black and White participants. We also observed additional unpredicted paths from anger to kama muta and from efficacy to anger. Together, this provides evidence for the pivotal role of emotions in collective action intentions, but also points out that appraisals need to be better understood. (shrink)

Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries were collected as part of a European Research Project examining human and non-human biobanking. A total of 147 institutions concerned with biobanking of human samples and data were investigated by questionnaires and (...) interviews. Most institutions surveyed belong to the public or private non-profit-making sectors, which have a key role in biobanking. This activity is increasing in all countries because few samples are discarded and genetic research is proliferating. Collections vary in size, many being small and only a few very large. Their purpose is often research, or research and healthcare, mostly in the context of disease studies. A specific budget is very rarely allocated to biobanking and costs are not often evaluated. Samples are usually provided free of charge and gifts and exchanges are the common rule. Good practice guidelines are generally followed and quality controls are performed but quality procedures are not always clearly explained. Associated data are usually computerised. Biobankers generally favour centralisation of data rather than of samples. Legal and ethical harmonisation within Europe is considered likely to facilitate international collaboration. We propose a series of recommendations and suggestions arising from the EUROGENBANK project. (shrink)

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a (...) life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (shrink)

This study examines the impact of attitude toward piracy on intention to buy pirated CDs using Chinese samples. Attitude toward piracy is measured by a multi-item scale that has been shown to have a consistent factor structure with four distinct components, namely, social cost of piracy, anti-big business attitude, social benefit of dissemination, and ethical belief. Our findings reveal that social benefit of dissemination and anti-big business attitude have a positive relationship with intention to buy pirated CDs while social cost (...) of piracy and ethical belief have a negative relationship. Among these components, ethical belief tends to most strongly predict intention to buy pirated CDs. Demographic variables such as gender and age also help explain the respondents' intention to buy pirated CDs. In addition, those respondents with experience of buying pirated CDs would tend to be more likely to buy pirated CDs than those without such experience. The results are discussed with a view to helping copyright businesses to effectively suppress piracy, and directions for future research are suggested. (shrink)

This article discusses the key existential stakes of implementing biometrics in human lifeworlds. In this pursuit, we offer a problematization and reinvention of central values often taken for granted within the “ethical turn” of AI development and discourse, such as autonomy, agency, privacy and integrity, as we revisit basic questions about what it means to be human and embodied. Within a framework of existential media studies, we introduce an existential ethics of care—through a conversation between existentialism, virtue ethics, a feminist (...) ethics of care and post-humanist ethics—aiming to deepen and nuance our understanding of the human behind “human-centered” AI directives. The key argument is that biometrics implicates humans through unprecedented forms of objectification, through which the existential body—the relational, intimate and frail human being—is at risk. We interrogate these risks as they become visible at three sites where embodied humans are challenged by biometrics, and thus where the existential body is challenged by the biometric body. This occurs through reductionism (biometric passports nailing bodies to identities, removing human judgment and compromising agency at the AI border), enforced transparency (smart home assistants surveying human intimacies and invading intimate spaces in the bedroom) and the breaching of bodily integrity (chipping bodies to capture sensory data, challenging the very concept of bodily integrity through self-invasive biohacking). Our existential ethics of care is importantly not a solutionist list of principles or suggestions, but a manifesto for a way of thinking about the ethical challenges of living with biometrics in today’s world, by raising the right questions. We argue that a revitalized discussion of the basic existential stakes within human lived experience is needed and should serve as the foundation on which comprehensive frameworks can be built to address the complexities and prospects for ethical machines, responsible biometrics and AI. (shrink)

Palliative care seeks to improve the quality of life for patients suffering from the impact of life‐limiting illnesses. Palliative care encompasses but is more than end‐of‐life care, which is defined as care during the final hours/days/weeks of life. Although palliative care policies increasingly require all healthcare professionals to have at least basic or non‐specialist skills in palliative care, international evidence suggests there are difficulties in realising such policies. This study reports on an action research project aimed at developing respiratory nursing (...) practice to address the palliative care needs of patients with advanced chronic obstructive pulmonary disease (COPD). The findings suggest that interlevel dynamics at individual, team, interdepartmental and organisational levels are an important factor in the capacity of respiratory nurses to embed non‐specialist palliative care in their practice. At best, current efforts to embed palliative care in everyday practice may improve end‐of‐life care in the final hours/days/weeks of life. However, embedding palliative care in everyday practice requires a more fundamental shift in the organisation of care. (shrink)

In this article, we consider infants’ acquisition of foundational aspects of language and emotion through the lens of statistical learning. By taking a comparative developmental approach, we highlight ways in which the learning problems presented by input from these two rich communicative domains are both similar and different. Our goal is to encourage other scholars to consider multiple domains of human experience when developing theories in developmental cognitive science.

Bioethics, Volume 36, Issue 4, Page 434-444, May 2022.

In this article, we examine disability and eugenics discourses and the ways they function in spaces where vulnerable persons have been historically excluded by the state and blamed for their own “immiseration.” We ask how queer theories of repudiation, abjection, and vulnerability lend insight into the ways that people with intellectual disabilities are discursively located outside normative discourses of home, care, and quality of life, and whether these discourses shifted to serve this vulnerable population when historically the very places in (...) question repudiated them, infringed on their human rights, and questioned their sexuality. To address these questions, we focus on the recent and impending closures of Virginia’s Training Centers, residential institutions for persons with intellectual disabilities now scheduled for staggered closures before 2020. (shrink)

Advertising is a booming activity both in the physical realm and on the Internet. Online advertising is growing and is subject to legal standards, although some self-imposed ethical standards for the industry are needed. This has been called self-regulation. This article examines the important role that self-regulation can play in addressing advertising that uses degrading and discriminatory images of women that compromise their dignity. Sexist advertising is a reification of women—stereotypes and sexist social models—that do not convey a realistic image (...) of a woman’s abilities and potential. This article analyzes specific decisions on the subject issued by the Jury of the Spanish Association for the Self-Regulation of Commercial Communication. The Jury’s decisions are based on a code of ethics. The technical expertise and impartiality manifested in its decisions have produced a high degree of credibility and confidence in the organization. (shrink)

El duelo es un proceso psicológico duro de sobrellevar ante la muerte por la aparición del Covid-19 en el Perú. Cuando las personas infectadas morían a consecuencia de la infección, eran incineradas por cuenta del hospital, y a los familiares se les entregaba una caja pequeña en la que se les decía que estaban las cenizas de su difunto. Las entrevistas realizadas a niños de 11 años de edad, padres de familia y psicólogos de hospitales; revelaron cuadros de ansiedad o (...) angustia, debido al temor generalizado. Los factores de protección social y escolar fueron poco sostenibles para sobrellevar la pena. (shrink)

Clinical decision-making in old-age care is a complex and ethically sensitive process. Despite its importance, research addressing the challenges of clinical decision-making in old-age care within this cultural context is limited. This study aimed to explore the challenges and ethical concerns in clinical decision-making in old-age care in Ethiopia. This qualitative study employed an inductive approach with data collected via semi-structured interviews with 20 older patients and 26 health professionals recruited from healthcare facilities in Ethiopia. Data were analysed using reflexive (...) thematic analysis. Our analysis identified three key themes. First, participants highlighted perceptions that older patients’ religious beliefs interfere with the clinical decisions both older patients and health professionals make. Second, older patients often receive limited information from health professionals about their diagnosis and treatment. Third, families of older patients appear to strongly influence clinical decisions made by older patients or health professionals. This research enhances the understanding of clinical decision-making in old-age care within Ethiopia, a context where such research is scarce. As a result, this study contributes towards advancing the deliberation of ethical dilemmas that health professionals who work with older patients in Ethiopia might face. A key implication of the study is that there is a need for more ethics and cultural competence training for health professionals working with older patients in Ethiopia. (shrink)

In recent years, facial difference is increasingly on the public and academic agenda. This is evidenced by the growing public presence of individuals with an atypical face, and the simultaneous emergence of research investigating the issues associated with facial variance. The scholarship on facial difference approaches this topic either through a medical and rehabilitation perspective, or a psycho-social one. However, having a different face also encompasses an embodied dimension. In this paper, we explore this embodied dimension by interpreting the stories (...) of individuals with facial limb absence against the background of phenomenological theories of the body, illness and disability. Our findings suggest that the atypical face disrupts these individuals’ engagement with everyday projects when it gives rise to disruptive perceptions, sensations, and observations. The face then ceases to be the absent background to perception, and becomes foregrounded in awareness. The disruptions evoked by facial difference call for adjustments: as they come to terms with their altered face, the participants in our study gradually develop various new bodily habits that re-establish their face’s absence, or relate to its disruptive presence. It is through these emergent habits that facial difference comes to be embodied. By analyzing the everyday experiences of individuals with facial limb absence, this article provides a much-needed exploration of the embodied aspects of facial difference. It also exemplifies how a phenomenological account of illness and disability can do justice both to the impairments and appearance issues associated with atypical embodiment. (shrink)

This paper is a study of the decisions that researchers take during the execution of a research plan: their researcher discretion. Flexible research methods are generally seen as undesirable, and many methodologists urge to eliminate these so-called ‘researcher degrees of freedom’ from the research practice. However, what this looks like in practice is unclear. Based on twelve months of ethnographic fieldwork in two end-of-life research groups in which we observed research practice, conducted interviews, and collected documents, we explore when researchers (...) are required to make decisions, and what these decisions entail.An abductive analysis of this data showed that researchers are constantly required to further interpret research plans, indicating that there is no clear division between planning and plan execution. This discretion emerges either when a research protocol is underdetermined or overdetermined, in which case they need to operationalise or adapt the plans respectively. In addition, we found that many of these instances of researcher discretion are exercised implicitly. Within the research groups it was occasionally not clear which topic merited an active decision, or which action could retroactively be categorised as one.Our ethnographic study of research practice suggests that researcher discretion is an integral and inevitable aspect of research practice, as many elements of a research protocol will either need to be further operationalised or adapted during its execution. Moreover, it may be difficult for researchers to identify their own discretion, limiting their effectivity in transparency. (shrink)

BackgroundIn most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of ‘good death’ to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we (...) conducted a scoping review and thematic synthesis.MethodsTo capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature.ResultsInitial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as ‘natural’ and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making, its influence on policy and decision-making, and some caveats that arise from the studies.ConclusionsTogether these three themes indicate a number of directions for future research, which are likely to be applicable to other conditions that result in reduced agency. Above all, this review emphasises the need for new concepts and fresh approaches to end of life decision-making that address the needs of the growing population of frail older people, people with dementia and those with severe traumatic brain injury. (shrink)

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested illness. This paper analyzes the discursive production of knowledge about, and recognition of ME/CFS. By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position. In focusing on the case of the Dutch newspaper reporting about ME/CFS, this paper shows that the debate about this condition predominantly revolves around the ways (...) in which people who make truth claims are represented. In being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent, people with ME/CFS are constructed as non-/credible. In the debate about what causes ME/CFS, by contrast, the production of non-/credible knowledge focuses more on the content of epistemic positions. Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established. (shrink)