In psychotherapy research, treatment efficacy is commonly studied by means of self-report questionnaires to gain quantitative data on symptom development. The data serve as input for statistical analyses up to the level of evidence-based treatment. We analyzed how a patient in a psychotherapy study experienced the translation of her story into quantitative data by combining a phenomenological qualitative analysis of her therapeutic narrative and a visual analysis of her extensively annotated paper-andpencil questionnaires. Our findings provide a practical empirical illustration of (...) the nature and impact of known validity issues. Beyond, we found the act of questionnaire administration affected the primary complaint such that it became performative toward the symptoms under study. We discuss the epistemic consequences for the validity of data, and we argue that valid data collection requires qualitative scrutiny of meaning within data and a concept of validity that allows for consideration of performativity of data collection. (shrink)

Research involving children or other incompetent subjects who are deemed unable to provide informed consent is complex, particularly in the case of research that does not directly benefit the research subjects themselves. The Helsinki Declaration, the World Medical Association's landmark document for research ethics, therefore states that incompetent research subjects must not be included in such research unless it entails only minimal risk and minimal burden. In this paper, we argue that now that research in these groups is expected to (...) expand, this undifferentiated minimal risk and burden requirement does not suffice any more. In the upcoming revision of the Declaration, the paragraph at stake should be refined in such a way that it is not unnecessarily restrictive or more permissive than can be ethically justified. Our first recommendation is to stimulate research ethics committees to identify more accurately those risks and burdens that the research subjects must undergo solely for research purposes by distinguishing between two types of study procedures instead of between two types of studies. Our second recommendation is to allow for exceptions to the minimal risk and burden requirement in cases of exceptionally valuable studies that involve subjects who can give their assent to participate in the study and that involve at most a minor increase over minimal risk and/or burden. (shrink)

Background Changes in health needs led to an increase in virtual care practices such as telemedicine. Nursing plays an essential role in this practice as it is the key to accessing the healthcare system. It is important that this branch of nursing is developed considering all the ethical aspects of nursing care, and not just the legal concepts of the practice. However, this question has not been widely explored in the literature and it is of crucial relevance in the new (...) concept of care. Objective The purpose of this scoping review is to identify the ethical aspects of the development of telemedicine from a nursing practice perspective. Methods A scoping review of the literature based on Arksey and O’Malley’s framework. The search was conducted in Scopus, PubMed/MEDLINE and CINAHL databases, from 2012 to 2022. A total of 1322 articles were retrieved, of which 12 met the inclusion criteria. Ethical considerations The research was conducted in accordance with the best scientific practices. Findings The most relevant aspects were the safety of the patient, the benefits for the user and the digital competence of the professionals. Informed consent and patient’s willingness to use new technologies were relevant to the practice, as was person-centered care and how telemedicine can influence the quality of the therapeutic relationship. Another relevant issue was the concern about professional competence for optimal outcomes. Conclusion It is necessary to further explore and develop the ethical aspects of the new practices, disassociating them from the legal aspects only. Professionals demand more training providing them with more competence and confidence. (shrink)

The modern critical approach to things hagiographical still wavers when it comes to taking leave of twelve lines of iambic invective, branded with wonderful delicacy of touch on the saintly foreheads of two Palestinian brothers, Theodore and Theophanes, the so-called “Graptoi”. Barry Baldwin, noting that C.A. Trypanis, unlike the great B. Bury and others, was inclined to disbelieve the story, could not help expressing the hope that it was true (An Anthology of Byzantine Poetry, Amsterdam 1985, pp. 142–3). It is (...) of course only one of the many stories concocted by iconodule propaganda. The central question has to be formulated in more general terms: how is history made? History here primarily in the sense of the construction of the past by the Byzantines themselves, was embodied in historical narratives moving between hagiography and historiography. Trying to lay bare the basis and elements of such constructs will always remain a major task of critical historical scholarship. (shrink)

During the past few years, the IRBIT domain has emerged as an important add‐on of S‐adenosyl‐L‐homocystein hydrolase (AHCY), thereby creating the new family of AHCY‐like proteins. In this review, we discuss the currently available data on this new family of proteins. We describe the IRBIT domain as a unique part of these proteins and give an overview of its regulation via (de)phosphorylation and proteolysis. The second part of this review is focused on the potential functions of the AHCY‐like proteins. We (...) propose that the IRBIT domain serves as an anchor for targeting AHCY‐like proteins towards cytoplasmic targets. This leads to regulation of (i) intracellular Ca2+ via the inositol 1,4,5‐trisphosphate receptor (IP3R), (ii) intracellular pH via the Na+/HCO3− cotransporters (NBCs); whereas inactivation of the IRBIT domain induces (iii) nuclear translocation and regulation of AHCY activity. Dysfunction of AHCY‐like proteins will disturb these three important functions, with various biological implications. BioEssays 30:642–652, 2008. © 2008 Wiley Periodicals, Inc. (shrink)

Democratic societies expect their armed forces to act in a morally responsible way, which seems a fair expectation given the fact that they entrust their armed forces with the monopoly of violence. However, this is not as straightforward and unambiguous as it sounds. Present-day military practices show that political assignments, social and cultural contexts, innovative technologies and organisational structures, present military personnel with questions and dilemma’s that can have far-reaching consequences for all involved – not in the last place for (...) the soldiers themselves. A thorough training and education, in which critical thinking is developed and stimulated, seems therefore a necessary condition for morally responsible behaviour. This book aims to contribute to this form of ‘reflective practitioning’ in military practice. (shrink)

On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the Regional Review Committees (...) for Termination of Life on Request and Euthanasia and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia. (shrink)

ObjectiveLoss of control eating has been directly related to the core aspects of the psychopathology of eating disorders and to different dimensions of emotion and behavior regulation and self-criticism. This study investigates a model representing the interplay between these dimensions to understand LOC eating among a nonclinical sample.MethodsA total of 341 participants, recruited in a college campus, completed a set of self-report measures assessing LOC eating, weight suppression, psychopathology of eating disorders, depression, negative urgency, emotion regulation difficulties, and self-criticism. Path (...) analysis modeling tested a hypothesized model with 3 paths for LOC eating as follows: psychopathology of eating disorders; emotion and behavior regulation; and interplay between these paths.ResultsWe found goodness-of-fit indexes to our data: χ2 = 17.11, df = 10, Comparative Fit Index = 0.99, Tucker-Lewis index = 0.98, Root Mean Square Error Approximation = 0.045, Standardized Root Mean Square Residual = 0.041, suggesting that: participants with higher weight suppression showed higher degrees of the psychopathology of eating disorders, which was linked to higher levels of LOC eating; self-criticism was a mediator between emotion regulation and depression/negative urgency; self-criticism was a mediator between emotion regulation and disorder eating, which was significantly associated with LOC eating via increased negative urgency.ConclusionOur model shows that LOC eating occurs for individuals with the psychopathology of higher eating disorders who experience depressive symptoms and act rashly under distress for their inability to cope adequately with negative feelings of self-devaluation. These findings point to the importance of negative self-evaluations and feelings of inadequacy or worthlessness to understand LOC eating among college students. (shrink)

Esta entrevista tem como escopo registrar algumas das experiências e saberes de uma das maiores sociólogas do Brasil, Mary Garcia Castro. Graduada em Ciências Sociais pela Universidade Federal da Bahia, mestre em Sociologia da Cultura pela mesma instituição. Também possui mestrado em Planejamento Urbano e Regional pela Universidade Federal do Rio de Janeiro e doutorado em Sociologia pela University of Florida. Ela tem um vasto currículo marcado por atuações e publicações nacionais e internacionais. Mary Castro foi professora e pesquisadora da (...) UFBA, além de pesquisadora associada da Universidade Estadual de Campinas e da Universidade Católica de Salvador. (shrink)

From past research it is well known that social exclusion has detrimental consequences for mental health. To deal with these adverse effects, socially excluded individuals frequently turn to other humans for emotional support. While chatbots can elicit social and emotional responses on the part of the human interlocutor, their effectiveness in the context of social exclusion has not been investigated. In the present study, we examined whether an empathic chatbot can serve as a buffer against the adverse effects of social (...) ostracism. After experiencing exclusion on social media, participants were randomly assigned to either talk with an empathetic chatbot about it (e.g., “I'm sorry that this happened to you”) or a control condition where their responses were merely acknowledged (e.g., “Thank you for your feedback”). Replicating previous research, results revealed that experiences of social exclusion dampened the mood of participants. Interacting with an empathetic chatbot, however, appeared to have a mitigating impact. In particular, participants in the chatbot intervention condition reported higher mood than those in the control condition. Theoretical, methodological, and practical implications, as well as directions for future research are discussed. (shrink)

The aim of the study is to encourage a critical debate on the use of normality in the medical literature on DSD or intersex. For this purpose, a scoping review was conducted to identify and map the various ways in which “normal” is used in the medical literature on DSD between 2016 and 2020. We identified 75 studies, many of which were case studies highlighting rare cases of DSD, others, mainly retrospective observational studies, focused on improving diagnosis or treatment. The (...) most common use of the adjective normal was in association with phenotypic sex. Overall, appearance was the most commonly cited criteria to evaluate the normality of sex organs. More than 1/3 of the studies included also medical photographs of sex organs. This persistent use of normality in reference to phenotypic sex is worrisome given the long-term medicalization of intersex bodies in the name of a “normal” appearance or leading a “normal” life. Healthcare professionals should be more careful about the ethical implications of using photographs in publications given that many intersex persons describe their experience with medical photography as dehumanizing. (shrink)

The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children’s participation in non-beneficial clinical research. Building on Wendler’s ‘contribution to a valuable project’ justification, but going beyond a risk/benefit analysis, it articulates a pro-research argument which appeals to a phenomenological view on the body and vulnerability. It (...) is claimed that children’s bodies are not mere physical objects, but body-subjects due to which children, as persons, can contribute to research that may hold no direct clinical benefit to them even before they can give informed consent. (shrink)

The aim of the study is to rethink the ethics of advanced motherhood. In the literature, delayed childbearing is usually discussed in the context of reproductive justice, and in relationship to ethical issues associated with the use and risk of assisted reproductive technologies. We aim to go beyond these more “traditional” ways in which reproductive ethics is framed by revisiting ethics itself through the lens of the figure of the so-called “older” mother. For this purpose, we start by exploring some (...) of the deep seated socio-cultural discourses in the context of procreation: ageism, ableism and the widespread bias towards geneticism and pronatalism. Afterwards, we provide a critical overview of the key arguments against or in support of advanced motherhood. We then briefly discuss how entrenchment by both sides has produced an impasse in the debate on the ethics of advanced motherhood and proceed by arguing that it is fundamental to bring about a change in this narrative. For this purpose, we will revisit the feminist usage of the concept of vulnerability which will allow us both to criticize culturally prescribed norms about motherhood and to address the painful reality of age-related fertility decline. In the last section, we argue that instead of defining “older” motherhood as an ethical problem, we should problematize the fact that female reproductive ageing is an understudied and ill-sourced topic. We believe that allocating resources to research to better understand female reproductive ageing is not only ethically permissible, but might even be ethically desirable. (shrink)

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...) and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that “creates” that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making. (shrink)

Biobanks are important resources for improving public health and individual care. Some legal frameworks can be more or less conducive to advancing the potential benefits of biobanks. The purpose of this article is to assess biobanking legislation and practices in Spain to determine how well they fare in such a regard. We focus here on some of the primary ethical values that ground relevant legislation and that we believe are consistent with promoting biobanking benefits: the value of scientific research; efficient (...) use of scarce resources; and respect for the dignity of donors. We argue that although Spanish regulations advance these values in important ways, they also have provisions that undermine them and thus risk limiting the potential benefits of biobanks. We offer some suggestions for improvement. (shrink)

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity (...) is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties. (shrink)

BackgroundNormality is both a descriptive and a normative concept. Undoubtedly, the normal often operates normatively as an exclusionary tool of cultural authority. While it has prominently found its way into the field of medicine, it remains rather unclear in what sense it is used. Thus, our study sought to elucidate people’s understanding of normality in medicine and to identify concepts that are linked to it.MethodsUsing convenient sampling, we carried out a cross-sectional survey. Since the survey was advertised through social media, (...) we employed an online survey. We performed descriptive and inferential analyses. Predictors were chosen in a theory-driven manner.ResultsIn total, 323 persons from 21 countries completed the survey. Analysis revealed that the overall acceptance of normality in medicine was associated with notions of injustice, authority, discrimination, and with having a medical profession. More precisely, for the field of mental health, injustice insensitivity, genderism and transphobia, and authority were positively associated with a person’s acceptance of normality; and, for the field of physical health, injustice insensitivity and having a medical profession were positively associated with a person’s acceptance of normality. Finally, participants’ acceptance of the use of normality in the area of mental health was lower than in the area of physical health.ConclusionsWhat is considered normal has implications for clinical practice, both at an individual and at a policy-level. Acknowledging its normalistic condition, the discipline of medicine has to confront itself with its own contribution to the augmentation of social inequalities through the excessive reliance on the concept of normality. Research that centers the lived experiences of those who are being systematically marginalized because they are deemed abnormal is needed. By empirically elucidating the conceptual relationships between normality in medicine and other variables, we provide points of leverage to deprive normality of its normative power. For medicine, this is needed to first do no harm. (shrink)

This study provides insight into the experiences of young adults born with variations of sex characteristics to identify aspects of care and social support that need improvement. Semi-structured interviews with intersex youths in Switzerland were analyzed using interpretative, phenomenological analysis. Young adults desire timely, patient-centered information about their diagnoses. Peer support is key to delivering high-quality care but rarely systematically implemented. Intersex youth often face misrepresentation, stigma, and discrimination in medical settings and in society. Increased visibility alone cannot tackle these (...) issues, but a feminist curiosity of care will enable health providers and society to overcome preconceptions of body normativity. (shrink)

This article aims to make a case for the need to sensitize the medical community on the importance of providing sexual health information in the care of intersex adolescents and young adults for whom sexuality and intimacy are sensitive subjects—and to go beyond a narrow focus on surgical outcomes. For this purpose, this article gives voice to the lived experience of “Emma,” a young adult who identifies as intersex. Setting up strong collaboration between medical teams and intersex support groups might (...) be the best way forward to provide high-quality care to youth born with variations of sex characteristics. (shrink)

‘Religion and corporeality’. At first sight, the coordinating conjunction «and» sounds rather odd here because in the vision of many people spirituality and materiality necessarily exclude each other. Still, many scholars have offered abundant evidence that Christianity is a religion of embodiment. Yet, as will become clear from the works of the theologians Erik Peterson and André Guindon, the turn toward the body within Christianity is primarily a turn toward a clothed body. This may explain why the Italian philosopher Giorgio (...) Agamben has argued that our culture, which is heavily influenced by Christian theology, is characterized by the impossibility of nakedness. In his view, we should try to think a possible nakedness of man by liberating it, piece by piece, from the theological fabric which is wrapped around it. The question that I want to raise here is whether such a naked nudity is really a human option. Drawing on Pope John Paul II’s Theology of the Body and introducing the notion of corporeal vulnerability, I will argue that it is not. (shrink)

Viola and Ben, two pediatric oncology patients, need to undergo chemotherapy that might decrease their fertility. Both of them want to participate in the decisions related to their cancer treatment and fertility preservation. Should they be involved, and if so when and how?In many jurisdictions, children are not entitled to provide legally valid consent for medical decisions.1 As a result, others, usually parents, take on the role of surrogate decision-makers who act in their best interest. Still, it is important to (...) keep in mind that the age limit for competence set by legislation does not necessarily coincide with children’s clinical decision-making capacity: some children may be able to make certain health-care... (shrink)

Open science (OS) is considered the new paradigm for science and knowledge dissemination. OS fosters cooperative work and new ways of distributing knowledge by promoting effective data sharing (as early and broadly as possible) and a dynamic exchange of research outcomes, not only publications. On the other hand, intellectual property (IP) legislation seeks to balance the moral and economic rights of creators and inventors with the wider interests and needs of society. Managing knowledge outcomes in a new open research and (...) innovation ecosystem is challenging and should become part of the EU’s IP strategy, underpinning EU policies with the new open science–open innovation paradigm. (shrink)

This study focuses on the application of multicriteria decision-making techniques, specifically the analytic hierarchy process (AHP), to identify corporate socialresponsibility information which both companies and stakeholders consider relevant and material. This work explains how the AHP methodology was applied in the selection of material indicators in corporate social responsibility reporting, the interpretation of these indicators and their relative importance. The results of this study are summarized in 60 indicators distributed in four areas: environment, economy, corporate governance and social. As this (...) last area contains the greatest number of indicators, it was divided into four sub-areas (human resources, human rights, product responsibility and society). (shrink)