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)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making in pediatrics, (...) to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Background: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. Methods: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding. Results: Parenting styles, the child's personality, and maturity are factors that have a great impact upon the (...) inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent–child and physician–patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion. Conclusions: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities. (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)

In many European countries, the explicit discussion of race as a biological phenomenon has long been avoided. This has not meant that race has become obsolete or irrelevant all together. Rather, it is a slippery object that keeps shifting and changing. To understand its slippery nature, we suggest that race in Europe is best viewed as an absent presence, something that oscillates between reality and nonreality, which appears on the surface and then hides underground. In this special issue, we explore (...) how race has been configured in different practices and how race-based identities and technologies are entwined in various European settings. (shrink)

Territorial borders just like other boundaries are involved in a politics of belonging, a politics of “us” and “them”. Border management regimes are thus part of processes of othering. In this article, we use the management of borders and populations in Europe as an empirical example to make a theoretical claim about race. We introduce the notion of the phenotypic other to argue that race is a topological object, an object that is spatially and temporally folded in distributed technologies of (...) governance. To elaborate on these notions, we first examine a number of border management technologies through which both race and Europe are brought into being. More specifically we focus on how various such technologies aimed at monitoring the movement of individuals together with the management of populations have come to play crucial roles in Europe. Different border management regimes, we argue, do not only enact different versions of Europe but also different phenotypic others. We then shift the focus from border regimes to internal practices of governance, examining forensic DNA databanks to unravel articulations of race in the traffic between databases and societies. (shrink)

Prosocial behavior is critical for the natural development of an individual as well as for promoting social relationships. Although this complex behavior results from gratuitous acts occurring between an agent and a recipient and a wealth of literature on prosocial behavior has investigated these actions, little is known about the effects on the recipient and the neurobiology underlying them. In this study, we used functional magnetic resonance imaging to identify neural correlates of receiving prosocial behavior in the context of real-world (...) experiences, with different types of action provided by the agent, including practical help and effort appreciation. Practical help was associated with increased activation in a network of regions spanning across bilateral superior temporal sulcus, temporoparietal junction, temporal pole, and medial prefrontal cortex. Effort appreciation was associated with activation and increased task-modulated connectivity of the occipital cortex. Prosocial-dependent brain responses were associated with positive affect. Our results support the role of the theory of mind network and the visual cortices in mediating the positive effects of receiving gratuitous help. Moreover, they indicate that specific types of prosocial behavior are mediated by distinct brain networks, which further demonstrates the uniqueness of the psychological processes underlying prosocial actions. (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)

The environment can have a long‐lasting influence on an individual's physiology and behavior. While some environmental conditions can be beneficial and result in adaptive responses, others can lead to pathological behaviors. Many studies have demonstrated that changes induced by the environment are expressed not only by the individuals directly exposed, but also by the offspring sometimes across multiple generations. Epigenetic alterations have been proposed as underlying mechanisms for such transmissible effects. Here, we review the most relevant literature on these changes (...) and the developmental stages they affect the most. We discuss current evidence for transgenerational effects of prenatal and postnatal factors on bodily functions and behavioral responses, and the potential epigenetic mechanisms involved. We also discuss the need for a careful evaluation of the evolutionary importance with respect to health and disease, and possible directions for future research in the field. (shrink)

The hippocampal formation is known for its importance in conscious, declarative memory. Here, we report neuroimaging evidence in humans for an additional role of the hippocampal formation in nonconscious memory. We maskedly presented combinations of faces and written professions such that subjects were not aware of them. Nevertheless, the masked presentations activated many of the brain regions that unmasked presentations of these stimuli did. To induce a nonconscious retrieval of the faces and face-associated occupational information, subjects were instructed to view (...) the previously masked faces and to guess the professional category of each person—academic, artist, and workman. Guessing the professional category of previously masked versus new faces activated the left and right hippocampal formation and right perirhinal cortex as well as bilateral fusiform areas and fronto-temporal areas known to mediate the retrieval of semantic information. These activations within the semantic processing system suggest that conceptual knowledge acquired during masking was nonconsciously retrieved. Our data provide clues to an analogous role of the hippocampus in conscious and nonconscious memory. (shrink)

During gestation, fetomaternal exchange occurs in the villous tree (labyrinth) of the placenta. Development of this structure depends on tightly coordinated cellular processes of branching morphogenesis and differentiation of specialized trophoblast cells. The basal chorionic trophoblast (BCT) cell layer that localizes next to the chorioallantoic interface is of critical importance for labyrinth morphogenesis in rodents. Gcm1‐positive cell clusters within this layer initiate branching morphogenesis thereby guiding allantoic fetal blood vessels towards maternal blood sinuses. Later these cells differentiate and contribute to (...) the syncytiotrophoblast of the fetomaternal barrier. Additional cells within the BCT layer sustain continued morphogenesis, possibly through a repopulating progenitor population. Several mouse mutants highlight the importance of a structurally intact BCT epithelium, and a growing number of studies addresses its patterning and epithelial architecture. Here, we review and discuss emerging concepts in labyrinth development focussing on the biology of the BCT cell layer. (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)

It has become increasingly difficult for individuals to exercise meaningful control over the personal data they disclose to companies or to understand and track the ways in which that data is exchanged and used. These developments have led to an emerging consensus that existing privacy and data protection laws offer individuals insufficient protections against harms stemming from current data practices. However, an effective and ethically justified way forward remains elusive. To inform policy in this area, we propose the Ethical Data (...) Practices framework. The framework outlines six principles relevant to the collection and use of personal data—minimizing harm, fairly distributing benefits and burdens, respecting autonomy, transparency, accountability, and inclusion—and translates these principles into action-guiding practical imperatives for companies that process personal data. In addition to informing policy, the practical imperatives can be voluntarily adopted by companies to promote ethical data practices. (shrink)

Recently developed super‐resolution microscopy techniques are changing our understanding of lipid rafts and membrane organisation in general. The lipid raft hypothesis postulates that cholesterol can drive the formation of ordered domains within the plasma membrane of cells, which may serve as platforms for cell signalling and membrane trafficking. There is now a wealth of evidence for these domains. However, their study has hitherto been hampered by the resolution limit of optical microscopy, making the definition of their properties problematic and contentious. (...) New microscopy techniques circumvent the resolution limit and, for the first time, allow the fluorescence imaging of structures on length scales below 200 nm. This review describes such techniques, particularly as applied to the study of membrane organisation, synthesising newly emerging facets of lipid raft biology into a state‐of‐the art model.Editor's suggested further reading in BioEssays: Super‐resolution imaging prompts re‐thinking of cell biology mechanisms Abstract and Quantitative analysis of photoactivated localization microscopy (PALM) datasets using pair‐correlation analysis Abstract. (shrink)

Social scientists have paid insufficient attention to the role of law in constituting the economic institutions of capitalism. Part of this neglect emanates from inadequate conceptions of the nature of law itself. Spontaneous conceptions of law and property rights that downplay the role of the state are criticized here, because they typically assume relatively small numbers of agents and underplay the complexity and uncertainty in developed capitalist systems. In developed capitalist economies, law is sustained through interaction between private agents, courts (...) and the legislative apparatus. Law is also a key institution for overcoming contracting uncertainties. It is furthermore a part of the power structure of society, and a major means by which power is exercised. This argument is illustrated by considering institutions such as property and the firm. Complex systems of law have played a crucial role in capitalist development and are also vital for developing economies. (shrink)

We present a conceptual framework on the experience of time and provide a coherent basis on which to base further inquiries into qualitative approaches concerning time experience. We propose two Time-Layers and two Time-Formats forming four Time-Domains. Micro-Flow and Micro-Structure represent the implicit phenomenal basis, from which the explicit experiences of Macro-Flow and Macro-Structure emerge. Complementary to this theoretical proposal, we present empirical results from qualitative content analysis obtained from 25 healthy participants. The data essentially corroborate the theoretical proposal. With (...) respect to Flow, the phenomenally accessible time experience appeared as a continuous passage reaching from the past through the present into the future. With respect to Structure, the individual present was embedded in the individual biography, emerging from past experiences and comprising individual plans and goals. New or changing plans and goals were being integrated into the existing present, thus forming a new present. The future appeared as changeable within the present, by means from the past, and therefore as a space of potential opportunities. Exemplarily, we discuss these results in relation to previous empirical findings on deviant experiences of time in Autism Spectrum Disorder that is presumably characterized by a breakdown of Flow and concomitant compensatory repetition resulting in an overly structured time. Finally, we speculate about possible implications of these findings both for psychopathological and neuroscientific research. (shrink)

We present a conceptual framework on the experience of time and provide a coherent basis on which to base further inquiries into qualitative approaches concerning time experience. We propose two Time-Layers and two Time-Formats forming four Time-Domains. Micro-Flow and Micro-Structure represent the implicit phenomenal basis, from which the explicit experiences of Macro-Flow and Macro-Structure emerge. Complementary to this theoretical proposal, we present empirical results from qualitative content analysis obtained from 25 healthy participants. The data essentially corroborate the theoretical proposal. With (...) respect to Flow, the phenomenally accessible time experience appeared as a continuous passage reaching from the past through the present into the future. With respect to Structure, the individual present was embedded in the individual biography, emerging from past experiences and comprising individual plans and goals. New or changing plans and goals were being integrated into the existing present, thus forming a new present. The future appeared as changeable within the present, by means from the past, and therefore as a space of potential opportunities. Exemplarily, we discuss these results in relation to previous empirical findings on deviant experiences of time in Autism Spectrum Disorder that is presumably characterized by a breakdown of Flow and concomitant compensatory repetition resulting in an overly structured time. Finally, we speculate about possible implications of these findings both for psychopathological and neuroscientific research. (shrink)

A powerful objection against moral conventionalism says that it gives the wrong reasons for individual rights and duties. The reason why I must not break my promise to you, for example, should lie in the damage to you—rather than to the practice of promising or to all other participants in that practice. Common targets of this objection include the theories of Hobbes, Gauthier, Hooker, Binmore, and Rawls. I argue that the conventionalism of these theories is superficial; genuinely conventionalist theories are (...) not vulnerable to the objection; and genuine moral conventionalism is independently plausible. (shrink)

Supportive peer relationships are crucial for mental and physical health. Early adolescence is an especially important period in which peer influence and school environment strongly shape psychological development and maturation of core social-emotional regulatory functions. Yet, there is no integrated evidence based model of SPR in this age group to inform future research and practice. The current meta-analysis synthetizes evidence from 364 studies into an integrated model of potential determinants of SPR in early adolescence. The model encompasses links with 93 (...) variables referring to individual and environmental potential influences on SPR based on cross-sectional correlational data. Findings suggest the central importance of identity and social–emotional skills in SPR. School environment stands out as a compelling setting for future prevention programs. Finally, we underscore an alarming gap of research on the influence of the virtual and online environment on youth's social realm given its unquestionable importance as a globally expanding social interaction setting. Hence, we propose an integrated model that can serve as organizational framework, which may ultimately lead to the adoption of a more structured and integrated approach to understanding peer relationship processes in youth and contribute to overcoming marked fragmentation in the field. (shrink)

On the basis of Bandura’s social cognitive theory, researchers often assume that a teachers’ self-efficacy will have a positive effect on teaching quality. However, the available empirical evidence is mixed. Building on previous research into TSE, we examined whether assessing class-/task-specific TSE gives a more accurate indication of the associations between TSE assessments and student-rated teaching quality. The analyses were based on the English sample of the Teaching and Learning International Survey Video Study. Mathematics teachers rated their self-efficacy beliefs using (...) generalized task-specific TSE items and class-/task-specific TSE items. Their students rated the quality of teaching in their math class. Multilevel regression analyses revealed stronger associations between student-rated teaching quality and class-/task-specific TSE than generalized task-specific TSE. We discuss possible reasons for these results and outline the potential benefits of using class-specific assessments for future TSE research. (shrink)

With the outbreak of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), global researchers were confronted with major challenges. The German National Pandemic Cohort Network (NAPKON) was launched in fall 2020 to effectively leverage resources and bundle research activities in the fight against the coronavirus disease 2019 (COVID-19) pandemic. We analyzed the setup phase of NAPKON as an example for multicenter studies in Germany, highlighting challenges and optimization potential in connecting 59 university and nonuniversity study sites. We examined the ethics application (...) process of 121 ethics submissions considering durations, annotations, and outcomes. Study site activation and recruitment processes were investigated and related to the incidence of SARS-CoV-2 infections. For all initial ethics applications, the median time to a positive ethics vote was less than two weeks and 30 of these study sites (65%) joined NAPKON within less than three weeks each. Electronic instead of postal ethics submission (9.5 days (Q1: 5.75, Q3: 17) vs. 14 days (Q1: 11, Q3: 26), p value = 0.01) and adoption of the primary ethics vote significantly accelerated the ethics application process. Each study center enrolled a median of 37 patients during the 14-month observation period, with large differences depending on the health sector. We found a positive correlation between recruitment performance and COVID-19 incidence as well as hospitalization incidence. Our analysis highlighted the challenges and opportunities of the federated system in Germany. Digital ethics application tools, adoption of a primary ethics vote and standardized formal requirements lead to harmonized and thus faster study initiation processes during a pandemic. (shrink)

More than ever, ‘the headscarf’ is a dominant trope in contemporary ‘Western’ discourses on migration. Within controversies on Muslim ‘others’, ethnicity and gender frequently interweave. In discussions about the Muslim woman, a problematic dichotomy frequently emerges: namely the representation of a Muslim woman who wears the headscarf and is seen as ‘oppressed’ or ‘traditional’. This is opposed to the position of a Muslim woman who does not wear the headscarf and is simultaneously considered a ‘self-determined’ or ‘modern’ Muslim woman. Against (...) this backdrop, this contribution adopts a critical perspective on dichotomising discourses on Muslim women’s practices in relation to wearing the headscarf. In this article the authors examine narrative interviews with four Muslim women, focusing on their subjective experiences and psychological coping strategies with dichotomous and dichotomising stereotypes. An in-depth qualitative analysis shows that these women display a need to constantly justify and negotiate their own positions in relation to wearing the headscarf, regardless of whether the interviewed women actually wear a headscarf or not. Based on this, the authors identify different psychological coping strategies and discuss them critically in a wider framework that draws attention to existing social hierarchies. (shrink)

Following Elizabeth Anscombe, rights exist within practices. A right consists in a bundle of possible and impossible moves within the relevant social 'game', e.g. the practice of private property. What becomes of basic rights on such a social-constructivist conception? Metaphysically, basic rights do not differ from other rights. The right not to be murdered, however, enjoys a transcendental status within Anscombe's moral philosophy, and this construction might extend to other basic rights: Since practical reasoning is directed at the good life, (...) there can be no sound practical inference concluding in murder. Anscombe's argument for this presupposes a particular conception of human dignity, which is quite similar to the dominant conception in contemporary human rights literature. (shrink)

Die Wittgenstein-Schülerin Elizabeth Anscombe zählt zu den einflussreichsten Philosophinnen des 20. Jahrhunderts. Mit der Monographie Absicht begründete sie die analytische Handlungstheorie, viele ihrer Abhandlungen gelten als Klassiker, aber nur wenige liegen bislang in deutscher Übersetzung vor. Der vorliegende Band füllt diese Lücke: Er versammelt zwölf von Anscombes wichtigsten Aufsätzen, die thematisch von der praktischen Philosophie über die Metaphysik und die Philosophie des Geistes bis hin zu Aristoteles- und Wittgenstein-Interpretationen reichen, also das ganze Spektrum ihres Denkens repräsentieren. Die Anmerkungen und Erläuterungen (...) der Herausgeber sowie das Nachwort von Anselm W. Müller erschließen die Texte und bieten zusätzliche Einblicke in das facettenreiche Werk dieser solitären Denkerin. (shrink)

Das wachsende wissenschaftliche Interesse an Tieren, ihren Fähigkeiten und Interaktionen mit den Menschen sowie verhaltensbiologische Erkenntnisse und tierphilosophische Einsichten führen zu einer Neubewertung der Mensch-Tier-Beziehung. Dies bleibt nicht ohne Konsequenzen für die Theologie. Sie muss nach den philosophischen und theologischen Ursachen für ihre weitgehende „Tiervergessenheit“ fragen sowie die Potenziale entfalten, die zum Beispiel die Heilige Schrift und die Schöpfungsspiritualität für die Gestaltung der Beziehung zu den Tieren bieten. Dabei balanciert sie auf dem schmalen Grat, den Mensch-Tier-Differentialismus zu überwinden, ohne das (...) je Eigene von Menschen und Tieren zu verwischen. Dieser Band leistet eine interdisziplinäre Annäherung an eine christliche Tierethik, die sich nicht als isolierte binnenphilosophische oder -theologische Bereichsethik versteht, sondern Antworten sucht auf gesamtgesellschaftliche Auseinandersetzungen mit Fragen der Mensch-Tier-Beziehung. Mit Beiträgen von Andreas Aigner, Heike Baranzke, Martina Besler, Julia Blanc, Katharina Ebner, Matthias Eggel, Julia Enxing, Matthias Gauly, Herwig Grimm, Anita Idel, Kurt Kotrschal, Peter Kunzmann, Martin M. Lintner, Susana Monsó, Ute Neumann-Gorsolke, Jakob Ohm, Christina Potschka, Kurt Remele, Michael Rosenberger, Markus Vogt und Markus Wild. (shrink)

A recent wave of academic and popular publications say that utopia is within reach: Automation will progress to such an extent and include so many high-skill tasks that much human work will soon become superfluous. The gains from this highly automated economy, authors suggest, could be used to fund a universal basic income (UBI). Today's employees would live off the robots' products and spend their days on intrinsically valuable pursuits. I argue that this prediction is unlikely to come true. Historical (...) precedent speaks against it, but the main problem is that the prediction fundamentally misunderstands how capitalism works—its incentives to increase or decrease production, its principles of income allocation, and the underlying conception of merit. (shrink)