BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of artificial intelligence (AI) technologies (or AI-inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we start by examining the conditions under which we can have institutional epistemic trust in AI-inclusive healthcare systems and their members as providers of medical information and advice. In particular, we discuss that institutional epistemic trust in AI-inclusive healthcare depends, in part, on (...) the reliability of AI-inclusive medical practices and programs, its knowledge and understanding among different stakeholders involved, its effect on epistemic and communicative duties and burdens on medical professionals and, finally, its interaction and alignment with the public’s ethical values and interests as well as background sociopolitical conditions against which AI-inclusive healthcare systems are embedded. To assess the applicability of these conditions, we explore a recent proposal for AI-inclusivity within the Dutch Newborn Screening Program. In doing so, we illustrate the importance, scope, and potential challenges of fostering and maintaining institutional epistemic trust in a context where generating, assessing, and providing reliable and timely screening results for genetic risk is of high priority. Finally, to motivate the general relevance of our discussion and case study, we end with suggestions for strategies, interventions, and measures for AI-inclusivity in healthcare more widely. (shrink)

In In Praise of Theatre, an interview with Alain Badiou held by Nicolas Truong, Badiou answers questions about his ideas on the value and purpose of theatre. He explains that he takes ‘real theatre’ to be theatre that consists of performances that aim at making the members of the audience to reflect critically on what they have just heard or seen and, more importantly, the possibilities that were only implied by the performance. Contrary to disciplines such as philosophy, politics and (...) literature, Badiou argues, theatre is uniquely suited for this purpose, because it takes place in a ‘here and now’ that is shared by performers and audience, which places the audience in a position to ‘grasp the relation between immanence and transcendence from the view of the idea’. In addition, it uses an indirect mode of representation, instead of a direct mode of teaching. While accepting Badiou’s claim that theatre performances form a valuable means to question social conventions by communicating and transforming subjectivity, in this article I will argue that Badiou’s enthusiasm about the possibilities of theatre lead him to exaggerate its uniqueness in relation to philosophy, politics and literature. That is to say, he stretches the differences between these disciplines too far by portraying them as opposites or even rivals. In what follows, I will show for each of the comparisons that Badiou makes between theatre and these other disciplines, that they are founded on a misunderstanding of theatre’s unique position when it comes to transforming subjectivity through communication. (shrink)

The article advocates the importance of studying conceptual meaning and change in modern mass media and highlights the significance of conceptual intermediality. The article first analyzes anger in Hindi cinema as an audiovisual key concept within the framework of an Indian national ideology. It explores how anger and the Indian angry young man became popularized, politicized, and stereotyped by popular films and print media in India in the 1970s and 1980s. The article goes on to advocate for extending conceptual history (...) beyond language on theoretical grounds and identifies two major obstacles in political iconography: the methodological subordination of visuals to language in the negotiation of meaning, and the distinction of emotion and reason by assigning them functionally to different sign systems. (shrink)

Neuronal ceroid lipofuscinoses are a group of lethal inherited neurodegenerative disorders in humans and many animal species. Critical reflections on a range of ethical issues concerning NCL have been instigated by my research on sheep and cattle affected with NCL, the claim that these sheep and cattle are useful models for the disease in humans, and engagement with families and support groups. My reflections on moral status of animals and validity of animal models are outlined in this paper.

In this paper I consider emotions as the ability to grasp meaningfulness, understood as an essential component of (social) reality, which is necessary for a rational discourse and which cannot be apprehended by means of a supposedly “sober” approach. I explicitly take into account the socio-cultural situatedness of feeling subjects and put epistemically relevant emotional abilities into perspective. This approach reveals that emotions can also contribute to questioning one’s own world view and to being able to correct it if necessary. (...) The ability tobe affectively disrupted, as I call it, enables one to see the contingency of one’s emotion repertoire and habitualised schemata of grasping meaningfulness. Further, a severe affective disruption can bring about a transformation of one’s emotion repertoire and habitualised schemata, thus permanently altering the subject’s epistemic position and epistemic practice. (shrink)

This article’s guiding thesis is that the theory of radical democratic citizenship is built on a tension between a radical, conflictual element and a democratic element. As radical democrats, these philosophers point to the intimate relation between conflict and both emancipation and democracy. But as radical democrats, they also propose different methods that prevent conflict from breaking up the polis—the common ground that makes democratic conflict possible. I look at two radical democrats’ way of dealing with this tension: Chantal Mouffe (...) and Étienne Balibar. My claim is that the former ends up overemphasising the danger of division in her later democratic works and is therefore unable to account for more intense forms of democratic resistance (such as riots). In the work of Balibar, however, we find a way of dealing with this tension. (shrink)

In this article, I reconstruct Étienne Balibar’s work against the background of the debate on modern universal citizenship. I argue that universal citizenship is neither fundamentally emancipatory nor fundamentally oppressive but is rather both. In order to defend this position, I build on Balibar’s concept of the “citizen subject.” First, I parse this concept, showing how it allows us to think about the contradictions of modern universal citizenship. In the second section, I elucidate its temporal logic and show how it (...) undermines the telos of modern universal citizenship. In sections three to five, I show how citizenship’s universalism clarifies both its oppressive and its emancipatory thrust. The dialectic of universal citizenship, I argue, unfolds as a conflict between and within political universals. In the conclusion, I will tie up these different strands and end with some reflections on the conditions of possibility of this dialectic. (shrink)

University students are at elevated risk for psychological distress, especially during the COVID-19 pandemic. The aim of this study was to warmly contact our students and investigate the psychological impact of the COVID-19 pandemic on the subjective wellbeing and levels of psychological symptoms of university students in Belgium. All bachelor and master students of the Vrije Universiteit Brussels were invited for a brief structured telephone interview in March, 2021. In total, 7,154 students were assessed by a structured interview, based on (...) the Kessler Psychological Distress Scale and the Anamnestic Comparative Self-Assessment. Compared to a representative sample, students considered their life during the pandemic as less satisfying compared to their life before the pandemic. Overall, all students have suffered from COVID-19 and the measures taken to contain the pandemic. Twenty percent of our sample of 7,154 VUB students scored above the K6 cutoff, indicating a heightened risk for having a diagnosable mental illness severe enough to cause functional limitations and to require treatment. This study highlights the need for psychological support for all students, during the COVID-19 pandemic. (shrink)

Philosophy & Social Criticism, Volume 48, Issue 6, Page 904-933, July 2022. In this article, I reconstruct Étienne Balibar’s work against the background of the debate on modern universal citizenship. I argue that universal citizenship is neither fundamentally emancipatory nor fundamentally oppressive but is rather both. In order to defend this position, I build on Balibar’s concept of the “citizen subject.” First, I parse this concept, showing how it allows us to think about the contradictions of modern universal citizenship. In (...) the second section, I elucidate its temporal logic and show how it undermines the telos of modern universal citizenship. In sections three to five, I show how citizenship’s universalism clarifies both its oppressive and its emancipatory thrust. The dialectic of universal citizenship, I argue, unfolds as a conflict between and within political universals. In the conclusion, I will tie up these different strands and end with some reflections on the conditions of possibility of this dialectic. (shrink)

A groundbreaking, deeply personal, magnum opus on madness and philosophy from a psychotic patient turned philosopher.

The objective of this doctoral dissertation is to interpret the explanation of akrasia that the Dutch philosopher Benedictus Spinoza (1632-1677) gives in his work The Ethics. One is said to act acratically when one intentionally performs an action that one judges to be worse than another action which one believes one might perform instead. In order to interpret Spinoza’s explanation of akrasia, a large part of this dissertation investigates Spinoza’s theory of emotion. The first chapter is introductory and outlines Spinoza’s (...) categorisation of mental states and his conception of the relation between the mind and the body. The second chapter deals with Spinoza’s epistemology and the relation between cognitive mental states and states of the brain. The third chapter argues that Spinoza holds that emotions are non-cognitive mental states that are caused by cognitive mental states. The fourth chapter interprets Spinoza’s discussion of the emotions of Joy and Sadness insofar as they are mental states. The fifth chapter suggests that when Spinoza says that the power of our body is increased or decreased when we are joyful or sad, he means that when we are joyful or sad then, at the same time, our heart and perhaps the organs of our digestive system are affected in such a way that our bodily health is increased or decreased. The sixth chapter points to three problems that concern Spinoza’s definitions of the psychophysical states of pleasure, pain, cheerfulness and melancholy, and offers slightly altered definitions of these states. The seventh chapter interprets the various aspects of Spinoza’s conception of the emotion of Desire, both insofar as it is a state of the mind and insofar it is a state of the body, as well as the relation between the emotion of Desire and man’s striving for self-preservation. The eighth chapter discusses what Spinoza writes on the strength of emotions and the way in which we make value judgments in order to finally interpret why it is, according to Spinoza, that ‘we so often see the better for ourselves but follow the worse’. (shrink)

Situated approaches to affectivity overcome an outdated individualistic perspective on emotions by emphasizing the role embodiment and environment play in affective dynamics. Yet, accounts which provide the conceptual toolbox for analyses in the philosophy of emotions do not go far enough. Their focus falls on the present situation, abstracting from the broader historico-cultural context, and on adopting a largely functionalist approach by conceiving of emotions and the environment as resources to be regulated or scaffolds to be used. In this paper, (...) I argue that we need to take situatedness seriously: We need to acknowledge that emotions are not situated in undetermined “contexts” but in concrete socio-culturally specific practices referring to forms of living; and to agree that not only are context and emotions used for the sake of something else but also that the meaning-disclosive dimension of affective intentionality is structured by situatedness as well. To do so, I offer a multidimensional approach to situatedness that integrates the biographical and cultural dimensions of contextualization within the analysis of situated affective dynamics. This approach suggests that humans affectively disclose meaning which is at once product and producer of specific forms of living – and these are always already subjects of critique. (shrink)

In response to critiques of rights as moralistic and depoliticising, a literature on the political nature and contestability of rights has emerged. In this view, rights are not merely formal, liberal and moralistic imperatives, but can also be invoked by the excluded in a struggle against domination. This article examines the limits to this practice of rights-claiming and its implication in forms of domination. It does this by returning to Marx’s blueprint for the critique of subjective rights. This engagement with (...) Marx will, however, take a particular form. I will read Marx first through the eyes of Claude Lefort and thereafter against Lefort. The latter’s critique of Marx still constitutes the strongest case against the dismissal of subjective rights. Introducing a reading of Lefort into the argument allows us to discover what is dead and what is well alive in the Marxist theory of rights. What is dead, I will argue, is Marx’s early conception of subjective rights as ideology and illusion. However, the more mature Marx developed a theory and critique of the legal form that is able to explain why the politics of rights—despite its undeniable advances—has not been able to overcome certain forms of domination. (shrink)

In order to explore how emotions contribute positively or negatively to understanding the meaning of complex socio-culturally specific phenomena, I argue that we must take into account the habitual dimension of emotions – i.e., the emotion repertoire that a feeling person acquires in the course of their affective biography. This brings to light a certain form of alignment in relation to affective intentionality that is key to comprehending why humans understand situations in the way they do and why it so (...) often is especially hard to understand things _differently_. A crucial epistemic problem is that subjects often do not even enter a process of understanding, i.e., they do not even start to consider a specific object, theory, circumstance, other being, etc. in different ways than the familiar one. The epistemic problem at issue thus lies in an unquestioned faith in things being right the way they are taken to be. By acknowledging the habitual dimension of affective intentionality, I analyze reasons for this inability and suggest that being affectively disruptable and cultivating a pluralistic emotion repertoire are crucial abilities to overcome this epistemic problem. (shrink)

In an effort to inform the discussion surrounding existential risks from AI, we formulate Extinction-level Goodhart’s Law as “Virtually any goal specification, pursued to the extreme, will result in the extinction of humanity”, and we aim to understand which formal models are suitable for investigating this hypothesis. Note that we remain agnostic as to whether Extinction-level Goodhart’s Law holds or not. As our key contribution, we identify a set of conditions that are necessary for a model that aims to be (...) informative for evaluating specific arguments for Extinction-level Goodhart’s Law. Since each of the conditions seems to significantly contribute to the complexity of the resulting model, formally evaluating the hypothesis might be exceedingly difficult. This raises the possibility that whether the risk of extinction from artificial intelligence is real or not, the underlying dynamics might be invisible to current scientific methods. (shrink)

Many theories of global distributive justice are based on the assumption that all humans hold common ownership of the earth. As the earth is finite and our actions interconnect, we need a system of justice that regulates the potential appropriation of the common earth to ensure fairness. According to these theories, imposing limits and distributive obligations on private and public property arrangements may be the best mechanism for governing common ownership. We present a critique of the assumption that this issue (...) can be solved within the private–public property regime, arguing that the boundaries of this regime should not be taken for granted and that the growing literature on the democratic commons movement suggests how this can be accomplished. We consider that, if the earth is defined as a common, the private– public property paradigm must be open to questioning, and democratic commoners’ activities should be considered. (shrink)

Bacteria have developed an impressive ability to survive and propagate in highly diverse and changing environments by evolving phenotypic heterogeneity. Phenotypic heterogeneity ensures that a subpopulation is well prepared for environmental changes. The expression bet hedging is commonly (but often incorrectly) used by molecular biologists to describe any observed phenotypic heterogeneity. In evolutionary biology, however, bet hedging denotes a risk‐spreading strategy displayed by isogenic populations that evolved in unpredictably changing environments. Opposed to other survival strategies, bet hedging evolves because the (...) selection environment changes and favours different phenotypes at different times. Consequently, in bet hedging populations all phenotypes perform differently well at any time, depending on the selection pressures present. Moreover, bet hedging is the only strategy in which temporal variance of offspring numbers per individual is minimized. Our paper aims to provide a guide for the correct use of the term bet hedging in molecular biology. (shrink)

Many theories of global distributive justice are based on the assumption that all humans hold common ownership of the earth. As the earth is finite and our actions interconnect, we need a system of justice that regulates the potential appropriation of the common earth to ensure fairness. According to these theories, imposing limits and distributive obligations on private and public property arrangements may be the best mechanism for governing common ownership. We present a critique of the assumption that this issue (...) can be solved within the private–public property regime, arguing that the boundaries of this regime should not be taken for granted and that the growing literature on the democratic commons movement suggests how this can be accomplished. We consider that, if the earth is defined as a common, the private– public property paradigm must be open to questioning, and democratic commoners’ activities should be considered. (shrink)

In the Netherlands, current policy opinion emphasizes demand-driven health care. Central to this model is the view, advocated by some Dutch health policy makers, that patients should be encouraged to be aware of and make use of health quality and health outcomes information in making personal health care provider choices. The success of the new health care system in the Netherlands is premised on this being the case. After a literature review and description of the new Dutch health care system, (...) the adequacy of this demand-driven health policy is tested. The data from a July 2005, self-administered questionnaire survey of 409 patients (response rate of 94%) as to how they choose a hospital are presented. Results indicate that most patients did not choose by actively employing available quality and outcome information. They were, rather, referred by their general practitioner. Hospital choice is highly related to the importance a patient attaches to his or her physician’s opinion about a hospital. Some patients indicated that their hospital choice was affected by the reputation of the hospital, by the distance they lived from the hospital, etc. but physician’s advice was, by far, the most important factor. Policy consequences are important; the assumptions underlying the demand-driven model of patient health provider choice are inadequate to explain the pattern of observed responses. An alternative, more adequate model is required, one that takes into account the patient’s confidence in physician referral and advice. (shrink)

The study is designed to provide an informal summary of what is known about consumer switching of health insurance plans and to contribute to knowledge about what motivates consumers who choose to switch health plans. Do consumers switch plans largely on the basis of critical reflection and assessment of information about the quality, and price? The literature suggests that switching is complicated, not always possible, and often overwhelming to consumers. Price does not always determine choice. Quality is very hard for (...) consumers to understand. Results from a random sample survey ( n = 2791) of the Alkmaar region of the Netherlands are reported here. They suggest that rather than embracing the opportunity to be active critical consumers, individuals are more likely to avoid this role by handing this activity off to a group purchasing organization. There is little evidence that consumers switch plans on the basis of critical reflection and assessment of information about quality and price. The new data reported here confirm the importance of a group purchasing organizations. In a free-market-health insurance system confidence in purchasing groups may be more important for health insurance choice than health informatics. This is not what policy makers expected and might result a less efficient health insurance market system. (shrink)

The article engages Bakhtin’s corpus with Nietzschean ideas in order to draw out critical resources for the social theory of ‘community’. It begins by considering both thinkers’ debt to neo-Kantianism, and proceeds to relate the ‘will to power’ to Bakhtin’s early intersubjective phenomenology of intentional acts. This interpretation is then extended to Bakhtin’s conception of art, where aesthetics stands in tensile relation to ethics in the exercise of authorial will. Bakhtin’s later work might be seen as elaborating more complex terms (...) for describing will and event, now as composite embodiments of multiple intentions within art, discourse and language, thus suggesting a novel approach to ‘communality’ in modern social life. (shrink)

Beneficence is a foundational ethical principle in medicine. To provide benefit to a patient is to promote and protect the patient’s wellbeing, to promote the patient’s interests. But there are different conceptions of wellbeing, emphasizing different values. These conceptions of wellbeing are contrary to one another and give rise to dissimilar ideas of what it means to benefit a patient. This makes the concept of beneficence ambiguous: is a benefit related to the patient’s goals and wishes, or is it a (...) matter of objective criteria that constitute wellbeing? This paper suggests a unified conception of wellbeing for use in medicine to determine what counts as a benefit. Two components of wellbeing are identified: (1) objective functioning/health and (2) the patient’s view of her own good. The paper explores how to apply, balance, and weigh these components in clinical situations to determine what counts as a benefit to a patient. (shrink)

For many years the prevailing paradigm for medical decision making for children has been the best interest standard. Recently, some authors have proposed that Mill’s “harm principle” should be used to mediate or to replace the best interest standard. This article critically examines the harm principle movement and identifies serious defects within the project of using Mill’s harm principle for medical decision making for children. While the harm principle proponents successfully highlight some difficulties in present-day use of the best interest (...) standard, the use of the harm principle suffers substantial normative and conceptual problems. A medical decision-making framework for children is suggested, grounded in the four principles. It draws on the best interest standard, incorporates concepts of harm, and provides two questions that can act as guide and limit in medical decision making for children. (shrink)

In this paper, we explore a rationalistic orientation in Western society. We suggest that this orientation is one of the predominant ways in which Western society tends to frame, understand and deal with a majority of problems and questions – namely in terms of mathematical analysis, calculation and quantification, relying on logic, numbers, and statistics. Our main goal in this paper is to uncover the affective structure of this rationalistic orientation. In doing so, we illustrate how this orientation structures the (...) way not only individuals but society as a whole frames and solves problems. We firstly point towards some exemplary instances of the rationalistic orientation, specifically regarding science, society, and lifeworld practice. Crucially, we argue that the rationalistic orientation is not merely based on a set of beliefs we could easily correct; but rather, that it is an affective condition tacitly shaping our engagement with the world in an encompassing way. Relating to the work of Martin Heidegger, we argue that what we have called an orientation in the beginning is in fact a rationalistic attunement. This attunement fundamentally shapes the pre-reflective level of how individuals approach the world. We elaborate this claim by showing how the rationalistic attunement concretely manifests in tangible socio-material affect dynamics. In the end, we motivate a critical stance towards this attunement, providing the ability to reflect upon and question instances where this way of framing and solving problems is counterproductive. (shrink)

The 2005 UNESCO Convention on the Protection and Promotion of the Diversity of Cultural Expressions provides an international policy lens for analysing broad debates on issues of cultural globalization and development. The interdisciplinary contributions in this volume offer a fresh understanding of these key issues whilst examining cultural globalization, which is conceived in terms of artistic expressions and entertainment industries and interpreted anthropologically as the rituals, symbols, and practices of everyday life. The broad gamut of theories, methods, and evidence collected (...) by the editors outlines UNESCO's accomplishments, shortcomings, and future policy prospects. This edited collection has a clear message: The Convention is a useful and important instrument in the debate on cultural diversity, but not broad enough or sufficient to confront major challenges concerning human rights, sustainability, and cultural diversity as a whole. (shrink)

This work clarifies the role of the best interest standard (BIS) as ethical principle in the medical care of children. It relates the BIS to the ethical framework of medical practice. The BIS is shown to be a general principle in medical ethics, providing grounding to prima facie obligations. The foundational BIS of Kopelman and Buchanan and Brock are reviewed and shown to be in agreement with the BIS here defended. Critics describe the BIS as being too demanding, narrow, opaque, (...) not taking the family into account and not suitable as limiting principle. This work responds to these criticisms, showing that they do not stand up to scrutiny. They either do not apply to the BIS, only apply to misuses of the BIS or criticise a BIS that is not seriously defended in the literature. (shrink)