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)

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)

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)

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)

The possibilities for collecting, storing, and processing of data have increased significantly over the last decades. It has been argued that an increasing demand for health data will de...

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)

Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international health data sharing. Despite the recent adoption of the EU General Data Protection Regulation, the procedures for how to govern responsible data sharing in such projects are not at all spelled out yet. In search of a first, basic outline of an ethical governance framework, we (...) set out to explore relevant ethical principles and norms. We performed a systematic review of literature and ethical guidelines for principles and norms pertaining to data sharing for international health research. We observed an abundance of principles and norms with considerable convergence at the aggregate level of four overarching themes: societal benefits and value; distribution of risks, benefits and burdens; respect for individuals and groups; and public trust and engagement. However, at the level of principles and norms we identified substantial variation in the phrasing and level of detail, the number and content of norms considered necessary to protect a principle, and the contextual approaches in which principles and norms are used. While providing some helpful leads for further work on a coherent governance framework for data sharing, the current collection of principles and norms prompts important questions about how to streamline terminology regarding de-identification and how to harmonise the identified principles and norms into a coherent governance framework that promotes data sharing while securing public trust. (shrink)

This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of AI technologies (or AI- Inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we examine the conditions under which we can have institutional epistemic trust in AI- inclusive healthcare systems and their members' medical information providers. 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 amongst different stakeholders, its effect on epistemic and communicative duties and burdens on medical professionals, and finally, its interaction with ethical values and interests as well as background socio-political conditions which shape AI-inclusive healthcare systems. To assess the applicability of these conditions, we explore a proposal for AI-inclusivity within the Dutch Newborn Screening Program, thereby illustrating 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 provide suggestions for strategies, interventions, and measures for AI-inclusivity in healthcare more widely. (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)

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 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)

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)

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)

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)

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)

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)

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)

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)

"Philosophy for Children" has preponderantly started from the assumption that there is no fundamental difference between the thinking of adults and the thinking of children: both make use of the same mental operations. Moreover, children seem to be interested in the same basic questions about life and its meaning as adults. So children and adults apparently perform the same activities when they join in philosophical discussions. It is also easily assumed that children are particularly apt to philosophical thinking, because they (...) are inquisitive, unconventional and - contrary to traditional educational opinion - rational, often even more so than adults. (shrink)