Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving (...) patients in biomedical research aiming to address its main challenges. (shrink)

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice (...) early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration. (shrink)

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving (...) patients in biomedical research aiming to address its main challenges.After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in biomedical research. It should enable patients to put forward their experiential knowledge, to develop a rich view of what an envisioned innovation might look like and do, and to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method ‘Voice of patients’, and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients’ experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients’ considerations into recommendations relevant to researchers’ activities. It also seems wise to broaden the audience for patients’ considerations to other actors working on a specific innovation. (shrink)

An important discussion in contemporary ethics concerns the relevance of empirical research for ethics. Specifically, two crucial questions pertain, respectively, to the possibility of inferring normative statements from descriptive statements, and to the danger of a loss of normativity if normative statements should be based on empirical research. Here we take part in the debate and defend integrated empirical ethical research: research in which normative guidelines are established on the basis of empirical research and in which the guidelines are empirically (...) evaluated by focusing on observable consequences. We argue that in our concrete example normative statements are not derived from descriptive statements, but are developed within a process of reflection and dialogue that goes on within a specific praxis. Moreover, we show that the distinction in experience between the desirable and the undesirable precludes relativism. The normative guidelines so developed are both critical and normative: they help in choosing the right action and in evaluating that action. Finally, following Aristotle, we plead for a return to the view that morality and ethics are inherently related to one another, and for an acknowledgment of the fact that moral judgments have their origin in experience which is always related to historical and cultural circumstances. (shrink)

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice (...) early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration. (shrink)

The term “emotional practices” is gaining currency in the historical study of emotions. This essay discusses the theoretical and methodological implications of this concept. A definition of emotion informed by practice theory promises to bridge persistent dichotomies with which historians of emotion grapple, such as body and mind, structure and agency, as well as expression and experience. Practice theory emphasizes the importance of habituation and social context and is thus consistent with, and could enrich, psychological models of situated, distributed, and (...) embodied cognition and their approaches to the study of emotion.It is suggested here that practices not only generate emotions, but that emotions themselves can be viewed as a practical engagement with the world. Conceiving of emotions as practices means understanding them as emerging from bodily dispositions conditioned by a social context, which always has cultural and historical specificity. Emotion-as-practice is bound up with and dependent on “emotional practices,” defined here as practices involving the self , language, material artifacts, the environment, and other people. Drawing on Pierre Bourdieu's concept of habitus, the essay emphasizes that the body is not a static, timeless, universal foundation that produces ahistorical emotional arousal, but is itself socially situated, adaptive, trained, plastic, and thus historical. Four kinds of emotional practices that make use of the capacities of a body trained by specific social settings and power relations are sketched out—mobilizing, naming, communicating, and regulating emotion—as are consequences for method in historical research. (shrink)

This paper examines how middle managers in the long term care sector use the discourse of professionalism to create ‘appropriate’ work conduct of care workers. Using Watson’s concept of professional talk, we study how managers in their daily work talk about professionalism of vocationally skilled care workers. Based on observations and recordings of mundane conversations by middle managers, we found four different professional talks that co-exist: appropriate looks and conduct, reflectivity about personal values and ‘good’ care, methodical work methods, competencies. (...) Jointly, these professional talks constitute an important discursive resource for middle managers to facilitate change on the work floor. Change involves the reconfiguration of care work and different managerial-worker relations. Middle managers use professional talks in both enabling and disenabling ways vis-à-vis care workers. Based on these findings, we suggest a more nuanced portrayal of the relationship between managers and professionals. Rather than being based on an intrinsic opposition, i.e. ‘managers versus professionals’, this relationship is flexibly reconstructed via professional talk. (shrink)

This special section is the outcome of a conference organized in Würzburg, as part of the interdisciplinary research project Motivational and Volitional Processes of Human Integration: Philosophical and Psychological Approaches to Human Flourishing (2018–2021). The goal of the project was to connect (philosophical) perspectives on flourishing to empirical research that suggests that implicit motives play an important role in who we are and what we do and decide. One main aim was to find a middle ground between two extremes that (...) conceptualize implicit motives either as recalcitrant states that hamper flourishing, or as reflecting who we really are, much more than our explicit motives. We propose that both implicit and explicit motives are crucial to flourishing. The articles in this special section bring up other important questions as well. First of all, what is the role of the external world? It seems to be crucial for being a self, but it may also hamper flourishing. And second, how should the relationship between the self as basic subjectivity, and the self with certain values, desires, and intentions be understood? (shrink)

Ideally, pro-environmental consumer behavior leads to a lower impact on the environment. However, due to negative behavioral spillovers environmentally friendly behavior could lead to an overall higher environmental impact if subsequent environmentally unfriendly behavior occurs. In this exploratory interview study we focused on two pathways leading to negative spillover: a psychological path and an economic path. We wanted to gain insight into people’s motivations to behave environmentally unfriendly and to explore people’s level of awareness of both pathways. Our results indicate (...) that pro-environmental behaviors that are associated with higher effort are performed less frequently, and that when people do not perform these behaviors they associate them with higher effort levels. When people perceive behaviors as more effortful they increasingly seem to use arguments to motivate and rationalize why performing the behavior is difficult or impossible. Moreover, we found that although some people can imagine that moral licensing and rebound effects could occur and can provide examples from their own lives, most people assess these concepts as not rational. People seem unaware of the relation between a first pro-environmental behavior and a subsequent behavior, and therefore inconsistencies in behavior go unnoticed. As people are good at rationalizing why they do not perform specific PEBs, they in general feel satisfied with their own pro-environmental actions. In order to discourage negative spillovers, we describe a number of approaches and research ideas aimed at taking away the grounds for rationalization. (shrink)

Neuroscience and the Illusion of Free WillCurrently, few neuroscientists and philosophers still defend the claim that neuroscience has shown the brain ‘decides’ what we do and that free will is an illusion. This does not imply, however, that this kind of neuroscientific researchcould notsay anything about the existence of free will. Neuroscience can offer insights in the unconscious causes and underlying processes of our actions and, because of this, could perhaps show whether we act out of free will or not. (...) In this paper I will argue that in this regard the possibilities of neuroscientific research are limited. I understand free will, in line with Dana Nelkin and Susan Wolf, as the ability to do the right thing for the right reasons. I will show that whether someone acts intentionally, what it is that she is doing, and for which reasons she acts cannot be determined by studying unconscious causes or other unconscious processes related to the action. The action and reason necessarily depend on the perspective of the acting agent. Furthermore, neuroscientific research cannot show us whether the reasons and the actions areright. It could perhaps offer a unique contribution when it comes to the question of whether we areableto the right thing for the right reasons. To what extent it can remains an open question. (shrink)

Does it follow from Wittgenstein's views about indeterminism that irregularities of nature could take place? Did he believe that chairs could simply disappear and reappear, that water could behave differently than it has, and that a man throwing a fair die might throw ones for a week? Or are these things only imaginable? Is his view simply that if we adopted an indeterministic point of view we would no longer look for causes, or would not always look for causes, because (...) we would no longer assume that there must be a cause of each event? (shrink)

This essay analyzes the complexities of a seemingly innocuous situation, namely when lesbian couples are asked whether they are sisters, with the help of Sara Ahmed’s contribution to queer theory. Ahmed shows such sister-confusion to be situated in a compulsory heterosexual world wherein queer movements become disorientating. To solve such disorientation, queers get ‘straightened’ in everyday encounters: a couple is dismissed as sisters, for example. Staying with disorientation, however, and lingering in the ‘queer moment’, can foster insight into how a (...) heterosexual orientation is organized in daily life rather than ‘natural’. Ahmed argues that any ‘strange’ movement holds such potential to address the coercion that lies behind dominant orientations – not only heterosexuality but also, for example, whiteness. From this insight follows a choice between reproducing dominant paths or exploring different ones instead. Put differently, and in the spirit of Bonnie Honig, the figure of the stranger can open up our world. Whereas the sister-confusion poses a ‘hail’ to stay ‘in line’ with heterosexuality as a dominant orientation, Ahmed encourages us not to turn around in response and get stuck in its lines, but rather to continue exploring where else we might go. (shrink)

I criticize the ‘Humean’ view of reasons for actions, the view that the reasons for an action can be stated in terms of desires and beliefs. I point out that this view must ignore concepts which are central to our understanding of human actions, namely, intention, motivation and associated concepts such as decision. One can then see just how inadequate the Humean view is.

If one thinks of intentions as entities of some sort, states or dispositions, for example, it should eventually strike him that there are peculiar difficulties with the idea. For example, he will have trouble counting his intentions. In a particular situation, we ask someone, ‘What are you going to do about that? And this?’ And his answer might be, ‘My intention is to pay that, and, as for this, my intention is to ignore it.’ But of course he may have (...) said, ‘My intention is to pay this and ignore that.’ For this reason and, as we will see, others, there is no such thing as a complete list of intentions that a person has. If someone told us, ‘I have just eight intentions at present’, we would think he was joking, even though he intends to do eight things—grade papers, meet a class at nine, and so on. And if we ask; ‘What are you going to do today?’, he may answer that he has a class at nine, office hours at two, and lunch already scheduled. But even though he has more to do today than yesterday, he would hardly tell us, ‘I am afraid I have more intentions today than I did yesterday.’. (shrink)

In contemporary discussions of the concept of intention, the assumption is made that an intention results from a person's decision, or resolution, or plan, or the like. And the intention persists, generally, until the appropriate action is carried out. However, intentions cannot be said to have temporal duration, or beginnings, or endings. And it is not necessary for a person who is intending to do something to have made a decision to do it, or a resolution, or anything else. It (...) may be that a person acquires an intention because of the circumstances that he finds himself in. If one sees that a tricycle is in front of his car, he will move it. No decision is necessary, obviously, because running over it would be contrary to common sense. Or one may gradually come to realise that he is obliged to do something and thereupon acquires the intention to do it. By focusing on one kind of intention, the “desire‐belief” theories have failed to realise that intentions originate in various ways, and for various reasons. (shrink)

Small, mass-produced pipe-clay figurines were popular devotionalia in the late medieval Low Countries. In this paper, focusing on representations of the Christ Child, I study the sensory and playful ways in which such objects were used as ‘props of perception’ in spiritual games of make-believe or role-play. Not only does this particular iconography invite tactile and playful behaviour, the figurines fit within a larger context of image practices involving visions and make-believe. Through such practices images were animated and imbued with (...) a divine power. Contemporary written sources suggest that, especially for women, ownership of and sensory engagement with small-scale figures provided them with agency. (shrink)

In this paper, I argue that instead of primarily paying attention to the nature of implicit attitudes that are taken to cause implicit discrimination, we should investigate how discrimination can be implicit in itself. I propose to characterize implicit discrimination as unintentional discrimination: the person responds to facts unintentionally and often unconsciously which are, given their end, irrelevant and imply unfair treatment. The result is a unified account of implicit bias that allows for the different ways in which it can (...) display itself and can be explained. Furthermore, the view can account for the central characteristics of implicit bias: (1) that it is, for a variety of reasons, difficult to control, (2) that we are not necessarily unconscious of implicit bias but not properly conscious either, and (3) that we can unintentionally discriminate regardless of whether we claim to care about fairness. (shrink)

Surprisingly little attention has been paid to the nature of conscious control. As a result, experiments suggesting that we lack conscious control over our actions cannot be properly evaluated. Joshua Shepherd (2015; 2021) aims to fill this gap. His proposal is grounded in the standard causalist account of action, according to which, simply put, bodily movements are controlled by the agent if and only if they are caused, in the right way, by the relevant psychological states. In this paper, I (...) argue that the proposal does not succeed in distinguishing between mere causation and actual control; it does not solve the problem of deviant causation. On the basis of my criticism, Anscombean action theory promises to offer a valuable perspective. It suggests that an important function of consciousness is to integrate an action into a rational whole. If this is on the right track, it supports Shepherd’s overall claim that the importance of consciousness for action control is often underestimated, because this contribution of consciousness may often go unnoticed in experimental settings. (shrink)

The development of gene therapy has always come with the expectation that it will offer a cure for various disorders, of which hemophilia is a paradigm example. However, although the term is used regularly, it is unclear what exactly is meant with “cure”. Therefore, the aim of this paper is to analyse how the concept of cure is used in practice and evaluate which of the interpretations is most suitable in discussions surrounding gene therapy. We analysed how cure is used (...) in four different medical fields where the concept raises discussion. We show that cure can be used in three different ways: cure as normalization of the body, cure as obtaining a normal life, or cure as a change in identity. We argue that since cure is a practical term, its interpretation should be context-specific and the various uses can exist simultaneously, as long as their use is suitable to the function the notion of cure plays in each of the settings. We end by highlighting three different settings in the domain of hemophilia gene therapy in which the term cure is used and explore the function(s) it serves in each setting. We conclude that in the clinical application of gene therapy, it could be better to abandon the term cure, whereas more modest and specified definitions of cure are required in the context of health resource allocation decisions and decisions on research funding. (shrink)

This book examines the content of a complex perfectionism beyond absolute, abstract, negative and minimalist readings.It relates to issues in perfection, interpretation, virtue, narrative lives, flourishing, valuable activities, and environmentalism.