It may soon become possible not just to replace, but to re-grow healthy tissues after injury or disease, because of innovations in the field of Regenerative Medicine. One particularly promising innovation is a regenerative valve implant to treat people with heart valve disease. These implants are fabricated from so-called ‘smart’, ‘lifelike’ materials. Implanted inside a heart, these implants stimulate re-growth of a healthy, living heart valve. While the technological development advances, the ethical implications of this new technology are still unclear (...) and a clear conceptual understanding of the notions ‘smart' and ‘lifelike' is currently lacking. In this paper, we explore the conceptual and ethical implications of the development of smart lifelike materials for the design of regenerative implants, by analysing heart valve implants as a showcase. In our conceptual analysis, we show that the materials are considered ‘smart’ because they can communicate with human tissues, and ‘lifelike’ because they are structurally similar to these tissues. This shows that regenerative valve implants become intimately integrated in the living tissues of the human body. As such, they manifest the ontological entanglement of body and technology. In our ethical analysis, we argue this is ethically significant in at least two ways: It exacerbates the irreversibility of the implantation procedure, and it might affect the embodied experience of the implant recipient. With our conceptual and ethical analysis, we aim to contribute to responsible development of smart lifelike materials and regenerative implants. (shrink)

“Bodily autonomy” has received significant attention in bioethics, medical ethics, and medical law in terms of the general inviolability of a patient’s bodily sovereignty and the rights of patients to make choices (e.g., reproductive choices) that concern their own body. However, the role of the body in terms of how it can or does contribute to a patient’s capacity for, or exercises of their autonomy in clinical decision-making situations has not been explicitly addressed. The approach to autonomy in this paper (...) is aligned with traditional theories that conceive autonomy in terms of an individual’s capacities for, and exercises of rational reflection. However, at the same time, this paper extends these accounts by arguing that autonomy is, in part, embodied. Specifically, by drawing on phenomenological conceptions of the experience of autonomy, we argue that, in principle, the body is a necessary component of the capacity for autonomy. Secondly, through the presentation of two different cases, we highlight ways in which a patient’s body can contribute to the autonomy of treatment choices. Ultimately, we hope to encourage others to explore additional conditions under which a concept of embodied autonomy should be employed in medical decision making, how its underlying principles might be operationalised in clinical situations, and its consequences for approaches to patient autonomy in healthcare practice, policy, and law. (shrink)

Maurice Merleau-Ponty’s work draws our attention to how the body is always our way of having a world and never merely a thing in the world. Our conception of the body must take account of our cultures, our historically located sciences, and our interpersonal relations and cannot reduce the body to a biological given. Normality, Abnormality, and Pathology in Merleau-Ponty takes up Merleau-Ponty’s phenomenology of the body to explore the ideas of normality, abnormality, and pathology. Focusing on the lived experiences (...) of various styles of embodiment, the book challenges our usual conceptions of normality and abnormality and shows how seemingly objective scientific research, such as the study of pathological symptoms, is inadequate to the phenomena it purports to comprehend. The book offers new insights into our understandings of health and illness, ability and disability, and the scientific and cultural practices that both enable and limit our capacity for diverse experiences. (shrink)

Aims and Objectives. This article uses the concept of embodiment to demonstrate a conceptual approach to applied phenomenology. -/- Background. Traditionally, qualitative researchers and healthcare professionals have been taught phenomenological methods, such as the epoché, reduction, or bracketing. These methods are typically construed as a way of avoiding biases so that one may attend to the phenomena in an open and unprejudiced way. However, it has also been argued that qualitative researchers and healthcare professionals can benefit from phenomenology’s well-articulated theoretical (...) framework, which consists of core concepts, such as selfhood, empathy, temporality, spatiality, affectivity, and embodiment. -/- Design. This is a discursive article that demonstrates a conceptual approach to applied phenomenology. -/- Method. To outline and explain this approach to applied phenomenology, the Discussion section walks the reader through four stages of phenomenology, which progress incrementally from the most theoretical to the most practical. -/- Discussion. Part one introduces the philosophical concept of embodiment, which can be applied broadly to any human subject. Part two shows how philosophically trained phenomenologists use the concept of embodiment to describe general features of illness and disability. Part three illustrates how the phenomenological concept of embodiment can inform empirical qualitative studies and reflects on the challenges of integrating philosophy and qualitative research. Part four turns to phenomenology’s application in clinical practice and outlines a workshop model that guides clinicians through the process of using phenomenological concepts to better understand patient experience. -/- Conclusion and Relevance to Clinical Practice. A conceptual approach to applied phenomenology provides a valuable alternative to traditional methodological approaches. Phenomenological concepts provide a foundation for better understanding patient experience in both qualitative health research and clinical practice, and therefore provide resources for enhancing patient care. (shrink)

In this paper, I argue that Jonathan Glover, a prominent advocate of human genetic engineering, relies on a limited naturalistic account of normal human function in his defense of genetic engineering as a means of decreasing future instances of disability. I show that his concept of disability and the normative argument informed by it in his Choosing Children: Genes, Disability, and Design fails to incorporate the phenomenological dimension of embodiment, and that this dimension should be included in any account of (...) disability and human flourishing. Such inclusion, however, requires us to consider seriously the counterintuitive view that racial minorities are constitutionally disabled in racist societies. (shrink)

After describing the disorder of psychopathy, I examine the theories and the evidence concerning the psychopaths’ deficient moral capacities. I first examine whether or not psychopaths can pass tests of moral knowledge. Most of the evidence suggests that they can. If there is a lack of moral understanding, then it has to be due to an incapacity that affects not their declarative knowledge of moral norms, but their deeper understanding of them. I then examine two suggestions: it is their deficient (...) practical reason or their stunted emotions that are at fault. The evidence supports both explanations. I conclude with an overview of the debate concerning whether they are morally or legally responsible for their actions. (shrink)

A key topic within the field of the phenomenology of medicine has been the relationship between body and self in illness, including discussions about the otherness and mineness of the body. The aim of this article is to distinguish between different meanings of bodily otherness and mineness in illness with reference to the interpretation of the body as “saturated phenomenon,” inspired by the phenomenology of Jean-Luc Marion. With the help of Marion’s ideas it is possible to distinguish between two meanings (...) of bodily otherness and of mineness (objective and non-objective forms). These distinctions support and elaborate on ideas already found in the phenomenology of medicine and offer further insights into the nature of the experience of illness. (shrink)

The diagnosis of idiopathic short stature refers to children who are considerably shorter than average without any identified medical reason. The US Food and Drug Administration authorised marketing of recombinant human growth hormone for ISS in 2003, while the European Medicines Agency refused it in 2007. This paper examines the arguments for these decisions as detailed in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called ‘What’s the problem represented to be’. It argues (...) that the FDA presents its approval as an argument for equity of access to the treatment, describing short stature as a potential disadvantage, and assuming that height normalisation is a clinically meaningful result. The EMA, instead, refuses marketing authorisation with an argument that there is an imbalance of risks and benefits, describing ISS as a healthy condition, and arguing that hGH should provide some psychosocial and/or quality of life benefits to children with ISS other than height gain. This paper then discusses how these arguments could be read through different models of disability, particularly through the medical model of disability and the relational, experiential, and cultural understandings of disability. (shrink)

Despite the growing literature on childhood obesity and lifestyle intervention programmes focusing on weight loss, few studies have examined young persons’ experiences of being identified as candidates for such programmes and of participating in them. This paper does so. Juxtaposing insights from phenomenology with an approach inspired by Foucault, the paper shows how teenage girls’ bodily self-perception and bodily self-awareness are shaped in intercorporeal assemblages comprising other people and specific features or elements of the lifestyle programme.Inspired by van Manen’s hermeneutic-phenomenological (...) approach, with its point of departure in lived experience, this paper draws on interviews with Norwegian teenage girls participating in the same lifestyle programme and identifies three core thematic aspects of the girls’ experiences: being identified as a candidate for a lifestyle programme and not wanting this; negotiating the lack of weight loss and the scales; and bodily situated agency – feeling good and being able. Permeating all three themes are two central, interrelated phenomena: agency and resistance. Furthermore, the paper shows how a combination of Foucauldian insights and a phenomenological understanding of intercorporeality can help to shed light on the power, affective, material and temporal dimensions of dys-appearance (i.e., when one’s body appears as bad or wrong), as well as those of eu-appearance (i.e., when one’s body appears as healthy or strong), and thus contribute to the understanding of the girls’ narrated lived experiences.On the basis of these findings, we argue that weight-related treatment goals are not necessarily compatible with the strengthening of adolescents’ body images and self-esteem. However, whilst being obliged to attend to their bodies while in the programme, the girls also encountered unexpected, positive bodily feelings and experiences. Such events, we suggest, offer a means of resisting the more troubling dys-appearing bodily situations our participants described so powerfully. (shrink)

In this paper I will try to systematically lay out and describe the multiple dimensions of the embodied experience of illness, which until recently has been the main focus within the field of the phenomenology of medicine. In order to do this, I will turn to analysis of the nature of embodiment in Husserl’s phenomenology. I will argue that based on Husserl’s phenomenology of the body, one can distinguish four ways of experiencing one’s body, or four dimensions of embodiment. I (...) will distinguish between experience of one’s body as 1) a bearer of sensations ; 2) a seat of free movement, characterized by the faculty of “I can” ; 3) a material thing in a causal relationship with the material world ; 4) a material thing embedded in a social context. I will then apply the proposed classification of dimensions of embodiment to the experience of illness, focusing on the various ways these dimensions have been used within the phenomenology of medicine. This serves two purposes. Firstly, it provides a framework for classification of the existing interpretations of the experience of illness; secondly, it opens up a way for a comprehensive analysis of the experience of illness which includes both individual and social aspects of embodiment as well as their mutual intertwining. (shrink)

Since its inception, phenomenological philosophy has engaged with empirical data of lived experiences. Recently, phenomenological philosophy itself has branched out into performing systematic qualitative research, resulting in a heterogeneous field of qualitative phenomenological philosophy. By introducing and outlining the research approach of ‘Qualitative Critical Phenomenology’ (QCP), this paper shows how one may conduct systemic qualitative research to lived experiences with an explicit phenomenological philosophical aim. In building on insights from various approaches within critical phenomenology, we not only give a stepwise (...) explication of how to do QCP, we also discuss how we reflectively engage with lived experience as a research object and how key phenomenological themes – i.e. varieties of pre-/reflectivity and the phenomenological reduction – matter for designing and conducting a QCP inquiry. As such, we contribute to discussions on critical phenomenology – i.e. why it matters – but also to debates on how qualitative critical phenomenology may provide a critical lens to prevailing socio-cultural norms and their constitutive force in co-shaping perception and experience. (shrink)

This paper delves into the complex and conflicting relationship between the body-subject and body-object, as well as the self and the other, within the context of anorexia nervosa. Within the field of phenomenology of medicine and health, the emphasis tends to be on the dimension of the lived body, with limited attention given to the physical dimension of the body. Recognizing the work of scholars who have acknowledged this oversight and made progress in addressing it, this paper aims to further (...) unify the two bodily dimensions of the lived body and the physical body by drawing primarily on Husserl’s phenomenology of constitution and intersubjectivity. The central argument put forth is that in the case of anorexia nervosa, confronted with the inherent split between these dimensions and the conflicting relationship between the self and other, it is crucial to adhere to the constitutive principle of irreducibility of subjectivity. Moreover, there is a need to promote the constitutive interplay between the two dimensions and accentuate the constitutive dialectic structure of the self and other. Through these insights, the paper offers potential avenues for understanding and addressing the lived experiences of individuals battling anorexia nervosa. (shrink)

Starting from a phenomenological understanding of the body, this article discusses the understanding of body awareness in health and illness. I question the common way to understand our relationship to our bodies in terms of subjective and objective perspectives on it, and furthermore, how this opposition has been used in the phenomenological literature to outline an understanding of health and illness as states where the body stays unnoticed versus resurfaces to our attention as dysfunctional. Using examples from an ongoing interview (...) study, I argue for an understanding of the dialectical interplay between body and world in our awareness, and how it can be understood as an approaching or distancing movement to body and world. I furthermore describe how the interplay between body and world effects and is effected by our existence in health and illness. Finally, I suggest what implications this new way of understanding the lived body has for health care practice in general, and for the development of a person‐centred care in particular. I suggest that we leave the dichotomous understanding of subjective and objective perspectives behind, and start to investigate how we move between different kinds of body awareness in health and illness. Illness, as a situation where that which has been taken for granted becomes questioned, can be said to be characterized by mistrust, and by a distancing from world and body. It is thus of importance for caregivers to provide the time, space and trusting atmosphere needed in order to make the approaching movement possible. (shrink)

During the last few decades, many thinkers have advocated for the importance of the phenomenological approach in developing the understanding of the lived experience of illness. In their attempts, they have referred to ideas found in the history of phenomenology, most notably, in the works of Edmund Husserl, Martin Heidegger, Maurice Merleau-Ponty and Jean-Paul Sartre. The aim of this paper is to sketch out an interpretation of illness based on a yet unexplored conceptual framework of the phenomenology of French thinker (...) Jean-Luc Marion. Focusing on concepts of the saturated phenomenon and flesh, the paper develops an interpretation of illness as the saturated phenomenon, which highlights a variety of dimensions of illness already elaborated within the phenomenology of medicine, such as the affective dimension of illness, the disruptive dimension of illness, the transformed perception of the self in illness, mineness of flesh in illness and the inexpressible and hermeneutical dimension of illness. In addition to that, the paper explores some of the consequences the proposed interpretation of illness offers regarding the nature of illness and health. It is argued that illness in its essence is very similar to the experience of other saturated phenomena, suggesting that the difference between them does not lie within the character of the affective givenness, but rather within the dynamic relationship between the affective givenness and its conceptualization. It is also shown that the experience of health is compatible with the experience of saturation and thus is not limited to the tacit and harmonious background state. (shrink)

In recent years, facial difference is increasingly on the public and academic agenda. This is evidenced by the growing public presence of individuals with an atypical face, and the simultaneous emergence of research investigating the issues associated with facial variance. The scholarship on facial difference approaches this topic either through a medical and rehabilitation perspective, or a psycho-social one. However, having a different face also encompasses an embodied dimension. In this paper, we explore this embodied dimension by interpreting the stories (...) of individuals with facial limb absence against the background of phenomenological theories of the body, illness and disability. Our findings suggest that the atypical face disrupts these individuals’ engagement with everyday projects when it gives rise to disruptive perceptions, sensations, and observations. The face then ceases to be the absent background to perception, and becomes foregrounded in awareness. The disruptions evoked by facial difference call for adjustments: as they come to terms with their altered face, the participants in our study gradually develop various new bodily habits that re-establish their face’s absence, or relate to its disruptive presence. It is through these emergent habits that facial difference comes to be embodied. By analyzing the everyday experiences of individuals with facial limb absence, this article provides a much-needed exploration of the embodied aspects of facial difference. It also exemplifies how a phenomenological account of illness and disability can do justice both to the impairments and appearance issues associated with atypical embodiment. (shrink)

Although scars never disappear completely, in time most people will basically get used to them. In this paper I explore what it means to habituate to scars against the background of the phenomenological concept of incorporation. In phenomenology the body as Leib or corps vécu functions as a transcendental condition for world disclosure. Because of this transcendental reasoning, phenomenology prioritizes a form of embodied subjectivity that is virtually dis-embodied. Endowing meaning to one’s world through getting engaged in actions and projects (...) is most successful indeed when one’s body is “absent,” “transparent,” or, at least, if it is not in the center of one’s attention. This taken-for-granted nature can be disturbed by discomfort, disability, and disfigurement. Incorporation, so I explain, aims at maintaining or restoring the body’s taken-for-grantedness. My analysis of the case of a woman who successfully habituated to her mastectomy scar demonstrates, however, that habituation to a perceptible scar can only be understood partly in terms of incorporation. Next to a decrease of explicit attention for the scar and the discomfort it produces, the scar should also stop being a sign that refers to something else than itself. This is only possible, I argue, by taking the body’s materiality seriously, rather than it being wiped out as a result of transcendental reasoning. (shrink)

Feminist technoscience and feminist phenomenology have seldom been brought into dialogue with each other, despite them sharing concerns with subjectivity and normativity, and despite both of them moving away from sharp subject-object distinctions. This is unfortunate. This article argues that, while differences between these strands need to be acknowledged, such differences should be put to productive use. The article discusses a case of school bullying, and suggests that bringing these analytic perspectives together enables and sharpens examinations of the role of (...) subjectification and subject positions for subjectivity in the phenomenological sense; affectivity within material-discursive entanglements and constellations of humans and things, and as connecting the body, things and the world in specific ways; and normativity as enacted, lived and embedded in perception. (shrink)

When elderly people are ideating on manners to end their lives, because they feel life is over and no longer worth living, it is important to understand their lived experiences, thoughts and behaviour in order to appropriately align care, support and policy to the needs of these people. In the literature, the wish to die in elderly people is often understood from a medical, psychopathological paradigm, referred to as cognitive impairment, depressive disorder, pathological bereavement, and suicidality. In this paper, we (...) evaluate this dominant paradigm by considering three serious limitations, namely: (1) the risk of epistemic transformation; (2) the risk of reduction; and (3) the risk of obscuring the social and cultural embeddedness. Drawing on insights from our empirical–phenomenological research on the issue of elderly and the self-chosen death, this paper argues for a phenomenological perspective to counteract the medicalisation of death wishes in elderly people. (shrink)