The aim of this article is to explore nuances within the field of bodily self-awareness. My starting-point is phenomenological. I focus on how the subject experiences her or his body, i.e. how the body stands forth to the subject. I build on the phenomenologist Drew Leder’s distinction between bodily dis-appearance and dys-appearance. In bodily dis-appearance, I am only prereflectively aware of my body. My body is not a thematic object of my experience. Bodily dys-appearance takes place when the body appears (...) to me as “ill” or “bad.” This is often the case when I experience pain or illness. Here, I will examine three versions of bodily dys-appearance. Whereas many phenomenological studies have explored cases of bodily dys-appearance, few studies have focused on the opposite of bodily dys-appearance, i.e. on bodily modes of being where the body appears to the subject as something good, easy or well. This is done in this article. When the body stands forth as good, easy or well to the subject, I suggest that the body eu-appears to this person. The analysis of eu-appearance shows that the subject can attend to her or his body as something positive and that this attention need not result in discomfort or alienation. Eu-appearance can take place in physical exercise, in sexual pleasure and in some cases of wanted pregnancies. I also discuss, briefly, the case of masochism. (shrink)

By drawing on Jean-Luc Nancy’s philosophy of ontological relationality, this article explores what it means to be a ‘we’ in breast cancer. What are the characteristics—the extent and diversity—of couples’ relationally lived experiences of bodily changes in breast cancer? Through analyzing duo interviews with diagnosed women and their partners, four ways of sharing an embodied life are identified. While ‘being different together’, partners have different, albeit connected kinds of experiences of breast cancer. While ‘being there for you’, partners take care (...) of each other in mutually dependent ways. While ‘being reconnected to you’, partners relate to each other through intimacy and sexuality. While ‘being like you’, partners synchronize their embodied daily lives to one another, sometimes up to the point that the self cannot be distinguished from the other anymore. These ways reveal that being a ‘we’ involves complex affective, bodily encounters in which the many fault lines that both separate partners into individual selves and join them together as a unity are continuously reshaped and negotiated. Being a ‘we’ may be understood as something we have to do. Therefore, in being true to the legacy of Nancy, we argue at the end of this article for a sensible praxis of sharing a life and body, particularly in breast cancer. (shrink)

_Phenomenological insights into health issues relating to bodily self-experience, normality and deviance, self-alienation, and objectification._.

The article examines how some culturally shared and corporeally enacted beliefs and norms about sexed and racialized embodiment can form embodied agency, and this with the aid of the concepts of incorporation and excorporation. It discusses how the phenomenological concept of excorporation can help us examine painful experiences of how one's lived body breaks in the encounter with others. The article also examines how a continuous excorporation can result in bodily alienation, and what embodied resistance can mean when one has (...) undergone or undergoes excorporation. Elaborating on the work of, among others, Maurice Merleau-Ponty, Martin Heidegger, Drew Leder, and Sarah Ahmed, I discuss incorporation and excorporation of beliefs and norms regarding sexual difference, such as beliefs and norms regarding female and male embodiment, through a reading of Jeffrey Eugenides' novel Middlesex. I also suggest that it is useful to understand the postcolonial scholar Frantz Fanon's narrative of how he could not but attend to his own skin color while living in France in the 1940s and 1950s, in terms of excorporation. Whereas these are different narratives in many ways, I regard them as helpful for clarifying what excorporation implies and what analytic work this concept can enable. (shrink)

The influence of pervasive cultural norms on people’s actions constitutes a longstanding problem for autonomy theory. On the one hand, such norms often seem to elude the kind of reflection that autonomous agency requires. On the other hand, they are hardly entirely beyond the pale of autonomy: people do sometimes reflect critically on them and resist them. This paper draws on phenomenological accounts of embodiment in order to reconcile these observations. We suggest that pervasive cultural norms exert a strong and (...) elusive, but occasionally resistible, influence because they are incorporated – they operate on the largely pre-reflective bodily level of human existence. As an illustration we discuss parental decisions about surgery for children born with unclear sex, decisions permeated by deeply entrenched norms about sexual difference and genital appearance. (shrink)

Since John Locke, regnant conceptions of personhood in Western philosophy have focused on individual capabilities for complex forms of consciousness that involve cognition such as the capability to remember past events and one’s own past actions, to think about and identify oneself as oneself, and/or to reason. Conceptions of personhood such as Locke's qualify as cognition-oriented, and they often fail to acknowledge the role of embodiment for personhood. This article offers an alternative conception of personhood from within the tradition of (...) phenomenology of the body. The article presents a phenomenological analysis of joint musical activity in dementia care and outlines an intercorporeal conception of personhood based on this analysis. It also provides a philosophical basis for the idea that others can hold us in personhood, and it questions a strict one-body-one-person logic that has pertained in much personhood debate. (shrink)

Death concept, death definition, death criterion and death test pluralism has been described by some as a problematic approach. Others have claimed it to be a promising way forward within modern pluralistic societies. This article describes the New Jersey Death Definition Law and the Japanese Transplantation Law. Both of these laws allow for more than one death concept within a single legal system. The article discusses a philosophical basis for these laws starting from John Rawls' understanding of comprehensive doctrines, reasonable (...) pluralism and overlapping consensus. It argues for the view that a certain legal pluralism in areas of disputed metaphysical, philosophical and/or religious questions should be allowed, as long as the disputed questions concern the individual and the resulting policy, law or acts based on the policy/law, do not harm the lives of other individuals to an intolerable extent. However, while this death concept, death definition, death criterion and death test pluralism solves some problems, it creates others. (shrink)

Free and informed choice is an oft-acknowledged ethical basis for living kidney donation, including parental living kidney donation. The extent to which choice is present in parental living kidney donation has, however, been questioned. Since parents can be expected to have strong emotional bonds to their children, it has been asked whether these bonds make parents unable to say no to this donation. This article combines a narrative analysis of parents’ stories of living kidney donation with a philosophical discussion of (...) conditions for parental decision-making. Previous research has shown that parents often conclude that it is “natural” to donate. Our study shows that this naturalness needs to be understood as part of a story where parental living kidney donation is regarded as natural and as a matter of non-choice. Our study also highlights the presence of a parenthood moral imperative of always putting one’s child’s needs before one’s own. On the basis of these results, we discuss conditions for decision-making in the context of parental LKD. We argue that the presence of a parenthood moral imperative can matter with regard to the decision-making process when parents consider whether to volunteer as living kidney donors, but that it need not hamper choice. We emphasise the need for exploring relational and situational factors in order to understand parental decision-making in the context of parental LKD. (shrink)

What is the impact of genetics and genomics on issues of identity and what do we mean when we speak of identity? This paper explores how certain concepts of identity used in philosophy can be brought together in a multi-layered concept of identity. It discusses the concepts of numerical, qualitative, personal and genetic identity-over-time as well as rival concepts of genomic identity-over-time. These are all understood as layers in the multi-layered concept of identity. Furthermore, the paper makes it clear that (...) our understanding of genomic identity and the importance attached to genomic sameness-over-time matters for the ethical questions raised by certain new gene technologies. (shrink)

In vitro fertilization with reception of oocytes from partners allows lesbian mothers to share biological motherhood. The gestational mother receives an egg from her partner who becomes the genetic mother. This article examines the ethics of IVF with ROPA with a focus on the welfare of the woman and the resulting child, on whether ROPA qualifies as a “legitimate” medical therapy that falls within the goals of medicine, and on the meaning and value attributed to a biologically shared bond between (...) parents and child. We also contrast IVF with ROPA with egg donor IVF for heterosexual couples and intrafamilial live uterus transplantation with IVF, and show how Swedish legislation makes certain ways of sharing biological bonds out of place. In Sweden, IVF with ROPA is illegal, egg donor IVF for heterosexual couples is allowed and practiced as is sperm donor IVF for lesbians, and live uterus transplantation is performed within a research project. But is ROPA really ethically more problematic than these other cases? The article argues that IVF with ROPA gives rise to fewer ethical questions than does live uterus transplantation with IVF and, in some cases, egg donor IVF. (shrink)

Two ethical frameworks have dominated the discussion of organ donation for long: that of property rights and that of gift-giving. However, recent years have seen a drastic rise in the number of philosophical analyses of the meaning of giving and generosity, which has been mirrored in ethical debates on organ donation and in critical sociological, anthropological and ethnological work on the gift metaphor in this context. In order to capture the flourishing of this field, this article distinguishes between four frameworks (...) for thinking about bodily exchanges in medicine: those of property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. These frameworks represent four different ways of making sense of donation of organs as well as tissue, gametes and blood, draw on different conceptions of the relations between the self and the other, and bring out different ethical issues as core ones. The article presents these frameworks, argues that all of them run into difficulties when trying to make sense of reciprocity and relational interdependence in donation, and shows how the three gift-giving frameworks (of heroism, sacrifice and aporia) hang together in a critical discussion about what is at stake in organ donation. It also presents and argues in favour of an alternative intercorporeal framework of giving-through-sharing that more thoroughly explicates the gift metaphor in the context of donation, and offers tools for making sense of relational dimensions of live and post mortem donations. (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, as well as those of eu-appearance, 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)

Much discussion of decision-making processes in medicine has been patient-centred. It has been assumed that there is, most often, one patient. Less attention has been given to shared decision-making processes where two or more patients are involved. This article aims to contribute to this special area. What conditions need to be met if decision-making can be said to be shared? What is a shared decision-making process and what is a shared autonomous decision-making process? Why make the distinction? Examples are drawn (...) from the area of new reproductive medicine and clinical genetics. Possible gender-differences in shared decision-making are discussed. (shrink)

Enhancement of autonomous choice may be considered as an important reason for facilitating the use of genetic tests such as preimplantation genetic diagnosis. The principle of respect for autonomy is a crucial component not only of Western liberal traditions but also of Western bioethics. This is especially so in bioethical discussions and analyses of clinical encounters within medicine. On the basis of an analysis of qualitative research interviews performed with British, Italian and Swedish geneticists and gynaecologists on ethical aspects of (...) preimplantation genetic diagnosis, the plausibility of the notion of autonomy within reproductive medicine is discussed. The analysis of interviews indicates not only that there is a gap between theoretical discussions and concrete practice, but also that an increase in choice — paradoxically — can hamper couples' choice. (shrink)

With pre-implantation genetic diagnosis, genetic testing and selective transfer of embryos is possible. In the future, germ-line gene therapy applied to embryos before implantation, in order to introduce missing genes or replace mutant ones, may be possible. The objective of this dissertation is to analyse moral aspects of these technologies, as described by eighteen British, Italian and Swedish gynaecologists and geneticists. The objective is systematised into three parts: research interviews and qualitative analysis, philosophical analysis, and elaboration of a framework that (...) supports the combination of analytic methods. PGD was described as positive since it enabled some couples at risk for a genetic disease to have a child without the disease. PGD was described as in different senses ‘better’ than methods for prenatal diagnosis and selective termination of pregnancy. It was also described as positive since it provided couples at risk with one more option, even if it did not result in the birth of a healthy child. However, interviewees were concerned about the difficulty of defining and evaluating genetic disease. They were also concerned about patients’ choices, and about exaggerated use or misuse. Whereas PGD gave rise to ambivalence in terms of how to understand, describe and evaluate it, GLGT was often described as unrealistic or undesirable. The results of the qualitative analysis are used in a philosophical analysis of the concepts of choice, autonomous choice, ambivalence, trust and ambivalence in trust relations. A set of distinct characteristics of each concept are elaborated. The results of the philosophical analysis are used in the discussion of the results of the qualitative analysis. The study shows that the technologies imply both ‘new’ ways to perform ‘old’ medical practices and ‘new’ practices. Old moral questions are reformulated. New moral questions are added. Against the background of this, the concept of genetic identity is discussed. Key words: empirical ethics, pre-implantation genetic diagnosis, germ-line gene therapy, qualitative research, philosophical analysis, medical progress, genetic disease, choice, autonomous choice, ambivalence, trust, genetic identity. (shrink)

Emotionally-related live organ donation is different from almost all other medical treatments in that a family member or, in some countries, a friend contributes with an organ or parts of an organ to the recipient. Furthermore, there is a long-acknowledged but not well-understood gender-imbalance in emotionally-related live kidney donation. This article argues for the benefit of the concept of just love as an analytic tool in the analysis of emotionally-related live organ donation where the potential donor(s) and the recipient are (...) engaged in a love relation. The concept of just love is helpful in the analysis of these live organ donations even if no statistical gender-imbalance prevails. It is particularly helpful, however, in the analysis of the gender-imbalance in live kidney donations if these donations are seen as a specific kind of care-work, if care-work is experienced as a labour one should perform out of love and if women still experience stronger pressures to engage in care-work than do men. The aim of the article is to present arguments for the need of just love as an analytic tool in the analysis of emotionally-related live organ donation where the potential donor(s) and the recipient are engaged in a love relation. The aim is also to elaborate two criteria that need to be met in order for love to qualify as just and to highlight certain clinical implications. (shrink)

Recent years have seen a rise in the number of sociological, anthropological, and ethnological works on the gift metaphor in organ donation contexts, as well as in the number of philosophical and theological analyses of giving and generosity, which has been mirrored in the ethical debate on organ donation. In order to capture the breadth of this field, four frameworks for thinking about bodily exchanges in medicine have been distinguished: property rights, heroic gift-giving, sacrifice, and gift-giving as aporia. Unfortunately, they (...) all run into difficulties in terms of both making sense of the relational dimensions of postmortem and live organ donations and being normatively adequate in the sense of shedding light and providing guidance on ethical concerns when body parts are donated. For this reason, this article presents a phenomenological framework of giving-through-sharing, based on Maurice Merleau-Ponty’s philosophy. This framework makes sense of relational dimensions of postmortem and live organ donation. It also sheds light on three highly debated concerns in organ donation ethics: indebtedness on the part of recipients, the fact that some live donors do not experience donation as a matter of choice, and the potentially painful experience of donors’ relatives, who need to make decisions about postmortem organ donation at a time of bereavement. It can indirectly support what may be called a normalization of bodily exchanges in medicine. (shrink)

The article’s aim is to explore human hand allograft recipients’ postoperative experience of disownership and their gradual experience of their new hand as theirs, with the aid of the work of the French phenomenologist Maurice Merleau-Ponty. Many have used a Merleau-Pontinian perspective in the analysis of embodiment. Far fewer have used it in medico-ethical analysis. Drew Leder’s phenomenologically based ethics of organ donation and organ sale is an exception to this tendency. The article’s second aim is to examine Leder’s phenomenologically (...) based ethics of organ donation and organ sale. Though I find parts of Leder’s approach promising, I also elaborate a line of reasoning that draws on Merleau-Ponty, that does allow us to argue for certain kinds of organ donation and against organ sale—and that avoids some of the problems with Leder’s approach. This alternative route builds on the concept of the integrity of the body-subject. (shrink)

Our approach to global bioethics will depend, among other things, on how we answer the questions whether global bioethics is possible and whether it, if it is possible, is desirable. Our approach to global bioethics will also vary depending on whether we believe that the required bioethical deliberation should take as its principal point of departure that which we have in common or that which we have in common and that on which we differ. The aim of this article is (...) to elaborate a theoretical underpinning for a bioethics that acknowledges the diversity of traditions and experiences without leading to relativism. The theoretical underpinning will be elaborated through an exploration of the concepts of sameness, otherness, self and other, and through a discussion of the conditions for understanding and critical reflection. Furthermore, the article discusses whether the principle of respect for the other as both the same and different can function as the normative core of this global bioethics. The article also discusses the New Jersey Death Definition Law and the Japanese Transplantation Law. These laws are helpful in order to highlight possible implications of the principle of respect for the other as both the same and different. Both of these laws open the door to more than one concept of death within one and the same legal system. Both of them relate preference for a particular concept of death to religious and/or cultural beliefs. (shrink)

In 2014, the first child in the world was born after live uterus transplantation and IVF. Before and after this event, ethical aspects of UTx-IVF have been discussed in the medical and bioethical debate as well as, with varying intensity, in Swedish media and political fora. This article examines what comes to be identified as important ethical problems and solutions in the media debate of UTx-IVF in Sweden, showing specifically how problems, target groups, goals, benefits, risks and stakes are delineated (...) and positioned. It also demonstrates how specific assumptions, norms and values are expressed and used to underpin specific positions within this debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. This approach—which we label the Ethics of the Societal Entrenchment-approach, inspired by Koch and Stemerding —allows us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised. We also offer a critical discussion of whether some of these articulations and formations should be seen as ethically troubling, and if so, why. (shrink)

This article examines how people who are shorter than average make sense of their lived experience of embodiment. It offers a sociophenomenological analysis of 10 semistructured interviews conducted in the Netherlands, focusing on if, how, and why height matters to them. It draws theoretically on phenomenological discussions of lived and objective space, intercorporeality and norms about bodies. The analysis shows that height as a lived phenomenon is active engagement in space, coshapes habituated ways of behaving and is shaped by gendered (...) norms and beliefs about height. Based on this analysis, the article challenges what we label as the ‘problem-oriented approach’ to discussions about growth hormone treatment for children with idiopathic short stature. In this approach, possible psychosocial disadvantages or problems of short stature and quantifiable height become central to the ethical evaluation of growth hormone treatment at the expense of first-hand lived experiences of short stature and height as a lived phenomenon. Based on our sociophenomenological analysis, this paper argues that the rationale for giving growth hormone treatment should combine medical and psychological assessments with investigations of lived experiences of the child. Such an approach would allow considerations not only of possible risks or disadvantages of short stature but also of the actual ways in which the child makes sense of her or his height. (shrink)

The article’s aim is to explore human hand allograft recipients’ postoperative experience of disownership and their gradual experience of their new hand as theirs, with the aid of the work of the French phenomenologist Maurice Merleau-Ponty. Many have used a Merleau-Pontinian perspective in the analysis of embodiment. Far fewer have used it in medico-ethical analysis. Drew Leder’s phenomenologically based ethics of organ donation and organ sale is an exception to this tendency. The article’s second aim is to examine Leder’s phenomenologically (...) based ethics of organ donation and organ sale. Though I find parts of Leder’s approach promising, I also elaborate a line of reasoning that draws on Merleau-Ponty, that does allow us to argue for certain kinds of organ donation and against organ sale—and that avoids some of the problems with Leder’s approach. This alternative route builds on the concept of the integrity of the body-subject. (shrink)