Kristin Zeiler

Why do ‘we’ perform surgery on newborn intersexed children? The phenomenology of the parental experience of having a child with intersex anatomies

Few parents-to-be consider that their child may be born with ambiguous sex. Still, parents of a newborn child with ambiguous sex are expected to make a far-reaching decision for the child: should the child be operated upon so that it has either female or male genitals? The aim of this article is to examine, phenomenologically, why parents decide to have their children undergo genital surgery when it is not necessary for the child’s physiological functions. Drawing on phenomenological work by Maurice Merleau-Ponty, Simone de Beauvoir and Sara Ahmed, we examine parents’ frustration when their child’s sex is ambiguous and their experiences of the practice of medical sex assignment. We also examine parental identity work when the child has been assigned a sex and the interaction between parents and medical professionals when parents make decisions regarding surgery on their child. Furthermore, we provide a critical perspective on the surgical practice.

A phenomenological analysis of bodily self-awareness in the experience of pain and pleasure: on dys-appearance and eu-appearance

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.

Moral tales of parental living kidney donation : a parenthood moral imperative and its relevance for decision making

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.

Just love in live organ donation

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.

Ethics and organ transfer: a Merleau-Pontean perspective.

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.

Complexities in reproductive choice: medical professionals' attitudes to and experiences of pre-implantation genetic diagnosis.

Studies have been made on attitudes to and experiences of women and men who have undergone pre-implantation genetic diagnosis (PGD), or who are regarded as potential users of this diagnostic method. Few studies have been conducted regarding the attitudes to and experiences of medical professionals as regards PGD. This paper reports on findings from such a qualitative study in which 18 semi-structured interviews were performed with geneticists and gynaecologists in Italy, Sweden and the UK. Interviewees emphasized, among other things, the importance of choice provision. Interviewees also told stories that indicated the many ways through which choice was feared to be hampered – or was hampered. A similar emphasis on the importance of PGD as one more alternative to choose between, for ‘high-risk’ couples, is not found in studies on the experiences, attitudes and views of potential, or actual, users of PGD.

Who Am I? When Do “I” Become Another? An Analytic Exploration of Identities, Sameness and Difference, Genes and Genomes

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.

Can you restore my 'own' body? : a phenomenological analysis of relational autonomy

Can You Restore My “Own” Body? A Phenomenological Analysis of Relational Autonomy Jenny Slatman, Kristin Zeiler & Ignaas Devisch To cite this article: Jenny Slatman, Kristin Zeiler & Ignaas Devisch (2016) Can You Restore My “Own” Body? A Phenomenological Analysis of Relational Autonomy, The American Journal of Bioethics, 16:8, 18-20, DOI: 10.1080/15265161.2016.1187219 To link to this article: http://dx.doi.org/10.1080/15265161.2016.1187219

Self and other in global bioethics: critical hermeneutics and the example of different death concepts

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.

A phenomenological approach to the ethics of transplantation medicine: sociality and sharing when living-with and dying-with others

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.