This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and (...) patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (shrink)

The use of artificial intelligence in healthcare has led to debates about the role of human clinicians in the increasingly technological contexts of medicine. Some researchers have argued that AI will augment the capacities of physicians and increase their availability to provide empathy and other uniquely human forms of care to their patients. The human vulnerabilities experienced in the healthcare context raise the stakes of new technologies such as AI, and the human dimensions of AI in healthcare have particular significance (...) for research in the humanities. This article explains four key areas of concern relating to AI and the role that medical/health humanities research can play in addressing them: definition and regulation of “medical” versus “health” data and apps; social determinants of health; narrative medicine; and technological mediation of care. Issues include data privacy and trust, flawed datasets and algorithmic bias, racial discrimination, and the rhetoric of humanism and disability. Through a discussion of potential humanities contributions to these emerging intersections with AI, this article will suggest future scholarly directions for the field. (shrink)

This article explores the relationship between medicine’s history and its digital present through the lens of the physician-patient relationship. Today the rhetoric surrounding the introduction of new technologies into medicine tends to emphasize that technologies are disturbing relationships, and that the doctor-patient bond reflects a more ‘human’ era of medicine that should be preserved. Using historical studies of pre-modern and modern Western European medicine, this article shows that patient-physician relationships have always been shaped by material cultures. We discuss three activities (...) – recording, examining, and treating – in the light of their historical antecedents, and suggest that the notion of ‘human medicine’ is ever-changing: it consists of social attributions of skills to physicians that played out very differently over the course of history. (shrink)

Recent achievements in rehabilitative robotics modify essential parameters of the human body, such as motility. Exoskeletons used for persons with neurological impairments like spinal cord injury and stroke enter this category by rehabilitating and assisting damaged motor patterns, achievements thought impossible until not long ago. Unlike other examples leading to similar dysfunctions, such as diseases or tumors, the experience of an accident causing a spinal cord injury or the occurrence of a cerebrovascular accident is sudden and perceived as a radical (...) event. This often leads to deep consequences for one’s own body capacities. Exoskeletons attempt to alter this condition, contributing to forge a temporary abled body, although this currently happens in the restricted space of a clinic or a lab and under very controlled conditions for the predominance of users. Using qualitative empirical material from an ongoing study in sociology, including expert and narrative interviews as well as ethnographic visits in labs and centers that design and test exoskeletons, this article addresses the challenges and gains that people with stroke and spinal cord injury experience during their training with exoskeletons. The discussed cases contribute to reassess categories from the phenomenological paradigm, disability studies, and the role medical technologies play in contemporary body worlds. (shrink)

The genomics community has frequently compared advances in sequencing to advances in microelectronics. Lately there have been many claims, including by the National Human Genome Research Institute, that genomics is outpacing developments in computing as measured by Moore's law – the notion that computers double in processing capability per dollar spent every 18-24 months. Celebrations of the “$1000 genome” and other speed-related sequencing milestones might be dismissed as a distraction from genomics' slowness in delivering clinical breakthroughs, but the fact that (...) such celebrations have been persistently encouraged by the NHGRI reveals a great deal about the priorities and expectations of the American general public, the intended audience of the genomics–computing comparison. By delving into the history of speculative thinking about sequencing and computing, this article demonstrates just how much more receptive to high-risk/high-payoff ventures the NIH and the general public have become. The article also provides access to some of the roots and consequences of the association of “innovation talk” with genomics, and the means to look past that association to the less glamorous contributions of the NHGRI to building the field of genomics. (shrink)

Recently, a growing number of experts in artificial intelligence (AI) and medicine have be-gun to suggest that the use of AI systems, particularly machine learning (ML) systems, is likely to humanise the practice of medicine by substantially improving the quality of clinician-patient relationships. In this thesis, however, I argue that medical ML systems are more likely to negatively impact these relationships than to improve them. In particular, I argue that the use of medical ML systems is likely to comprise the (...) quality of trust, care, empathy, understanding, and communication between clinicians and patients. (shrink)