“Patient’s lived experience” Abstract This editorial presents a special issue gathering four contributions about the patient’s lived experience in the context of deep-brain stimulation. It aims at clarifying the meaning of such an experience and its scope for medical practice, the health system and its legal frame.

A non-ideal authenticity-based conceptualization of personal autonomy Abstract Respect for autonomy is a central moral principle in bioethics. The concept of autonomy can be construed in various ways. Under the non-ideal conceptualization proposed by Beauchamp and Childress, everyday choices of generally competent persons are autonomous to the extent that they are intentional and are made with understanding and without controlling influences. It is sometimes suggested that authenticity is important to personal autonomy, so that inauthenticity prevents otherwise autonomous persons from making autonomous decisions. Building from Beauchamp and Childress’s theory, this article develops a non-ideal authenticity-based conceptualization of personal autonomy. Factors that indicate inauthentic decision-making are explicated, and the full concept is defended from three expected objections. The theory is then tested on a paradigm case which has concerned theorists and practitioners for some time, namely the possible inauthenticity of anorexia nervosa patients’ decision-making. It is concluded that the theory seems to be fruitful in analyses of the degree of autonomy of patients’ decision-making, and that it succeeds in providing reliable action-guidance in practical contexts.

Deep Brain Stimulation (DBS) experiences: an ethnographic approach to their expression on the Internet forums Abstract This contribution aims at describing the experiences of Deep Brain Stimulation (DBS) as discussed on Internet forums. Since the 2000s, increasing attention has been paid to health practices associated with the use of the Internet, whether by medical professionals, public authorities or researchers in the social sciences. We know that Internet is used by patients with Parkinson’s disease, in order to discuss about their lived experiences. This contribution will present how these Internet users address the specific theme of DBS. We will examine how their use and the information sharing associated to it participate in the “shaping” of the lived experience of deep cerebral stimulation. This contribution will be introduced by an analysis of the state-of-the-art in sociological and anthropological international research on the topic of “Internet health”. On the basis of this analysis, it will propose a framework to describe and understand the various uses of the web that are made to give an account of the experience of stimulation. The existence of collective mobilizations in Parkinson’s disease, an old Internet experience and media oppositions concerning certain antiparkinsonian drugs, are conditions which push us to question these themes concerning DBS. This paper is a description, for the first time, of roles played by the users of these Internet forums and the different online activities produced about DBS subject. In an ethnographic perspective, we had to imagine that we were an Internet user seeking patient experiences with this surgical procedure to understand these interactions about DBS. The main goal of this contribution is to describe the attention paid by users for medical information about DBS in the identity and self-help process. The interest of such an approach is to open an anthropological reflection on the place and the role of the medical representations in the testimonies of experience of the disease or the treatments.

Enhancement, hybris, and solidarity: a critical analysis of Sandel’s The Case Against Perfection Abstract This article presents a critical analysis of the views of Michael Sandel on human enhancement in his book The Case Against Perfection (2007). Sandel argues that the use of biotechnologies for human enhancement is driven by a will to mastery or hybris, leading to an ‘explosion of responsibility’ and a disappearance of solidarity. I argue that Sandel is using a traditional concept of solidarity which leaves little room for individual differences and which is difficult to reconcile with the modern trend towards individual autonomy and cultural heterogeneity. With reference to the sociology of Giddens, I argue that the ‘explosion of responsibility’ can be considered an expression of the insecurity in modern society and the need for reflexivity in personal and social life. I argue that the need for reflexivity is a driving social and cultural force behind the interest in human enhancement, and that this trend can go together with a commitment to take care of the needs of others. I agree with Sandel that there is a risk that human enhancement may develop into ‘hybris’, particularly when enhancement is driven by scientism and a naturalist reduction of human values to neurological processes. Enhancement based on scientism will threaten solidarity defined by Honneth as an interactive relationship aimed at the mutual recognition of individual identities in relation to a shared value horizon. I will call for a reflective approach in which human enhancement technologies are explored in the context of a ‘system of reference’. Such a reflective approach will help to protect against the hybris of scientism and to maintain solidarity with vulnerable groups.

Τhe multiple temporalities of deep brain stimulation (DBS) in Greece Abstract This contribution intends to explore patients’ lived experience, with a focus on the temporal dimension. On the basis of a qualitative study that led me to interview persons with Parkinson’s disease (PD), caregivers, and medical professionals, I develop an empirical and philosophical investigation of the temporalities surrounding the implementation of deep brain stimulation (DBS) in Greece. I raise the issue of access to DBS medical care, and show how distinct temporalities are implied when the patients face such a matter: that of linear time, linked with the medical discourse, the bureaucratic time linked to administrative and financial hurdles in the implementation and maintenance of DBS, and the technological time of the body/technology fusion. I consider initially the impact of technology and health care settings on the lived experience of patients and the enactment of multiple bodies which are interrelated with the social world. I then expand my analysis in order to show that this experience cannot be a solipsistic one, or specific to one physician/patient relationship. It is fully socially shaped.

Learning from deep brain stimulation: the fallacy of techno-solutionism and the need for ‘regimes of care’ Abstract Deep brain stimulation (DBS) is an effective treatment for the debilitating motor symptoms of Parkinson’s disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not necessarily experienced the improvements in quality of life that would be expected, due in large part to what have been described as the ‘psychosocial’ impacts of DBS. The premise of this paper is that, in order to realise the full potential of DBS and similar interventions, clinical services need to be arranged in such a way that these psychosocial dimensions are recognised and managed. Our starting point is that the psychosocial effects of DBS ‘in the field’ present us with analytically-useful disruptions: they disturb and foreground deeply held assumptions relating to the individual, health and its treatment, and which in a crude form manifest as the myth of technological solutionism within health care. Drawing on scholarship in medical sociology and science and technology studies (STS), we argue that DBS brings to the fore the relational dimensions of personhood, and demonstrates the emotional and social turmoil that can result if the relational dimensions of personhood are ignored by clinical services. In light of this, we argue that DBS should be implemented within a regime of care. Drawing on ethnographic research of a paediatric DBS clinical service, we provide an example of a regime of care, and conclude by reflecting on what other DBS services might learn from this paediatric service.

Valuing biomarker diagnostics for dementia care: enhancing the reflection of patients, their care-givers and members of the wider public Abstract What is the value of an early (presymptomatic) diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now (future) patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to (future) patients. Based on seven focusgroups with (future) patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how they expect it to empower their capacity to (self-) care. They value it, for instance, with respect to whether it (a) explains experienced complaints, (b) allows to start a process of psychological acceptance and social adaptation to the expected degeneration, (c) contributes to dealing with anxieties (with respect to inheritable versions of dementia), (d) informs adequately about when to start preparing for the end of life, (d) informs the planning of a request for euthanasia, or (e) allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their (self-) care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about.

On illness, disease, and priority: a framework for more fruitful debates Abstract The distinction between ‘disease’ and ‘illness’ has played an important role in the debate between naturalism and normativism. Both employ these notions, yet disagree on whether to assign priority to ‘disease’ or ‘illness’. I argue that this discussion suffers from implicit differences in the underlying interpretations: While for naturalists the distinction between ‘disease’ and ‘illness’ is one between a descriptive and a prescriptive notion, for normativists it is one between cause and effect. This discrepancy is connected to different interpretations of priority, which also tend to be conflated in the debate. I disambiguate these different usages and develop a distinction between ‘disease’ and ‘illness’ that is theoretically neutral with regard to naturalism or normativism. Moreover, I propose a concept of heuristic priority that could serve as a common focus. This framework can avoid common confusions by providing a shared terminology and thereby help to make debates on disease-concepts more fruitful.

Getting what you desire: the normative significance of genetic relatedness in parent–child relationships Abstract People who are involuntarily childless need to use assisted reproductive technologies if they want to have a genetically related child. Yet, from an ethical point of view it is unclear to what extent assistance to satisfy this specific desire should be warranted. We first show that the subjectively felt harm due to the inability to satisfy this reproductive desire does not in itself entail the normative conclusion that it has to be met. In response, we evaluate the alternative view according to which the satisfaction of this desire is regarded as a way to meet one’s presumed intermediate need for parenthood. This view presupposes that parenthood is one of those general categories of experiences and activities that contribute an irreplaceable value to people’s lives, but the central difficulty is to find those characteristics that mark out parenthood as an irreplaceable constituent of a valuable life. We go on to argue, however, that even if one assumes that parenthood is such an irreplaceable constituent that makes life more valuable, this does not necessarily entail a moral duty to satisfy the desire for genetic parenthood. We conclude that there is a pro tanto obligation to help people conceive a genetically related child (if this is what they prefer), but that this can be outweighed by other moral considerations, such as safety and justice concerns.

Narrative methods for assessing “quality of life” in hand transplantation: five case studies with bioethical commentary Abstract Despite having paved the way for face, womb and penis transplants, hand transplantation today remains a small hybrid of reconstructive microsurgery and transplant immunology. An exceptionally limited patient population internationally (N < 200) complicates medical researchers’ efforts to parse outcomes “objectively.” Presumed functional and psychosocial benefits of gaining a transplant hand must be weighed in both patient decisions and bioethical discussions against the difficulty of adhering to post-transplant medications, the physical demands of hand transplant recovery on the patient, and the serious long-term health risks of immunosuppressant drugs. This paper relates five narratives of hand transplantation drawn from an oral history project to show how narrative methods can and should inform ethical evaluations and the clinical process of hand transplantation. The interviews with patients and their partners analyzed here lead us to suggest that qualitative accounts of patient experiences should be used to complement clinical case studies reported in medical journals and to help develop instruments to assess outcomes more systematically.