Implant ethics is defined here as the study of ethical aspects of the lasting introduction of technological devices into the human body. Whereas technological implants relieve us of some of the ethical problems connected with transplantation, other difficulties arise that are in need of careful analysis. A systematic approach to implant ethics is proposed. The major specific problems are identified as those concerning end of life issues (turning off devices), enhancement of human capabilities beyond normal levels, mental changes and personal (...) identity, and cultural effects. (shrink)

This article critical examines Gilbert and colleagues’ study (Gilbert et al. 2017) claims on how deep brain stimulation (DBS) as a treatment for Parkinson’s disease (PD) can influence people’s self-concept.

Brain-machine interfaces are a growing field of research and application. The increasing possibilities to connect the human brain to electronic devices and computer software can be put to use in medicine, the military, and entertainment. Concrete technologies include cochlear implants, Deep Brain Stimulation, neurofeedback and neuroprosthesis. The expectations for the near and further future are high, though it is difficult to separate hope from hype. The focus in this paper is on the effects that these new technologies may have on (...) our ‘symbolic order’—on the ways in which popular categories and concepts may change or be reinterpreted. First, the blurring distinction between man and machine and the idea of the cyborg are discussed. It is argued that the morally relevant difference is that between persons and non-persons, which does not necessarily coincide with the distinction between man and machine. The concept of the person remains useful. It may, however, become more difficult to assess the limits of the human body. Next, the distinction between body and mind is discussed. The mind is increasingly seen as a function of the brain, and thus understood in bodily and mechanical terms. This raises questions concerning concepts of free will and moral responsibility that may have far reaching consequences in the field of law, where some have argued for a revision of our criminal justice system, from retributivist to consequentialist. Even without such a (unlikely and unwarranted) revision occurring, brain-machine interactions raise many interesting questions regarding distribution and attribution of responsibility. (shrink)

Deep brain stimulation (DBS) has in some cases been associated with significant psychological effects and/or personality change. These effects occur sometimes as acute changes experienced intraoperatively or during the initial setting of the stimulator and sometimes as longer term progressive changes in the months following surgery. Sometimes they are the intended outcome of treatment, and in other cases they are an unintended side-effect. In all of these circumstances some patients and caregivers have described the psychological effects of DBS as frightening (...) or disconcerting. I trace the source of these negative reactions to the fear that stimulation-related psychological and personality changes represent a threat to personal identity and agency. This issue has implications both for philosophical theories of personal identity and agency and for clinical concerns. A narrative account of personal identity is developed to illuminate the nature of the threat to identity and agency DBS potentially poses, and to suggest steps that might be taken to mitigate and avoid these threats. (shrink)

Gilbert et al. have raised important questions about the empirical grounding of neuroethical analyses of the apparent phenomenon of Deep Brain Stimulation ‘causing’ personality changes. In this paper, we consider how to make neuroethical claims appropriately calibrated to existing evidence, and the role that philosophical neuroethics has to play in this enterprise of ‘evidence-based neuroethics’. In the first half of the paper, we begin by highlighting the challenges we face in investigating changes to PIAAAS following DBS, explaining how different trial (...) designs may be of different degrees of utility, depending on how changes to PIAAAS following DBS are manifested. In particular, we suggest that the trial designs Gilbert et al. call for may not be able to tell us whether or not DBS directly causes changes to personality. However, we suggest that this is not the most significant question about this phenomenon; the most significant question is whether these changes should matter morally, however they are caused. We go on to suggest that neuroethical analyses of novel neuro-interventions should be carried out in accordance with the levels of evidence hierarchy outlined by the Centre for Evidence-Based Medicine, and explain different ways in which neuroethical analyses of changes to PIAAAS can be evidence-based on this framework. In the second half of the paper, we explain how philosophical neuroethics can play an important role in contributing to mechanism-based reasoning about potential effects on PIAAAS following DBS, a form of evidence that is also incorporated into the CEBM levels of evidence hierarchy. (shrink)

In a recent article, Sabine Müller, Merlin Bittlinger, and Henrik Walter launch a sweeping attack against what they call the "personal identity debate" as it relates to patients treated with deep brain stimulation (DBS). In this critique offered by Müller et al., the so-called personal identity debate is said to: (a) be metaphysical in a problematic way, (b) constitute a threat to patients, and (c) use "vague" and "contradictory" statements from patients and their families as direct evidence for metaphysical theories. (...) In this response, I critically evaluate Müller et al.'s argument, with a special focus on these three just-mentioned aspects of their discussion. My conclusion is that Müller et al.'s overall argument is problematic. It overgeneralizes criticisms that may apply to some, but certainly not to all, contributions to what they call the personal identity-debate. Moreover, it rests on a problematic conception of what much of this debate is about. Nor is Müller et al.'s overall argument fair in its assessment of the methodology used by most participants in the debate. For these reasons, we should be skeptical of Müller et al.'s claim that the "personal identity debate" is a "threat to neurosurgical patients". (shrink)

One of the topics that often comes up in ethical discussions of deep brain stimulation (DBS) is the question of what impact DBS has, or might have, on the patient’s self. This is often understood as a question of whether DBS poses a “threat” to personal identity, which is typically understood as having to do with psychological and/or narrative continuity over time. In this article, we argue that the discussion of whether DBS is a “threat” to continuity over time is (...) too narrow. There are other questions concerning DBS and the self that are overlooked in discussions exclusively focusing on psychological and/or narrative continuity. For example, it is also important to investigate whether DBS might sometimes have a positive (e.g. a rehabilitating) effect on the patient’s self. To widen the discussion of DBS, so as to make it encompass a broader range of considerations that bear on DBS’s impact on the self, we identify six features of the commonly used concept of a person’s “true self”. We apply these six features to the relation between DBS and the self. And we end with a brief discussion of the role DBS might play in treating otherwise treatment-refractory anorexia nervosa. This further highlights the importance of discussing both continuity over time and the notion of the true self. (shrink)

Decisions about brain surgery pose existential challenges because they are often decisions about life or death, and sometimes about possible personality changes. Therefore they require rigorous neuroethical consideration. However, we doubt whether metaphysical interpretations of ambiguous statements of patients are useful for deriving ethical and legal conclusions. Particularly, we question the application of psychological theories of personal identity on neuroethical issues for several reasons. First, even the putative “standard view” on personal identity is contentious. Second, diverse accounts of personal identity (...) have been introduced into the neuroethical debate, which are incompatible. Third, the criteria for “diagnosing” the supposed changes in “identity” are ambiguous and indeterminate. Fourth, the metaphysical theories of personal identity imply highly questionable ethical and legal revisions, namely the denial of advance directives, particularly of Ulysses contracts, and, for patients with brain cancer, even therapeutic nihilism.We discuss three examples in which ideas from the personal identity debate in metaphysics are straightforwardly applied to discuss ethical issues of neurosurgery. We discuss revisions of the current medico-legal practice that have been proposed on grounds of psychological theories of personal identity. We argue that the established status quo in law and clinical practice is beneficial to the patients concerned. Furthermore, it is metaphysically neutral, which is an important principle of liberal, democratic, pluralistic societies.We recommend a pragmatic approach: empirical research on personality changes arising from brain disorders or interventions, comprehensive information about risks of personality changes, and advance directives, particularly Ulysses contracts. (shrink)

Although an invasive medical intervention, Deep Brain Stimulation (DBS) has been regarded as an efficient and safe treatment of Parkinson’s disease for the last 20 years. In terms of clinical ethics, it is worth asking whether the use of DBS may have unanticipated negative effects similar to those associated with other types of psychosurgery. Clinical studies of epileptic patients who have undergone an anterior temporal lobectomy have identified a range of side effects and complications in a number of domains: psychological, (...) behavioural, affective and social. In many cases, patients express difficulty adjusting from being chronically ill to their new status as ‘treated’ or ‘seizure free’. This postoperative response adjustment has been described in the literature on epilepsy as the ‘Burden of Normality’ (BoN) syndrome. Most of the discussion about DBS postoperative changes to self is focused on abnormal side effects caused by the intervention (ie, hypersexuality, hypomania, etc). By contrast, relatively little attention is paid to the idea that successfully ‘treated’ individuals might experience difficulties in adjusting to becoming ‘normal’. The purpose of this paper is (1) to articulate the postoperative DBS psychosocial adjustment process in terms of the BoN syndrome, (2) to address whether the BoN syndrome illustrates that DBS treatment poses a threat to the patient’s identity, and (3) to examine whether the current framework for rehabilitation after DBS procedures should be updated and take into account the BoN syndrome as a postoperative self-change response. (shrink)

The phenomenological effects of deep brain stimulation (DBS) on the self of the patient remains poorly understood and under described in the literature, despite growing evidence that a significant number of patients experience postoperative neuropsychiatric changes. To address this lack of phenomenological evidence, we conducted in-depth, semistructured interviews with 17 patients with Parkinson's disease who had undergone DBS. Exploring the subjective character specific to patients' experience of being implanted gives empirical and conceptual understanding of the potential phenomenon of DBS-induced self-estrangement. (...) Our study concluded that (1) the more patients preoperatively felt alienated by their illness, the more they experienced postoperative self-estrangement, and (2) the notion of self-estrangement seems to exist in association with certain common qualitative characters, namely, loss of control, which reflects a deteriorative estrangement, and distorted perception of capacities, which reveals a restorative estrangement. These findings indicate that subjective self-reports help us to understand some aspects of the potential phenomenon of DBS-induced self-estrangement. (shrink)

The idea that deep brain stimulation (DBS) induces changes to personality, identity, agency, authenticity, autonomy and self (PIAAAS) is so deeply entrenched within neuroethics discourses that it has become an unchallenged narrative. In this article, we critically assess evidence about putative effects of DBS on PIAAAS. We conducted a literature review of more than 1535 articles to investigate the prevalence of scientific evidence regarding these potential DBS-induced changes. While we observed an increase in the number of publications in theoretical neuroethics (...) that mention putative DBS-induced changes to patients’ postoperative PIAAAS, we found a critical lack of primary empirical studies corroborating these claims. Our findings strongly suggest that the theoretical neuroethics debate on putative effects of DBS relies on very limited empirical evidence and is, instead, reliant on unsubstantiated speculative assumptions probablyin lieuof robust evidence. As such, this may reflect the likelihood of a speculative neuroethics bubble that may need to be deflated. Nevertheless, despite the low number of first-hand primary studies and large number of marginal and single case reports, potential postoperative DBS changes experienced by patients remain a critical ethical concern. We recommend further empirical research in order to enhance theoretical neuroethics work in the area. In particular, we call for the development of better instruments capable of capturing potential postoperative variations of PIAAAS. (shrink)

People suffering from Obsessive-Compulsive Disorder (OCD) do things they do not want to do, and/or they think things they do not want to think. In about 10 percent of OCD patients, none of the available treatment options is effective. A small group of these patients is currently being treated with deep brain stimulation (DBS). Deep brain stimulation involves the implantation of electrodes in the brain. These electrodes give a continuous electrical pulse to the brain area in which they are implanted. (...) It turns out that patients may experience profound changes as a result of DBS treatment. It is not just the symptoms that change; patients rather seem to experience a different way of being in the world. These global effects are insufficiently captured by traditional psychiatric scales, which mainly consist of behavioural measures of the severity of the symptoms. In this article we aim to capture the changes in the patients’ phenomenology and make sense of the broad range of changes they report. For that we introduce an enactive, affordance-based model that fleshes out the dynamic interactions between person and world in four aspects. The first aspect is the patients’ experience of the world. We propose to specify the patients’ world in terms of a field of affordances, with the three dimensions of broadness of scope (‘width’ of the field), temporal horizon (‘depth’), and relevance of the perceived affordances (‘height’). The second aspect is the person-side of the interaction, that is, the patients’ self-experience, notably their moods and feelings. Thirdly, we point to the different characteristics of the way in which patients relate to the world. And lastly, the existential stance refers to the stance that patients take towards the changes they experience: the second-order evaluative relation to their interactions and themselves. With our model we intend to specify the notion of being in the world in order to do justice to the phenomenological effects of DBS treatment. (shrink)

Gilbert et al. argue that discussions of self-related changes in patients undergoing DBS are overblown. They show that there is little evidence that these changes occur frequently and make recommendations for further research. We point out that their framing of the issue, their methodology, and their recommendations do not attend to other important questions about these changes.

This article explores the notion of the dislocated self following deep brain stimulation (DBS) and concludes that when personal identity is understood in dynamic, narrative, and relational terms, the claim that DBS is a threat to personal identity is deeply problematic. While DBS may result in profound changes in behaviour, mood and cognition (characteristics closely linked to personality), it is not helpful to characterize DBS as threatening to personal identity insofar as this claim is either false, misdirected or trivially true. (...) The claim is false insofar as it misunderstands the dynamic nature of identity formation. The claim is misdirected at DBS insofar as the real threat to personal identity is the discriminatory attitudes of others towards persons with motor and other disabilities. The claim is trivially true insofar as any dramatic event or experience integrated into one’s identity-constituting narrative could then potentially be described as threatening. From the perspective of relational personal identity, when DBS dramatically disrupts the narrative flow, this disruption is best examined through the lens of agency. For illustrative purposes, the focus is on DBS for the treatment of Parkinson’s disease. (shrink)

In At the Will of the Body , Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait. Ill people are more than victims of disease or patients of medicine they are wounded storytellers. People tell stories to make sense of their suffering when they turn their diseases into (...) stories, they find healing. Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known--Gilda Radner's battle with ovarian cancer--to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new. (shrink)

What is illness? Is it a physiological dysfunction, a social label, or a way of experiencing the world? How do the physical, social and emotional worlds of a person change when they become ill? And can there be well-being within illness? In this remarkable and thought-provoking book, Havi Carel explores these questions by weaving together the personal story of her own serious illness with insights and reflections drawn from her work as a philosopher. Carel's fresh approach to illness raises some (...) uncomfortable questions about how we all - whether healthcare professionals or not - view the ill and challenges us to become more thoughtful. 'Illness' unravels the tension between the universality of illness and its intensely private, often lonely, nature. It offers a new way of looking at a matter that affects every one of us. (shrink)

What is illness? Is it a physiological dysfunction, a social label, or a way of experiencing the world? How do the physical, social and emotional worlds of a person change when they become ill? And can there be well-being within illness? In this remarkable and thought-provoking book, Havi Carel explores these questions by weaving together the personal story of her own serious illness with insights and reflections drawn from her work as a philosopher. Carel shows how the concepts and language (...) used to describe illness today are inappropriate and misleading. Too often illness is viewed as a localised biological dysfunction while ignoring the actual experience of the ill person, their fears, their hopes, the way they interact with others and, ultimately, experience life. By focusing on the impact of illness on the ill person's life and reflecting on the experience of illness as lived from within, Carel shows how illness is a life-changing process rather than a limited physiological problem. Carel's fresh approach to illness raises some uncomfortable questions about how we all - whether healthcare professionals or not - view the ill and challenges us to become more thoughtful. "Illness" unravels the tension between the universality of illness and its intensely private, often lonely, nature. It offers a new way of looking at a matter that affects every one of us. For those who are ill, it offers insights on our ability to remain happy within the constraints of illness. (shrink)

Does DBS change a patient’s personality? This is one of the central questions in the debate on the ethics of treatment with Deep Brain Stimulation (DBS). At the moment, however, this important debate is hampered by the fact that there is relatively little data available concerning what patients actually experience following DBS treatment. There are a few qualitative studies with patients with Parkinson’s disease and Primary Dystonia and some case reports, but there has been no qualitative study yet with patients (...) suffering from psychiatric disorders. In this paper, we present the experiences of 18 patients with Obsessive-Compulsive Disorder (OCD) who are undergoing treatment with DBS. We will also discuss the inherent difficulties of how to define and assess changes in personality, in particular for patients with psychiatric disorders. We end with a discussion of the data and how these shed new light on the conceptual debate about how to define personality. (shrink)