The ethical debate about neurotechnologies—including both drugs and implanted devices—has been largely framed around the questions of whether and when these technologies could damage or promote authenticity. Patients can experience changes in mood, behavior, emotion, or preferences—seemingly, changes in character or personality. Some describe such changes by saying they feel like different people; that they have become either more or less themselves; or that they feel as though some of their moods, behaviors, emotions or preferences are not their own. These (...) kinds of statements are used to describe both changes that a drug or device is... (shrink)

There is evidence to suggest that some patients who undergo Deep Brain Stimulation can experience changes to dispositional, emotional and behavioural states that play a central role in conceptions of personality, identity, autonomy, authenticity, agency and/or self. For example, some patients undergoing DBS for Parkinson’s Disease have developed hypersexuality, and some have reported increased apathy. Moreover, experimental psychiatric applications of DBS may intentionally seek to elicit changes to the patient’s dispositional, emotional and behavioural states, in so far as dysfunctions in (...) these states may undergird the targeted disorder. Such changes following DBS have been of considerable interest to ethicists, but there is a considerable degree of conflict amongst different parties to this debate about whether DBS really does change PIAAAS, and whether this matters. This paper explores these conflicting views and suggests that we may be able to mediate this conflict by attending more closely to what parties to the debate mean when they invoke the concepts lumped together under the acronym PIAAAS. Drawing on empirical work on patient attitudes, this paper outlines how these different understandings of the concepts incorporated into PIAAAS have been understood in this debate, and how they may relate to other fundamental concepts in medical ethics such as well-being and autonomy. The paper clarifies some key areas of disagreement in this context, and develops proposals for how ethicists might fruitfully contribute to future empirical assessments of apparent changes to PIAAAS following DBS treatment. (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)

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)

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)

In the theoretical literature on moral responsibility, one sometimes comes across cases of manipulated agents. In cases of this type, the agent is a victim of wholesale manipulation, involving the implantation of various pro-attitudes (desires, values, etc.) along with the deletion of competing pro-attitudes. As a result of this manipulation, the agent ends up performing some action unlike any that she would have performed were it not for the manipulation. These sorts of cases are sometimes thought to motivate historical views (...) of responsibility, on which the agent’s past is relevant to whether she is responsible for a specific action. In a recent paper, Daniel Sharp and David Wasserman bring these theoretical discussions on moral responsibility to bear on practical issues regarding neurological modifications of individuals. After proposing and arguing for a historical view, Sharp and Wasserman offer some insight into how such a view may help us in determining the responsibility of subjects who have undergone Deep Brain Stimulation. This paper aims to join this discussion, by arguing that the correct historical view to be applied will also appeal to the agent’s control over her mental life and the fact that this was bypassed. I conclude with some brief comments on the practical implications of such a historical view. (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)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

A number of reports have suggested that patients who undergo deep brain stimulation may experience changes to their personality or sense of self. These reports have attracted great philosophical interest. This paper surveys the philosophical literature on personal identity and DBS and draws on an emerging empirical literature on the experiences of patients who have undergone this therapy to argue that the existing philosophical discussion of DBS and personal identity frames the problem too narrowly. Much of the discussion by neuroethicists (...) centers on the nature of the threat posed by DBS, asking whether it is best understood as a threat to personal identity, autonomy, agency, or authenticity, or as putting patients at risk of self-estrangement. Our aim in this paper is to use the empirical literature on patients’ experiences post-DBS to open up a broader range of questions - both philosophical and practical, and to suggest that attention to these questions will help to provide better support to patients, both before and after treatment. (shrink)

Despite growing evidence that a significant number of patients living with Parkison’s disease experience neuropsychiatric changes following Deep Brain Stimulation treatment, the phenomenon remains poorly understood and largely unexplored in the literature. To shed new light on this phenomenon, we used qualitative methods grounded in phenomenology to conduct in-depth, semi-structured interviews with 17 patients living with Parkinson’s Disease who had undergone DBS. Our study found that patients appear to experience postoperative DBS-induced changes in the form of self-estrangement. Using the insights (...) from patients’ subjective perceptions of postoperative self-change provides a potent explanation of potential DBS-induced self-estrangement. (shrink)

Gilbert et al. argue that the concerns about the influence of Deep Brain Stimulation on – as they lump together – personality, identity, agency, autonomy, authenticity and the self are due to an ethics hype. They argue that there is only a small empirical base for an extended ethics debate. We will critically examine their claims and argue that Gilbert and colleagues do not show that the identity debate in DBS is a bubble, they in fact give very little evidence (...) for that. Rather they show the challenges of doing research in a field that is stretched out over multiple disciplines. In that sense their paper is an important starting point for a discussion on methodology and offers valuable lessons for a future research agenda. (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.

In the current advent of technological innovation allowing for precise neural manipulations and copious data collection, it is hardly questioned that the explanation of behavioral processes is to be chiefly found in neural circuits. Such belief, rooted in the exhausted dualism of cause and effect, is enacted by a methodology that promotes “necessity and sufficiency” claims as the goal-standard in neuroscience, thus instructing young students on what shall reckon as explanation. Here we wish to deconstruct and explicate the difference between (...) what is done, what is said, and what is meant by such causal circuit explanations of behavior. Well-known to most philosophers, yet ignored or at least hardly ever made explicit by neuroscientists, the original grand claim of “understanding the brain” is imperceptibly substituted by the methodologically sophisticated task of empirically establishing counterfactual dependencies. But for the 21st century neuroscientist, after so much pride, this is really an excess of humility. I argue that to upgrade intervention to explanation is prone to logical fallacies, interpretational leaps and carries a weak explanatory force, thus settling and maintaining low standards for intelligibility in neuroscience. To claim that behavior is explained by a “necessary and sufficient” neural circuit is, at best, misleading. In that, my critique is indeed mainly negative. Positively, I briefly suggest some available alternatives for conceptual progress, such as adopting circular causality, searching for principles of behavior, and embracing process philosophy. Overall, if the goal of neuroscience is to understand the relation between brain and behavior then, in addition to excruciating neural studies, we will need a strong theory of behavior and a solid foundation to establish their relation. (shrink)

In this article, we sketch how theoretical neuroethics can clarify the concept of autonomy. We hope that this can both serve as a model for the conceptual clarification of other components of PIAAAS and contribute to the development of the empirical measures that Gilbert and colleagues [1] propose.

Deep brain stimulation of the subthalamic nucleus for the treatment of Parkinson’s disease can lead to the development of neuropsychiatric symptoms. These can include harmful changes in mood and behaviour that alienate family members and raise ethical questions about personal responsibility for actions committed under stimulation-dependent mental states. Qualitative interviews were conducted with twenty participants following subthalamic DBS at a movement disorders centre, in order to explore the meaning and significance of stimulation-related neuropsychiatric symptoms amongst a purposive sample of persons (...) with PD and their spousal caregivers. Interview transcripts underwent inductive thematic analysis. Clinical and experiential aspects of post-DBS neuropsychiatric symptoms were identified. Caregivers were highly burdened by these symptoms and both patients and caregivers felt unprepared for their consequences, despite having received information prior to DBS, desiring greater family and peer engagement prior to neurosurgery. Participants held conflicting opinions as to whether emergent symptoms were attributable to neurostimulation. Many felt that they reflected aspects of the person’s “real” or “younger” personality. Those participants who perceived a close relationship between stimulation changes and changes in mental state were more likely to view these symptoms as inauthentic and uncontrollable. Unexpected and troublesome neuropsychiatric symptoms occurred despite a pre-operative education programme that was delivered to all participants. This suggests that such symptoms are difficult to predict and manage even if best practice guidelines are followed by experienced centres. Further research aimed at predicting these complications may improve the capacity of clinicians to tailor the consent process. (shrink)

Gilbert et al. argue that the neuroethics literature discussing the putative effects of Deep Brain Stimulation on personality largely ignores the scientific evidence and presents distorted claims that personality change is induced by the DBS stimulation. This study contributes to the first-hand primary research on the topic exploring DBS clinicians’ views on post-DBS personality change among their patients and its underlying cause. Semi-structured interviews were conducted with sixteen clinicians from various disciplines working in Australian DBS practice for movement disorders and/or (...) psychiatric conditions. Thematic analysis of the interviews revealed five primary themes: 1) types, frequency and duration of personality change, 2) causes of personality change, 3) impact on patient and family, 4) communication, comprehension and awareness, and 5) management. Clinicians described a variety of personality changes in Parkinson’s disease following DBS including irritability, impulsivity and impaired decision-making. The frequency of personality change seen in patients varied amongst clinicians, but changes were overwhelmingly transient. Clinicians considered both DBS stimulation and additional factors as inducing personality change. For DBS patients with major depressive disorder, a restoration of pre-morbid personality was associated with alleviation of illness. Considerations for future research of personality change following DBS include selecting suitable tools for quantitative examination and developing a common language between the scientific and ethics communities. Clinical implications including recommendations for the informed consent process for patients and families and clinicians’ management of personality change are discussed. (shrink)

Timothy Brown's piece "Building Intricate Partnerships with Neurotechnology" makes a valuable contribution to ethical discussion of questions about human identity and agency raised by Deep Brain Stimulation. The paper brings together a number of relational approaches to narrative identity and autonomy, drawing on first-personal empirical accounts, to extend a relational account of agency to include neurostimulators. In doing so, it builds on the contributions relational approaches have made to making sense of changes to aspects of selfhood following neurological intervention while (...) also helpfully reframing concerns away from the threat that DBS may pose to aspects of self-hood. This approach directs... (shrink)

One important concern regarding implantable Brain Computer Interfaces is the fear that the intervention will negatively change a patient’s sense of identity or agency. In particular, there is concern that the user will be psychologically worse-off following treatment despite postoperative functional improvements. Clinical observations from similar implantable brain technologies, such as deep brain stimulation, show a small but significant proportion of patients report feelings of strangeness or difficulty adjusting to a new concept of themselves characterized by a maladaptive je ne (...) sais quoi despite clear motor improvement. Despite the growing number of cases in the DBS literature, there is currently no accepted or standardized tool in neuroethics specifically designed to capture the phenomenological postoperative experience of patients implanted with DBS or BCI devices. Given potential risks of postoperative maladaptation, it is important for the field of neuroethics to develop a qualitative instrument that can serve as a shared method for capturing postoperative variations in patient experience of identity and agency. The goal of this article is to introduce an instrument we have developed for this purpose and call for further neuroethical efforts to assess the phenomenology of implantable brain device use. (shrink)

Bioethics has already had a rich interaction with the relatively new field of neurotechnology. Scholars have wondered whether neurotechnological interventions, such as deep brain stimulation, are threats to personal identity, lead to alienation or create dilemmas between authenticity and autonomy, impact autonomy, detract from agency, or lead to self-estrangement. Many of these ethical investigations are concerned not with the targeted health benefits of neurotechnology but with whether and how they fit into users' lives in more personal and profound ways.In some (...) ways, this focus on general bioethical issues... (shrink)

BackgroundValue sensitivity – the ability to recognize value-related issues when they arise in practice – is an indispensable competence for medical practitioners to enter decision-making processes related to ethical questions. However, the psychological competence of value sensitivity is seldom an explicit subject in the training of medical professionals. In this contribution, we outline the traditional concept of moral sensitivity in medicine and its revised form conceptualized as value sensitivity and we propose an instrument that measures value sensitivity.MethodsWe developed an instrument (...) for assessing the sensitivity for three value groups in a four step procedure: 1) value identification ; 2) value representation ; 3) vignette construction and quality evaluation ; and 4) instrument validation by comparing nursing professionals with hospital managers.ResultsWe find that nursing professionals recognize and ascribe importance to principle-related issues more than professionals from hospital management. The latter are more likely to recognize and ascribe importance to strategy-related issues.ConclusionsThese hypothesis-driven results demonstrate the discriminatory power of our newly developed instrument, which makes it useful not only for health care professionals in practice but for students and people working in the clinical context as well. (shrink)

Having reviewed a considerable body of scholarly work in neuroethics related to DBS, Gilbert, Viaña, and Ineichen identify a major flaw in the debate—a “bubble” in the literature—and propose new directions for research. This comment addresses the authors’ diagnosis: What exactly is the nature of this bubble? Here, I argue that there are at least two different orientations in the “DBS causes personality changes” bubble. According to a first narrative, DBS is a special technology because its direct, causal action on (...) the brain leads to personality changes. This approach emphasizes the brain as the seat of personality, the locus of identity, or the center of agency. According to a second narrative, technology in general plays a major role in our lives and in our experiences as human subjects, and DBS is no exception. Technology matters up to the point that it reshapes, redefines, or re-determines traditional concepts such as personality, authenticity, or agency. I point out that both narratives are distinct components of the “DBS causes personality changes” bubble diagnosed by the authors of the target article and claim that the two narratives raise somehow different philosophical and empirical issues. (shrink)

Gilbert and colleagues are to be commended for drawing our attention to the need for a sounder empirical basis, and for more careful reasoning, in the context of the neuroethics debate on Deep Brain Stimulation (DBS) and its potential impact on the dimensions of personality, identity, agency, authenticity, autonomy and self (PIAAAS). While acknowledging this, this extended commentary critically examines their claim that the real-world relevance of the conclusions drawn in the neuroethics literature is threatened by the fact that the (...) concepts at the center of the discussion have “weak empirical grounding”. First, I show that while some possible understandings of multifaceted concepts like identity, authenticity and autonomy may indeed be unsuitable for a purely empirical inquiry, this is not the case of all of them. Secondly, I call into question the authors’ apparent suggestion that reliance on constructs involving an irreducibly normative dimension makes for a suboptimal state of affairs, and that they should ideally be replaced with substitutes taken from the language of neuroscience or social science in order to ensure an adequate empirical grounding for the debate. Such a suggestion, I argue, commits the authors to a controversial reductionist view in metaethics that the valid empirical concerns they raise in the rest of their article do not presuppose, and which could potentially us lead to lose sight of important ethical considerations. (shrink)