Substantial discussion in the neuroethical literature has addressed the possibility that deep brain stimulation (DBS) and adaptive DBS (aDBS) could result in changes in personality, agency, and ide...

Deep brain stimulation (DBS), a surgical procedure involving the implantation of electrodes in the brain, has rekindled the medical community’s interest in psychosurgery. Whereas many researchers argue DBS is substantially different from psychosurgery, we argue psychiatric DBS—though a much more precise and refined treatment than its predecessors—is nevertheless a form of psychosurgery, which raises both old and new ethical and legal concerns that have not been given proper attention. Learning from the ethical and regulatory failures of older forms of psychosurgery (...) can help shed light on how to address the regulatory gaps that exist currently in DBS research. To show why it is important to address the current regulatory gaps within psychiatric DBS, we draw on the motivations underlying the regulation of earlier forms of psychosurgery in the US. We begin by providing a brief history of psychosurgery and electrical brain stimulation in the US. Against this backdrop, we introduce psychiatric DBS, exploring current research and ongoing clinical trials. We then draw out the ethical and regulatory similarities between earlier forms of psychosurgery and psychiatric DBS. As we will show, the factors that motivated strict regulation of earlier psychosurgical procedures mirror concerns with psychiatric DBS today. We offer three recommendations for psychiatric DBS regulation, which echo earlier motivations for regulating psychosurgery, along with new considerations that reflect the novel technologies used in DBS. (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.

Deep brain stimulation (DBS) is an approved treatment for neurological diseases and a promising one for psychiatric conditions, which may produce spectacular results very quickly. It is also a powerful tool for brain research and exploration. Beyond an overview of the ethical and legal literature on this topic, this paper aims at showing that DBS is a compelling example for ethical-legal reflection, as it combines a highly technical surgical procedure, a complex active medical device and neuromodulation of the human brain (...) to restore lost abilities caused by a chronic and evolving disease. Some of the ethical and legal issues raised by DBS are not specific, but shed new light on medical ethics and law. Others are more DBS-specific, as they are linked to the intricacies of research and treatment, to the need to tune the device, to the patients’ control over the device and its effects and to the involvement of family caregivers. (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)

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)

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.

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.

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)

Generations of researchers observed a mismatch between headphone and loudspeaker presentation: the sound pressure level at the eardrum generated by a headphone has to be about 6 dB higher compared to the level created by a loudspeaker that elicits the same loudness. While it has been shown that this effect vanishes if the same waveforms are generated at the eardrum in a blind comparison, the origin of the mismatch is still unclear. We present new data on the issue that systematically (...) characterize this mismatch under variation of the stimulus frequency, presentation room, and binaural parameters of the headphone presentation. Subjects adjusted the playback level of a headphone presentation to equal loudness as loudspeaker presentation, and the levels at the eardrum were determined through appropriate transfer function measurements. Identical experiments were conducted at Oldenburg and Aachen with 40 normal-hearing subjects including 14 that passed through both sites. Our data verify a mismatch between loudspeaker and binaural headphone presentation, especially at low frequencies. This mismatch depends on the room acoustics, and on the interaural coherence in both presentation modes. It vanishes for high frequencies and broadband signals if individual differences in the sound transfer to the eardrums are accounted for. Moreover, small acoustic and non-acoustic differences in an anechoic reference environment exert a large effect on the recorded loudness mismatch, whereas not such a large effect of the respective room is observed across moderately reverberant rooms at both sites. Hence, the non-conclusive findings from the literature appear to be related to the experienced disparity between headphone and loudspeaker presentation, where even small differences in room acoustics significantly change the response behavior of the subjects. Moreover, individual factors like loudness summation appear to be only loosely connected to the observed mismatch, i.e., no direct prediction is possible from individual binaural loudness summation to the observed mismatch. These findings – even though not completely explainable by the yet limited amount of parameter variations performed in this study – have consequences for the comparability of experiments using loudspeakers with conditions employing headphones or other ear-level hearing devices. (shrink)

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. (shrink)

The number of indications for deep brain stimulation (DBS) is steadily increasing, with formal approvals for use in Parkinson's disease (PD) and a select group of other indications. Promising sympt...

The article Deflating the "DBS causes personality changes" bubble, written by Frederic Gilbert, J. N. M. Viaña and C. Ineichen, was originally published electronically on the publisher’s internet portal on 19 June 2018 without open access.

IntroductionDeep brain stimulation is an effective treatment for advanced Parkinson’s disease with the targeting bilateral subthalamic nucleus or globus pallidus internus. So far, detailed studies on the efficacy of unilateral STN-DBS for motor symptoms have been reported, but few studies have been conducted on unilateral GPi-DBS.Materials and MethodsSeventeen patients with Parkinson’s disease who underwent unilateral GPi-DBS were selected. We conducted comparison analyses between scores obtained 6–42 months pre- and postoperatively using the following measurement tools: the Movement Disorder Society Unified Parkinson’s (...) Disease Rating Scale part III, the Hoehn and Yahr stage, the presence/absence of dyskinesia, Mini-Mental State Examination, Frontal Assessment Battery, Geriatric Depression Scale, levodopa equivalent dose, and cerebral blood flow by single photon emission computed tomography. Patient backgrounds were compared between four cohorts with favorable and unfavorable postoperative outcome.ResultsSignificant improvement was observed postoperatively in the following: total MDS-UPDRS Part III scores during the off period, contralateral scores, ipsilateral scores, and axial scores. Similarly, the Hoehn and Yahr stages during the off period, and GDS also showed significant decrease. In contrast, LED, MMSE, and FAB remained unchanged while the number of patients who scored positive for dyskinesia decreased by 40%. Abnormal cerebral blood flow preoperatively seen in the cerebral cortex had normalized in the total score-based good responder cohort. In the ipsilateral score-based good responder cohort, cerebral blood flow increased in the contralateral frontal lobe including in the premotor cortex, contralateral to the DBS. Compared to the poor responders, postoperative good responders demonstrated significantly higher preoperative MMSE scores.DiscussionUnilateral GPi-DBS therapy was effective in improving contralateral, ipsilateral, and axial motor symptoms of patients with advanced PD; in particular, it was found to be especially beneficial in PwPD whose cognitive function was unimpaired; the treatment efficacy rivaled that of bilateral counterparts up till at least 6 months postoperatively. Finally, normalization of preoperative abnormalities in cerebral blood flow and increased cerebral blood flow in the contralateral frontal lobe indicated the beneficial potential of this therapy on ipsilateral motor symptoms. (shrink)

Deep brain stimulation is a well-accepted treatment for movement disorders and is currently explored as a treatment option for various neurological and psychiatric disorders. Several case studies suggest that DBS may, in some patients, influence mental states critical to personality to such an extent that it affects an individual’s personal identity, i.e. the experience of psychological continuity, of persisting through time as the same person. Without questioning the usefulness of DBS as a treatment option for various serious and treatment refractory (...) conditions, the potential of disruptions of psychological continuity raises a number of ethical and legal questions. An important question is that of legal responsibility if DBS induced changes in a patient’s personality result in damage caused by undesirable or even deviant behavior. Disruptions in psychological continuity can in some cases also have an effect on an individual’s mental competence. This capacity is necessary in order to obtain informed consent to start, continue or stop treatment, and it is therefore not only important from an ethical point of view but also has legal consequences. Taking the existing literature and the Dutch legal system as a starting point, the present paper discusses the implications of DBS induced disruptions in psychological continuity for a patient’s responsibility for action and competence of decision and raises a number of questions that need further research. (shrink)

Owing to an oversight, we noted that the acknowledgement section was missing from the original published version of this paper.

We estimate that 208,000 deep brain stimulation (DBS) devices have been implanted to address neurological and neuropsychiatric disorders worldwide. DBS Think Tank presenters pooled data and determined that DBS expanded in its scope and has been applied to multiple brain disorders in an effort to modulate neural circuitry. The DBS Think Tank was founded in 2012 providing a space where clinicians, engineers, researchers from industry and academia discuss current and emerging DBS technologies and logistical and ethical issues facing the field. (...) The emphasis is on cutting edge research and collaboration aimed to advance the DBS field. The Eighth Annual DBS Think Tank was held virtually on September 1 and 2, 2020 (Zoom Video Communications) due to restrictions related to the COVID-19 pandemic. The meeting focused on advances in: (1) optogenetics as a tool for comprehending neurobiology of diseases and on optogenetically-inspired DBS, (2) cutting edge of emerging DBS technologies, (3) ethical issues affecting DBS research and access to care, (4) neuromodulatory approaches for depression, (5) advancing novel hardware, software and imaging methodologies, (6) use of neurophysiological signals in adaptive neurostimulation, and (7) use of more advanced technologies to improve DBS clinical outcomes. There were 178 attendees who participated in a DBS Think Tank survey, which revealed the expansion of DBS into several indications such as obesity, post-traumatic stress disorder, addiction and Alzheimer’s disease. This proceedings summarizes the advances discussed at the Eighth Annual DBS Think Tank. (shrink)

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, caregivers, and medical professionals, I develop an empirical and philosophical investigation of the temporalities surrounding the implementation of deep brain stimulation 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. (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 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 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)