The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...) smaller majority reported changes in personality specifically. Some expressed reservations about the scientific status of the term ‘personality,’ while others used it freely. Most researchers discussed negative PMB changes, but a majority said that DBS/aDBS can also result in positive changes. Several researchers viewed positive PMB changes as part of the therapeutic goal in psychiatric applications of DBS/aDBS. Finally, several discussed potential causes of PMB changes other than the device itself. (shrink)

There has been a growing interest in research concerning memory modification technologies (MMTs) in recent years. Neuroscientists and psychologists are beginning to explore the prospect of controllable and intentional modification of human memory. One of the technologies with the greatest potential to this end is optogenetics—an invasive neuromodulation technique involving the use of light to control the activity of individual brain cells. It has recently shown the potential to modify specific long-term memories in animal models in ways not yet possible (...) with other MMTs. As the therapeutic potential of optogenetics has already prompted approval of the first human trials, it is especially important and timely to consider the opportunities and dangers this technology may entail. In this article, we focus on possible consequences of optogenetics as an MMT by analyzing fundamental threats potentially associated with memory modifications: the potential disruption of personality and authenticity. (shrink)

The aims of this paper are to: (1) identify the best framework for comprehending multidimensional impact of deep brain stimulation on the self; (2) identify weaknesses of this framework; (3) propose refinements to it; (4) in pursuing (3), show why and how this framework should be extended with additional moral aspects and demonstrate their interrelations; (5) define how moral aspects relate to the framework; (6) show the potential consequences of including moral aspects on evaluating DBS’s impact on patients’ selves. Regarding (...) (1), I argue that the pattern theory of self can be regarded as such a framework. In realizing (2) and (3), I indicate that most relevant issues concerning PTS that require resolutions are ontological issues, including the persistence question, the “specificity problem”, and finding lacking relevant aspects of the self. In realizing (4), I identify aspects of the self not included in PTS which are desperately needed to investigate the full range of potentially relevant DBS-induced changes—authenticity, autonomy, and responsibility, and conclude that how we define authenticity will have implications for our concept of autonomy, which in turn will determine how we think about responsibility. Concerning (5), I discuss a complex relation between moral aspects and PTS—on one hand, they serve as the lens through which a particular self-pattern can be evaluated; on the other, they are, themselves, products of dynamical interactions of various self-aspects. Finally, I discuss (6), demonstrating novel way of understanding the effects of DBS on patients’ selves. (shrink)

For nearly two decades, ethicists have expressed concerns that the further development and use of memory modification technologies (MMTs)—techniques allowing to intentionally and selectively alter memories—may threaten the very foundations of who we are, our personal identity, and thus pose a threat to our well-being, or even undermine our “humaneness.” This paper examines the potential ramifications of memory-modifying interventions such as changing the valence of targeted memories and selective deactivation of a particular memory as these interventions appear to be at (...) the same time potentially both most promising clinically as well as menacing to identity. However, unlike previous works discussing the potential consequences of MMTs, this article analyzes them in the context of the narrative relational approach to personal identity and potential issues related to autonomy. I argue that such a perspective brings to light the ethical aspects and moral issues arising from the use of MMTs that have been hidden from previously adopted approaches. In particular, this perspective demonstrates how important the social context in which an individual lives is for the ethical evaluation of a given memory-modifying intervention. I conclude by suggesting that undertaking memory modifications without taking into account the social dimension of a person’s life creates the risk that she will not be able to meet one of the basic human needs—the autonomous construction and maintenance of personal identity. Based on this conclusion, I offer some reflections on the permissibility and advisability of MMTs and what these considerations suggest for the future. (shrink)

Deep Brain Stimulation (DBS) is an invasive therapeutic method involving the implantation of electrodes and the electrical stimulation of specific areas of the brain to modulate their activity. DBS brings therapeutic benefits, but can also have adverse side effects. Recently, neuroethicists have recognized that DBS poses a threat to the very fabric of human existence, namely, to the selves of patients. This article provides a review of the neuroethical literature examining this issue, and identifies the crucial dimensions related to the (...) self which DBS may endanger—personal identity, authenticity, and autonomy. The most influential theories accounting for these dimensions are analyzed herein, and it is argued that most of these theories require further refinement. This paper also demonstrates the interrelation between personal identity, authenticity, and autonomy, and concludes that one can only fully understand the impact of DBS on the self when all of these factors are taken into account. (shrink)

Deep brain stimulation (DBS) is an up-and-coming therapeutic approach in psychiatry. Although recent studies have demonstrated that DBS is relatively safe, little is known about its impact on a patient's life. A comprehensive outcome assessment is required so as to ensure valid scientific findings for the proper counseling of future patients; a thorough benefit–harm assessment plays an important role in planning of the therapeutic process. Starting from a basic anthropological and ethical premise, disorder-specific and intervention-related parameters concerning a wide range (...) of data relating to the individual person would need to be amassed. These data can be collected by means of a combination of quantitative tests and qualitative interviews, including the perspective of the patient and of a closely related person. They can be presented using codes from the WHO International Classification of Functioning, Disability and Health (ICF). An international consensus group on outcome assessment and coding according to the ICF could be established in psychiatric DBS. (shrink)

Ein Leitmotiv der medizinethischen Auseinandersetzung mit der tiefen Hirnstimulation (THS) ist die Beschäftigung mit Fragen personaler Identität. Da es sich bei personaler Identität auch um ein Problem der theoretischen Philosophie handelt, wird in diesem Aufsatz nicht nur die praktische Frage nach der ethischen Legitimation der THS durch informierte Einwilligung gestellt und ein modifiziertes Legitimationskriterium für wesensändernde THS erarbeitet. Vielmehr wird zunächst versucht, das Problem, um das es in der Debatte um THS und personaler Identität geht, besser zu verstehen.

Ein Leitmotiv der medizinethischen Auseinandersetzung mit der tiefen Hirnstimulation (THS) ist die Beschäftigung mit Fragen personaler Identität. Da es sich bei personaler Identität auch um ein Problem der theoretischen Philosophie handelt, wird in diesem Aufsatz nicht nur die praktische Frage nach der ethischen Legitimation der THS durch informierte Einwilligung gestellt und ein modifiziertes Legitimationskriterium für wesensändernde THS erarbeitet. Vielmehr wird zunächst versucht, das Problem, um das es in der Debatte um THS und personaler Identität geht, besser zu verstehen.

Ein Leitmotiv der medizinethischen Auseinandersetzung mit der tiefen Hirnstimulation (THS) ist die Beschäftigung mit Fragen personaler Identität. Da es sich bei personaler Identität auch um ein Problem der theoretischen Philosophie handelt, wird in diesem Aufsatz nicht nur die praktische Frage nach der ethischen Legitimation der THS durch informierte Einwilligung gestellt und ein modifiziertes Legitimationskriterium für wesensändernde THS erarbeitet. Vielmehr wird zunächst versucht, das Problem, um das es in der Debatte um THS und personaler Identität geht, besser zu verstehen.

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)

Patients with amyotrophic lateral sclerosis (ALS) face many difficult, timing-sensitive decisions over the course of their illness, weighing present versus future harms and benefits. Supplemented by interviews with people with ALS, we argue for a relational approach to understanding these decisions and their effects on identity. We highlight two critical aspects of the patient–caregiver relationship: (1) the extent to which each may rely on the other leaves their wellbeing intimately intertwined and (2) patients often require others to help with the (...) imaginative task of considering possible futures for each therapeutic option. We show why family involvement in decisionmaking practices can be so critical, and shed light on the ways intimate others help preserve and protect people’s identities amidst the destabilizing uncertainty illness and treatment can bring. (shrink)

The development of novel neurotechnologies, such as brain-computer interface (BCI) and deep-brain stimulation (DBS), are very promising in improving the welfare and life prospects many people. These include life-changing therapies for medical conditions and enhancements of cognitive, emotional, and moral capacities. Yet there are also numerous moral risks and uncertainties involved in developing novel neurotechnologies. For this reason, the progress of novel neurotechnology research requires that diverse publics place trust in researchers to develop neural interfaces in ways that are overall (...) beneficial to society and responsive to ethical values and concerns. In this article, we argue that researchers and research institutions have a moral responsibility to foster and demonstrate trustworthiness with respect to broader publics whose lives will be affected by their research. Using Annette Baier’s conceptual analysis of trust, which takes competence and good will to be its central components, we propose that practices of ethical reflexivity could play a valuable role in fostering the trustworthiness of individual researchers and research institutions through building and exhibiting their moral competence and good will. By ethical reflexivity, we mean the reflective and discursive activity of articulating, analyzing, and assessing the assumptions and values that might be underlying their ethical actions and projects. Here, we share an ethics dialog tool—called the Scientific Perspectives and Ethics Commitments Survey (or SPECS)—developed by the University of Washington’s Center of Neurotechnology (CNT) Neuroethics Thrust. Ultimately, the aim is to show the promise of ethical reflexivity practices, like SPECS, as a method of enhancing trustworthiness in researchers and their institutions that seek to develop novel neurotechnologies for the overall benefit of society. (shrink)

The debate on the ethical aspects of moral bioenhancement focuses on the desirability of using biomedical as opposed to traditional means to achieve moral betterment. The aim of this paper is to systematically review the ethical reasons presented in the literature for and against moral bioenhancement.

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)

The definition of “personality” and related concepts is both unclear and not unified among medical, scientific, humanities and social sciences experts (i.e., essentialist, dynamic view of self, nar...

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)

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)

This article suggests that investigational deep brain stimulation (DBS) for mental disorders raises few new bioethical issues. Although the scientific basis of the procedure may be both complex and largely unknown, addressing informed consent in such situations is a familiar problem. After reviewing the legal and moral background for investigating DBS and the scientific difficulties DBS faces as a potential treatment for mental disorders, the article focuses on informed consent and makes two primary suggestions. The study of DBS may proceed, (...) but “hyper-disclosure” of the complexities should be required for competent subjects or proper surrogates if the candidate is not competent, and the most rigorous standard for competence should be employed. Throughout, neuromodesty and caution are urged. (shrink)

The profound changes in personality, mood, and other features of the self that neural interventions can induce can be disconcerting to patients, their families, and caregivers. In the neuroethical debate, these concerns are often addressed in the context of possible threats to the narrative self. In this paper, I argue that it is necessary to consider a dimension of impacts on the narrative self which has so far been neglected: neural interventions can lead to a loss of meaning of actions, (...) feelings, beliefs, and other intentional elements of our self-narratives. To uphold the coherence of the self-narrative, the changes induced by neural interventions need to be accounted for through explanations in intentional or biochemical terms. However, only an explanation including intentional states delivers the content to directly ascribe personal meaning, i.e., subjective value to events. Neural interventions can deprive events of meaning because they may favor a predominantly biochemical account. A loss of meaning is not inherently negative but it can be problematic, particularly if events are affected one was not prepared or willing to have stripped of meaning. The paper further examines what it is about neural interventions that impacts meaning by analyzing different methods. To which degree the pull towards a biochemical view occurs depends on the characteristics of the neural intervention. By comparing Deep Brain Stimulation, Prozac, Ritalin, psychedelics, and psychotherapy, the paper identifies some main factors: the rate of change, the transparency of the causal chain, the involvement of the patient, and the presence of an acute phenomenological experience. (shrink)

The potential of memory modification techniques (MMTs) has raised concerns and sparked a debate in neuroethics, particularly in the context of identity and authenticity. This paper addresses the question whether and how MMTs influence authenticity. I proceed by drawing two distinctions within the received views on authenticity. From this, I conclude that an analysis of MMTs based on a dual-basis, process view of authenticity is warranted, which implies that the influence of MMTs on authenticity crucially depends on the specifics of (...) how memory modification would eventually work. Therefore, I continue with a systematic analysis of possible properties of MMTs in which I distinguish between the dimensions of memories and the kinds of experiences that can be modified as well as the properties of the process of memory modification. The impact of MMTs on authenticity is analyzed regarding the possible properties of MMTs and based on a narrative approach to authenticity which fulfills the requirements of a dual-basis, process view of authenticity. Lastly, I explore the potential of MMTs to shift the balance between self-discovery and self-creation within authenticity and thereby alter the concept itself as well as the value of authenticity. (shrink)

Can Artificial Intelligence be more effective than human instruction for the moral enhancement of people? The author argues that it only would be if the use of this technology were aimed at increasing the individual's capacity to reflectively decide for themselves, rather than at directly influencing behaviour. To support this, it is shown how a disregard for personal autonomy, in particular, invalidates the main proposals for applying new technologies, both biomedical and AI-based, to moral enhancement. As an alternative to these (...) proposals, this article proposes a virtual assistant that, through dialogue, neutrality and virtual reality technologies, can teach users to make better moral decisions on their own. The author concludes that, as long as certain precautions are taken in its design, such an assistant could do this better than a human instructor adopting the same educational methodology. (shrink)

In this article, I explore select case studies of Parkinson patients treated with deep brain stimulation in light of the notions of alienation and authenticity. While the literature on DBS has so far neglected the issues of authenticity and alienation, I argue that interpreting these cases in terms of these concepts raises new issues for not only the philosophical discussion of neuro-ethics of DBS, but also for the psychological and medical approach to patients under DBS. In particular, I suggest that (...) the experience of alienation and authenticity varies from patient to patient with DBS. For some, alienation can be brought about by neurointerventions because patients no longer feel like themselves. But, on the other hand, it seems alienation can also be cured by DBS as other patients experience their state of mind as authentic under treatment and retrospectively regard their former lives without stimulation as alienated. I argue that we must do further research on the relevance of authenticity and alienation to patients treated with DBS in order to gain a deeper philosophical understanding, and to develop the best evaluative criterion for the behavior of DBS patients. (shrink)

While deep brain stimulation (DBS) for patients with Parkinson's disease has typically raised ethical questions about autonomy, accountability and personal identity, recent research indicates that we need to begin taking into account issues surrounding the patients’ feelings of authenticity and alienation as well. In order to bring out the relevance of this dimension to ethical considerations of DBS, I analyse a recent case study of a Dutch patient who, as a result of DBS, faced a dilemma between autonomy and authenticity. (...) This case study is meant to point out the normatively meaningful tension patients under DBS experience between authenticity and autonomy. (shrink)

Medical devices are often referred to as being invasive or non-invasive. Though invasiveness is relevant, and central, to how devices are understood and regarded in medicine and bioethics, a consensus concept or definition of invasiveness is lacking. To begin to address this problem, this essay explores four possible descriptive meanings of invasiveness: how devices are introduced to the body, where they are located in the body, whether they are foreign to the body, and how they change the body. An argument (...) is offered that invasiveness is not purely descriptive, but implicates normative concepts of danger, intrusion, and disruption. In light of this, a proposal is offered for how to understand use of the concept of invasiveness in discussions of medical devices. (shrink)

In this paper, I discuss whether it is ever morally permissible to diminish the cognitive abilities or capacities of some cognitively gifted offenders whose ability to commit their crimes successfully relies on them possessing these abilities or capacities. I suggest that, given such cognitive diminishments may prevent such offenders from re-offending and causing others considerable harm, this provides us with at least one good moral reason in favour of employing them. After setting out more clearly what cognitive diminishment may consist (...) of, I then critically discuss variations of four plausible arguments against a proposal of using them on cognitive gifted offenders related to autonomy, harm, narrative identity, and a right to mental self-determination. I argue that none of these concerns should have us reject the use of cognitive diminishments. (shrink)

In "Neurotechnologies, Relational Autonomy, and Authenticity," Mary Walker and Catriona Mackenzie engage with discourses surrounding the morality of neurotechnologies, arguing that these debates have been largely mistaken in their focus on worries about the effects of emerging technologies on human authenticity. They offer an alternative, autonomy-centered approach that problematizes concerns about authenticity as necessarily "essentialist or existentialist views of the self" that "transcends socialization". Instead, they suggest that, although authenticity is a condition for self-governance, autonomy itself is the more helpful (...) way to frame current debates about neurotechnologies.The goals of their... (shrink)

In this article, we explore how deep brain stimulation (DBS) devices designed to “close the loop”—to automatically adjust stimulation levels based on computational algorithms—may risk taking the individual agent “out of the loop” of control in areas where (at least apparent) conscious control is a hallmark of our agency. This is of particular concern in the area of psychiatric disorders, where closed-loop DBS is attracting increasing attention as a therapy. Using a relational model of identity and agency, we consider whether (...) DBS designed for psychiatric regulation may require special attention to agency. To do this, we draw on philosophical work on relational identity and agency, connecting it with reports from people using first-generation DBS devices for depression and obsessive-compulsive disorder. We suggest a way to extend a notion of relational agency to encompass neural devices. (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)

This paper explores the impacts of neurological intervention on selfhood with reference to recipients’ claims about changes to their self-understanding following Deep Brain Stimulation for treatment of Parkinson’s Disease. In the neuroethics literature, patients’ claims such as: “I don’t feel like myself anymore” and “I feel like a machine”, are often understood as expressing threats to identity. In this paper I argue that framing debates in terms of a possible threat to identity—whether for or against the proposition, is mistaken and (...) occludes what is ethically salient in changes from DBS. Rather, by adopting a relational narrative approach to identity and autonomy, I show that the ethically salient issue from DBS is impacts on autonomous agency—whether one’s actions and beliefs are one’s own, and how DBS may hinder, or foster, embodied, relational autonomy competences. This approach recognizes that if sufficiently significant, impacts on autonomy competences may pose a threat to one’s ability to contribute to the process of authoring one’s own life and so pose a threat to identity formation. I argue this approach resolves the confusion in the literature about whether and how DBS threatens identity and provides a complex picture of how DBS may affect selfhood by disrupting narrative identity formation and revision, distorting agency and/or undermining autonomy. (shrink)

The use of brain technology that contributes to psychological changes has spurred a debate about personal identity. Some argue that neurotechnology does not undermine personal continuity (Levy, 2011) while others argue that it does (Kreitmair, 2019; Schechtman, 2010). To make these assessments, commentators fail to identify psychological changes that cause personal discontinuity. In this paper, I present a view that identifies personal continuity with the maintenance of a self-concept. I argue that a concept of self requires the ability to self-ascribe (...) physical and psychological features and that the diachronic self emerges with self-ascriptions of features that require endurance over time. I maintain that an adequate concept of self does not depend on the maintenance of any particular combination of self-ascriptions and that it can be maintained despite even significant changes in psychological or physical traits. Finally, I apply the self-concept view to identify changes that can result in discontinuity of self. (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)

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)

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

Questions about the nature of self and self-consciousness are closely aligned with questions about the nature of autonomy. These concepts have deep roots in traditional philosophical discussions that concern metaphysics, epistemology and ethics. They also have direct relevance to practical considerations about informed consent in medical contexts. In this paper, with reference to understanding specific side effects of deep brain stimulation treatment in cases of, for example, Parkinson’s Disease, Obsessive Compulsive Disorder, and Major Depressive Disorder, I’ll argue that it is (...) best to frame discussions of informed consent in terms of relational autonomy and a pattern theory of self. (shrink)

One of the reasons why moral enhancement may be controversial, is because the advantages of moral enhancement may fall upon society rather than on those who are enhanced. If directed at individuals with certain counter-moral traits it may have direct societal benefits by lowering immoral behavior and increasing public safety, but it is not directly clear if this also benefits the individual in question. In this paper, we will discuss what we consider to be moral enhancement, how different means may (...) be used to achieve it and whether the means we employ to reach moral enhancement matter morally. Are certain means to achieve moral enhancement wrong in themselves? Are certain means to achieve moral enhancement better than others, and if so, why? More specifically, we will investigate whether the difference between direct and indirect moral enhancement matters morally. Is it the case that indirect means are morally preferable to direct means of moral enhancement and can we indeed pinpoint relevant intrinsic, moral differences between both? We argue that the distinction between direct and indirect means is indeed morally relevant, but only insofar as it tracks an underlying distinction between active and passive interventions. Although passive interventions can be ethical provided specific safeguards are put in place, these interventions exhibit a greater potential to compromise autonomy and disrupt identity. (shrink)

Neuromodulation and narrative identity: the importance of relational autonomyIn this paper, I discuss the impact of psychological and relational changes after neuromodulation for movement- and psychiatric disorders and the need to adequately address the possibility of such changes in clinical contexts. Based on ), ) and ), I outline a relational narrative identity perspective that can inform and support medical-ethical decisions. The narrative identity theory by Marya Schechtman in combination with a focus on the relational aspects that impact and constitute (...) our identity, highlights the need to identify post-interventional identity changes both from the perspective of the patient, his or her family and loved ones and the medical team. I argue that a thorough informed consent process pre- and post-intervention and adequate psychological counseling allows for such identification and a step by step monitoring and guiding of the patient in this process. From a relational narrative perspective, neuromodulation does not by default pose a threat to our identity. However, this perspective highlights the need to take the relational autonomy of patients seriously and provide a substantial informed consent procedure and adequate psychological counseling. (shrink)

This is the second paper in a two-part series describing subject and family perspectives from the CENTURY-S (CENtral Thalamic Deep Brain Stimulation for the Treatment of Traumatic Brain InjURY-Safety) first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury (msTBI). To participate, subjects were independently assessed to formally establish decision-making capacity to provide voluntary informed consent. Here, we report on post-operative interviews conducted after a successful trial of thalamic stimulation. All five msTBI subjects met (...) a pre-selected primary endpoint of at least a 10% improvement in completion time on Trail-Making-Test Part B, a marker of executive function. We describe narrative responses of subjects and family members, refracted against that success. Interviews following surgery and the stimulation trial revealed the challenge of adaptation to improvements in cognitive function and emotional regulation as well as altered (and restored) relationships and family dynamics. These improvements exposed barriers to social reintegration made relevant by recoveries once thought inconceivable. The study’s success sparked concerns about post-trial access to implanted devices, financing of device maintenance, battery replacement, and on-going care. Most subjects and families identified the need for supportive counseling to adapt to the new trajectory of their lives. (shrink)

The article proposes a theoretical model to account for changes in self due to Deep Brain Stimulation. First, we argue that most existing models postulate a very narrow conception of self, and thus fail to capture the full range of potentially relevant DBS-induced changes. Second, building on previous work by Shaun Gallagher, we propose a modified ‘pattern-theory of self’, which provides a richer picture of the possible consequences of DBS treatment.

Mecacci and Haselager's (2014) proposal is to reduce maladaptation after DBS treatment by revising the patient's conceptual scheme of the self. We are sympathetic to such an approach, but we want t...

Background: Psychiatric interventions are a contested area in medicine, not only because of their history of abuses, but also because their therapeutic goal is to affect emotions, thoughts, beliefs...

Deep Brain Stimulation is an FDA-approved treatment for the symptoms of Parkinson's disease, essential tremor, dystonia, and epilepsy—with experimental use for mood disorders. DBS systems consist of a signal generator, typically implanted in the user's chest, that sends impulses to electrodes implanted in select areas of the user's brain. These signals change the activity of areas of the brain associated with unwanted symptoms. Several research groups have begun trials to use DBS as a treatment for psychiatric disorders. DBS, however, comes (...) with a... (shrink)

Animal models are used in experiments in the behavioural neurosciences that aim to contribute to the prevention and treatment of cognitive and affective disorders in human beings, such as anxiety and depression. Ironically, those animals that are likely to be the best models for psychopathology are also likely to be considered the ones that are most morally problematic to use, if it seems probable that (and if indeed they are initially selected as models because) they have experiences that are similar (...) to human experiences that we have strong reasons to avoid causing, and indeed aim to alleviate (such as pain, anxiety or sadness). In this paper, against the background of contemporary discussions in animal ethics and the philosophy of animal minds, we discuss the views that it is morally permissible to use animals in these kinds of experiments, and that it is better to use less cognitively complex animals (such as zebrafish) than more complex animals (such as dogs). First, we criticise some justifications for the claim that human beings and more complex animals have higher moral status. We argue that contemporary approaches that attribute equal moral status to all beings that are capable of conscious strivings (e.g. avoiding pain and anxiety; aiming to eat and play) are based on more plausible assumptions. Second, we argue that it is problematic to assume that less cognitively complex animals have a lesser sensory and emotional experience than more complex beings across the board. In specific cases, there might be good reasons to assume that more complex beings would be harmed more by a specific physical or environmental intervention, but it might also be that they sometimes are harmed less because of a better ability to cope. Determining whether a specific experiment is justified is therefore a complex issue. Our aim in this chapter is to stimulate further reflection on these common assumptions behind the use of animal models for psychopathologies. In order to be able to draw more definite conclusions, more research will have to be done on the influence of cognitive complexity on the experience of (human and non-human) animals. (shrink)

ABSTRACT This paper investigates from a phenomenological perspective the origins of self-illness ambiguity. Drawing on phenomenological theories of affectivity and selfhood, I argue that, as a phenomenon which concerns primarily the ‘personal self’, self-illness ambiguity is dependent on distinct alterations of affective background orientations. I start by illustrating how personhood is anchored in the experience of a specific set of non-intentional affects – i.e. moods or existential feelings – alterations of which are often present in mental ill-health. Also through the (...) exploration of the phenomenology of acute and long-term anxiety, I suggest that self-illness ambiguity originates in the presence of moods or existential feelings that are in tension with the ones that structure the person’s experience prior to the onset of the illness or when its symptoms are not experienced. More specifically, I claim that due to their ability to ‘block’ or ‘suspend’ some of the person’s affective and cognitive responses, such affective orientations may unsettle one’s self-defining evaluative perspective, leading to uncertainty and doubting about one’s personal self. (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)

Deep brain stimulation (DBS) uses electrodes implanted in the brain to modulate dysregulated brain activity related to a variety of neurological and psychiatric conditions. A number of people who use DBS have reported changes that affect their sense of self. In the neuroethics literature, there has been significant debate over the exact nature of these changes. More recently, there have been suggestions that this debate is overblown and detracts from clinically-relevant ways of understanding these effects of DBS. In this paper, (...) we offer an alternative approach to understanding the effects of DBS on the self, drawing on John Sadler’s work on self-illness ambiguity. We argue that self-illness ambiguity is a complex concept, with at least three different aspects, and that each of the three aspects we identify also characterizes one kind of DBS-related change. Our analysis also suggests ways of helping patients to adjust to life as a DBS user. (shrink)