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)

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)

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)

Many philosophers working on personal identity and ethics say that personal identity is constituted by stories: narratives people tell or would tell about their lives. Most of them also say that this is personal identity in the ‘characterization sense’, that it is the notion people in ordinary contexts are interested in, and that it raises the ‘characterization question’. I argue that these claims are inconsistent. Narrativists can avoid the incompatibility in one of two ways: They can concede that their view (...) is not about the constitution but the epistemology of personal identity. Or they can say that it is not about personal identity at all. (shrink)

Ethical evaluation of deep brain stimulation as a treatment for Parkinson’s disease is complicated by results that can be described as involving changes in the patient’s identity. The risk of becoming another person following surgery is alarming for patients, caregivers and clinicians alike. It is one of the most urgent conceptual and ethical problems facing deep brain stimulation in Parkinson’s disease at this time. In our paper we take issue with this problem on two accounts. First, we elucidate what is (...) meant by “becoming another person” from a conceptual point of view. After critically discussing two broad approaches we concentrate on the notion of “individual identity” which centers on the idea of “core attitudes”. Subsequently we discuss several approaches to determine what distinguishes core attitudes from those that are more peripheral. We argue for a “foundational-function model” highlighting the importance of specific dependency relations between these attitudes. Our second aim is to comment on the possibility to empirically measure changes in individual identity and argue that many of the instruments now commonly used in selecting and monitoring DBS-patients are inappropriate for this purpose. Future research in this area is advised combining a conceptual and an empirical approach as a basis of sound ethical appraisal. (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 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)

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)

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)

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)

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

Neural devices have the capacity to enable users to regain abilities lost due to disease or injury – for instance, a deep brain stimulator (DBS) that allows a person with Parkinson’s disease to regain the ability to fluently perform movements or a Brain Computer Interface (BCI) that enables a person with spinal cord injury to control a robotic arm. While users recognize and appreciate the technologies’ capacity to maintain or restore their capabilities, the neuroethics literature is replete with examples of (...) concerns expressed about agentive capacities: A perceived lack of control over the movement of a robotic arm might result in an altered sense of feeling responsible for that movement. Clinicians or researchers being able to record and access detailed information of a person’s brain might raise privacy concerns. A disconnect between previous, current, and future understandings of the self might result in a sense of alienation. The ability to receive and interpret sensory feedback might change whether someone trusts the implanted device or themselves. Inquiries into the nature of these concerns and how to mitigate them has produced scholarship that often emphasizes one issue – responsibility, privacy, authenticity, or trust – selectively. However, we believe that examining these ethical dimensions separately fails to capture a key aspect of the experience of living with a neural device. In exploring their interrelations, we argue that their mutual significance for neuroethical research can be adequately captured if they are described under a unified heading of agency. On these grounds, we propose an “Agency Map” which brings together the diverse neuroethical dimensions and their interrelations into a comprehensive framework. With this, we offer a theoretically-grounded approach to understanding how these various dimensions are interwoven in an individual’s experience of agency. (shrink)

Deep Brain Stimulation (DBS) is a treatment involving the implantation of electrodes into the brain. Presently, it is used for neurological disorders like Parkinson’s disease, but indications are expanding to psychiatric disorders such as depression, addiction and Obsessive Compulsive Disorder (OCD). Theoretically, it may be possible to use DBS for the enhancement of various mental functions. This article discusses a case of an OCD patient who felt very happy with the DBS treatment, even though her symptoms were not reduced. First, (...) it is explored if the argument that ‘doctors are not in the business of trading happiness’, as used by her psychiatrist to justify his discontinuation of the DBS treatment, holds. The relationship between enhancement and the goals of medicine is discussed and it is concluded that even though the goals of medicine do not set strict limits and may even include certain types of enhancement, there are some good reasons for limiting the kind of things doctors are required or allowed to do. Next, the case is discussed from the perspective of beneficence and autonomy. It is argued that making people feel good is not the same as enhancing their well-being and that it is unlikely—though not absolutely impossible—that the well-being of the happy OCD patient is really improved. Finally, some concerns regarding the autonomy of a request made under the influence of DBS treatment are considered. (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)

The success of deep brain stimulation (DBS) for movement disorders and the improved understanding of the neurobiologic and neuroanatomic bases of psychiatric diseases have led to proposals to expand current DBS applications. Recent preclinical and clinical work with Alzheimer's disease and obsessive-compulsive disorder, for example, supports the safety of stimulating regions in the hypothalamus and nucleus accumbens in humans. These regions are known to be involved in addiction and overeating associated with obesity. However, the use of DBS targeting these areas (...) as a treatment modality raises common ethical considerations, which include informed consent, coercion, enhancement, threat to personhood, and manipulation of the reward center. Pilot studies for both of these conditions are currently investigational. If these studies show promise, then there is a need to address the ethical concerns related to the initiation of clinical trials including the reliability of preclinical evidence, patient selection, study design, compensation for participation and injury, cost-effectiveness, and the need for long-term follow-up. Multidisciplinary teams are necessary for the ethical execution of such studies. In addition to establishing safety and efficacy, the consideration of these ethical issues is vital to the adoption of DBS as a treatment for these conditions. We offer suggestions about the pursuit of future clinical trials of DBS for the treatment of addiction and overeating associated with obesity and provide a framework for addressing ethical concerns related to treatment. (shrink)

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

In this paper, I explore the role that regret does and should play in medical decision-making. Specifically, I consider whether the possibility of a patient experiencing post-treatment regret is a good reason for a clinician to counsel against that treatment or to withhold it. Currently, the belief that a patient may experience post-treatment regret is sometimes taken as a sufficiently strong reason to withhold it, even when the patient makes an explicit, informed request. Relatedly, medical researchers and practitioners often understand (...) a patient’s post-treatment regret to be a significant problem, one that reveals a mistake or flaw in the decision-making process. Contrary to these views, I argue that the possibility of post-treatment regret is not necessarily a good reason for withholding the treatment. This claim is justified by appealing to respect for patient autonomy. Furthermore, there are occasions when the very reference to post-treatment regret during medical decision-making is inappropriate. This, I suggest, is the case when the decision concerns a “personally transformative treatment”. This is a treatment that alters a person’s identity. Because the treatment is transformative, neither clinicians nor the patient him/herself can ascertain whether post-treatment regret will occur. Consequently, I suggest, what matters in determining whether to offer a personally transformative treatment is whether the patient has sufficiently good reasons for wanting the treatment at the time the decision is made. What does not matter is how the patient may subsequently be changed by undergoing the treatment. (shrink)

Not too long ago, neurotechnology was the purview of the clinic and research. In 2011, researchers at Brown University succeeded for the first time in using an implanted sensor in the brain of a pa...

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)

Implantable brain–computer interface technology is an expanding area of engineering research now moving into clinical application. Ensuring meaningful informed consent in implantable BCI research is an ethical imperative. The emerging and rapidly evolving nature of implantable BCI research makes identification of risks, a critical component of informed consent, a challenge. In this paper, 6 core risk domains relevant to implantable BCI research are identified—short and long term safety, cognitive and communicative impairment, inappropriate expectations, involuntariness, affective impairment, and privacy and security. (...) Work in deep brain stimulation provides a useful starting point for understanding this core set of risks in implantable BCI. Three further risk domains—risks pertaining to identity, agency, and stigma—are identified. These risks are not typically part of formalized consent processes. It is important as informed consent practices are further developed for implantable BCI research that attention be paid not just to disclosing core research risks but exploring the meaning of BCI research with potential participants. (shrink)

Agency is talked about by many as something that people living with dementia lose, once they've lost much else—autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision‐making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in (...) agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia‐friendly environments. (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)

The introduction of new medical treatments based on invasive technologies has often been surrounded by both hopes and fears. Hope, since a new intervention can create new opportunities either in terms of providing a cure for the disease or impairment at hand; or as alleviation of symptoms. Fear, since an invasive treatment involving implanting a medical device can result in unknown complications such as hardware failure and undesirable medical consequences. However, hopes and fears may also arise due to the cultural (...) embeddedness of technology, where a therapy due to ethical, social, political and religious concerns could be perceived as either a blessing or a threat. While Deep Brain Stimulation (DBS) for treatment resistant depression (TRD) is still in its cradle, it is important to be proactive and try to scrutinize both surfacing hopes and fears. Patients will not benefit if a promising treatment is banned or avoided due to unfounded fears, nor will they benefit if DBS is used without scrutinizing the arguments which call for caution. Hence blind optimism is equally troublesome. We suggest that specificity, both in terms of a detailed account of relevant scientific concerns as well as ethical considerations, could be a way to analyse expressed concerns regarding DBS for TRD. This approach is particularly fruitful when applied to hopes and fears evoked by DBS for TRD, since it can reveal if our comprehension of DBS for TRD suffer from various biases which may remain unnoticed at first glance. We suggest that such biases exist, albeit a further analysis is needed to explore this issue in full. (shrink)

Do neurosurgical procedures ever result in the patient prior to the procedure not being identical with the individual who wakes up postsurgery in the hospital bed? We address this question by offering an analysis of the persistence of persons that emphasizes narrative, rather than numerical, identity. We argue that a narrative analysis carries the advantage of highlighting what matters to patients in their ordinary lives, explaining the varying degrees of persistence of personal identity, and enhancing our understanding of patients' experiences. (...) We illustrate these points in cases involving temporal lobectomy for treatment of refractory epilepsy and deep brain stimulation for refractory Parkinson's disease. (shrink)

We present a novel procedure to engage the public in ethical deliberations on the potential impacts of brain machine interface technology. We call this procedure a convergence seminar, a form of scenario-based group discussion that is founded on the idea of hypothetical retrospection. The theoretical background of this procedure and the results of five seminars are presented.

Brain machine interface (BMI) technology makes direct communication between the brain and a machine possible by means of electrodes. This paper reviews the existing and emerging technologies in this field and offers a systematic inquiry into the relevant ethical problems that are likely to emerge in the following decades.

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)

Novel neurotechnologies, like deep brain stimulation and brain‐computer interface, offer great hope for treating, curing, and preventing disease, but raise important questions about effects these devices may have on human identity, authenticity, and autonomy. After briefly assessing recent narrative work in these areas, we show that agency is a phenomenon key to all three goods and highlight the ways in which neural devices can help to draw attention to the relational nature of our agency. Drawing on insights from disability theory, (...) we argue that neural devices provide a kind of agential assistance, similar to that provided by caregivers, family, and others. As such, users and devices participate in a kind of co‐agency. We conclude by suggesting the need for developing relational agency‐competencies—skills for reflecting on the influence of devices on agency, for adapting to novel circumstances ushered in by devices, and for incorporating the feedback of loved ones and others about device effects on agency. (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)

Walter Freeman, the self styled neurosurgeon, became famous (or infamous) for psychosurgery. The operation of frontal leucotomy swept through the world (with Freeman himself performing something like 18,000 cases) but it has tainted the whole idea of psychosurgery down to the present era. Modes of psychosurgery such as Deep Brain Stimulation and other highly selective neurosurgical procedures for neurological and psychiatric conditions are in ever-increasing use in current practice. The new, more exciting techniques are based in a widely held philosophical (...) position on the relationship between the mind, brain and soul, which is the key to ethical debates in this area. Psychosurgery has always posed questions of responsibility, personality, character, identity, spirit, relationship, integrity, and human flourishing and they do not go away when we enter the brave new world of neuroethics and Deep Brain Stimulation. (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)

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

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.

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

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)

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)

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.

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.

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)

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)

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