There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (shrink)

Brain–Computer Interface research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design. The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers’ experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain (...) a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is “good enough” for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering. (shrink)

A brain-computer interface is a rapidly evolving neurotechnology connecting the human brain with a computer. In its classic form, brain activity is recorded and used to control external devices like protheses or wheelchairs. Thus, BCI users act with the power of their thoughts. While the initial development has focused on medical uses of BCIs, non-medical applications have recently been gaining more attention, for example in automobiles, airplanes, and the entertainment context. However, the attitudes of the general public towards BCIs have (...) hardly been explored. Among the general population in Germany aged 18–65 years, a representative online survey with 20 items was conducted in summer 2018 and analysed by descriptive statistics. The survey assessed: affinity for technology; previous knowledge and experience concerning BCIs; the attitude towards ethical, social and legal implications of BCI use and demographic information. Our results indicate that BCIs are a unique and puzzling way of human–machine interaction. The findings reveal a positive view and high level of trust in BCIs on the one hand but on the other hand a wide range of ethical and anthropological concerns. Agency and responsibility were clearly attributed to the BCI user. The participants’ opinions were divided regarding the impact BCIs have on humankind. In summary, a high level of ambivalence regarding BCIs was found. We suggest better information of the public and the promotion of public deliberation about BCIs in order to ensure responsible development and application of this potentially disruptive technology. (shrink)

Invasive neural devices offer novel prospects for motor rehabilitation on different levels of agentive behavior. From a functional perspective, they interact with, support, or enable human intentional actions in such a way that movement capabilities are regained. However, when there is a technical malfunction resulting in an unintended movement, the complexity of the relationship between the end user and the device sometimes makes it difficult to determine who is responsible for the outcome – a circumstance that has been coined as (...) “responsibility gap” in the literature. So far, recent accounts frame this issue around the theme of control but more work is needed to explore the complicated terrain of assigning responsibility for neural device-mediated actions from this control perspective. This paper aims at contributing to this tendency by offering more fine-grained distinctions of how that control capacity is facilitated by the machine and how it can be exercised by the end user. This results in a novel framework that depicts an in-depth exploration of the control aspect of responsibility in a way that incorporates the diversity of relationships between neurotechnologies, the various conditions they treat, and the individual end user’s experience. (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)

Since the 1960s, scientists, engineers, and healthcare professionals have developed brain–computer interface (BCI) technologies, connecting the user’s brain activity to communication or motor devices. This new technology has also captured the imagination of publics, industry, and ethicists. Academic ethics has highlighted the ethical challenges of BCIs, although these conclusions often rely on speculative or conceptual methods rather than empirical evidence or public engagement. From a social science or empirical ethics perspective, this tendency could be considered problematic and even technocratic because (...) of its disconnect from publics. In response, our trinational survey (Germany, Canada, and Spain) reports public attitudes toward BCIs (N = 1,403) on ethical issues that were carefully derived from academic ethics literature. The results show moderately high levels of concern toward agent-related issues (e.g., changing the user’s self) and consequence-related issues (e.g., new forms of hacking). Both facets of concern were higher among respondents who reported as female or as religious, while education, age, own and peer disability, and country of residence were associated with either agent-related or consequence-related concerns. These findings provide a first look at BCI attitudes across three national contexts, suggesting that the language and content of academic BCI ethics may resonate with some publics and their values. (shrink)

In this article, we explore the role that art can play in ethical reflection on risky and controversial technologies. New technologies often give rise to societal controversies about their potential risks and benefits. Over the last decades, social scientists, psychologists, and philosophers have criticized quantitative approaches to risk on the grounds that they oversimplify its societal and ethical implications. There is broad consensus amongst these scholars that stakeholders and their values and concerns should be included in decision-making about technological risks. (...) It has also been argued that the emotional responses of people can shed important light on the ethical aspects of risk and uncertainty. However, people’s emotions can be narrowly focused and biased. This article therefore assesses the role that technology-inspired artworks can play in overcoming such biases, by challenging our imagination and providing us with different perspectives on possible technological developments and their implications for society. Philosophers have not yet studied such artworks, so this constitutes an entirely new field of research for scholars of risk and moral theory. In particular, we focus on the case of BNCI technologies and related artworks. These technologies and artworks touch on questions of what it means to be human, thereby raising profound ethical and philosophical challenges. We discuss the experiences of artists, scientists, and engineers who are directly involved with BNCI technologies, and who were interviewed during a Hackathon at Amsterdam’s Waag Society in June 2016. Their views are analyzed in light of philosophical and aesthetic theories, which allows us to consider relevant ethical and conceptual issues as well as topics for further investigation. (shrink)

This article provides a conceptual and normative framework through which we may understand the potentially ethically significant roles that information generated by neurotechnologies about our brains and minds may play in our construction of our identities. Neuroethics debates currently focus disproportionately on the ways that third parties may (ab)use these kinds of information. These debates occlude interests we may have in whether and how we ourselves encounter information about our own brains and minds. This gap is not yet adequately addressed (...) by most allusions in the literature to potential identity impacts. These lack the requisite conceptual or normative foundations to explain why we should be concerned about such effects or how they might be addressed. This article seeks to fill this gap by presenting a normative account of identity as constituted by embodied self-narratives. It proposes that information generated by neurotechnologies can play significant content-supplying and interpretive roles in our construction of our self-narratives. It argues, to the extent that these roles support and detract from the coherence and inhabitability of these narratives, access to information about our brains and minds engages non-trivial identity-related interests. These claims are illustrated using examples drawn from empirical literature reporting reactions to information generated by implantable predictive BCIs and psychiatric neuroimaging. The article concludes by highlighting ways in which information generated by neurotechnologies might be governed so as to protect information subjects’ interests in developing and inhabiting their own identities. (shrink)

Brain Computer Interface (BCI) technology offers potential for human augmentation in areas ranging from communication to home automation, leisure and gaming. This paper addresses ethical challenges associated with the wider scale deployment of BCI as an assistive technology by documenting issues associated with the development of non-invasive BCI technology. Laboratory testing is normally carried out with volunteers but further testing with subjects, who may be in vulnerable groups is often needed to improve system operation. BCI development is technically complex, sometimes (...) requiring lengthy recording sessions to achieve the necessary personalisation of the paradigms, and this can present ethical challenges that vary depending on the subject group. The paper contributes to the on-going ethical discussion surrounding the deployment BCI outside the specialist laboratory and suggests some tentative guidelines for BCI research teams, appropriate to those deploying the technology, derived from experience on a multisite project. Any tension between deployment and technical progress must be managed by a formal process within a multidisciplinary consortium. (shrink)

The rapid expansion of research on Brain-Computer Interfaces is not only due to the promising solutions offered for persons with physical impairments. There is also a heightened need for understanding BCIs due to the challenges regarding ethics presented by new technology, especially in its impact on the relationship between man and machine. Here we endeavor to present a scoping review of current studies in the field to gain insight into the complexity of BCI use. By examining studies related to BCIs (...) that employ social research methods, we seek to demonstrate the multitude of approaches and concerns from various angles in considering the social and human impact of BCI technology. For this scoping review of research on BCIs’ social and ethical implications, we systematically analyzed six databases, encompassing the fields of medicine, psychology, and the social sciences, in order to identify empirical studies on BCIs. The search yielded 73 publications that employ quantitative, qualitative, or mixed methods. Of the 73 publications, 71 studies address the user perspective. Some studies extend to consideration of other BCI stakeholders such as medical technology experts, caregivers, or health care professionals. The majority of the studies employ quantitative methods. Recurring themes across the studies examined were general user opinion towards BCI, central technical or social issues reported, requests/demands made by users of the technology, the potential/future of BCIs, and ethical aspects of BCIs. Our findings indicate that while technical aspects of BCIs such as usability or feasibility are being studied extensively, comparatively little in-depth research has been done on the self-image and self-experience of the BCI user. In general there is also a lack of focus or examination of the caregiver’s perspective. (shrink)

Abstract:Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. In addition (...) to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS. (shrink)

Brain–computer interfacing (BCI) aims at directly capturing brain activity in order to enable a user to drive an application such as a wheelchair without using peripheral neural or motor systems. Low signal to noise ratio’s, low processing speed, and huge intra- and inter-subject variability currently call for the addition of intelligence to the applications, in order to compensate for errors in the production and/or the decoding of brain signals. However, the combination of minds and machines through BCI’s and intelligent devices (...) (IDs) can affect a user’s sense of agency. Particularly confusing cases can arise when the behavioral control switches implicitly from user to ID. I will suggest that in such situations users may be insecure about the extent to which the resulting behavior, whether successful or unsuccessful, is genuinely their own. Hence, while performing an action, a user of a BCI–ID may be uncertain about being the agent of the act. Several cases will be examined and some implications for (legal) responsibility (e.g. establishing the presence of a ‘guilty mind’) are discussed. (shrink)

In this paper, the results of a pilot interview study with 19 subjects participating in an EEG-based non-invasive brain–computer interface (BCI) research study on stroke rehabilitation and assistive technology and of a survey among 17 BCI professionals are presented and discussed in the light of ethical, legal, and social issues in research with human subjects. Most of the users were content with study participation and felt well informed. Negative aspects reported include the long and cumbersome preparation procedure, discomfort with the (...) cap and the wet electrodes, problems concerning BCI control, and strains during the training sessions. In addition, some users reflected on issues concerning system security. When asked for morally problematic issues in this field of non-invasive BCI research, the BCI professionals stressed the need for correct information transfer, the obligation to avoid unrealistic expectations in study participants, the selection of study participants, benefits and strains of participation, BCI illiteracy, the possibility of detrimental brain modifications induced by BCI use, and problems that may arise at the end of the trials. Furthermore, privacy issues were raised. Based on the results obtained, psychosocial and ethical aspects of EEG-based non-invasive BCI research are discussed and possible implications for future research addressed. (shrink)

While new generations of implantable brain computer interface devices are being developed, evidence in the literature about their impact on the patient experience is lagging. In this article, we address this knowledge gap by analysing data from the first-in-human clinical trial to study patients with implanted BCI advisory devices. We explored perceptions of self-change across six patients who volunteered to be implanted with artificially intelligent BCI devices. We used qualitative methodological tools grounded in phenomenology to conduct in-depth, semi-structured interviews. Results (...) show that, on the one hand, BCIs can positively increase a sense of the self and control; on the other hand, they can induce radical distress, feelings of loss of control, and a rupture of patient identity. We conclude by offering suggestions for the proactive creation of preparedness protocols specific to intelligent—predictive and advisory—BCI technologies essential to prevent potential iatrogenic harms. (shrink)

Novel neurotechnologies like deep brain stimulation and brain-computer interfaces promise clinical benefits for severely suffering patients. Nevertheless, such electroceuticals raise several ethical issues on different levels: while on the level of clinical neuroethics issues with direct relevance for diagnosis and treatment have to be discussed, on the level of research neuroethics questions regarding research and development of these technological devices like investigating new targets and different diseases as well as thorough inclusion criteria are dealt with. On the level of theoretical (...) neuroethics more general questions are examined including anthropological considerations on “normal” human functioning as well as implications on personality, personal identity and authenticity. This paper presents a brief review on ethical issues of deep brain stimulation and brain computer interfacing and simultaneously introduces to this themed issue with thirteen contributions dealing from different perspectives with ethical implications of electroceuticals for the human brain. (shrink)

Brain-Computer Interface is a set of technologies that are of increasing interest to researchers. BCI has been proposed as assistive technology for individuals who are non-communicative or paralyzed, such as those with amyotrophic lateral sclerosis or spinal cord injury. The technology has also been suggested for enhancement and entertainment uses, and there are companies currently marketing BCI devices for those purposes as well as health-related purposes. The unprecedented direct connection created by BCI between human brains and computer hardware raises various (...) ethical, social, and legal challenges that merit further examination and discussion. To identify and characterize the key issues associated with BCI use, we performed a scoping review of biomedical ethics literature, analyzing the ethics concerns cited across multiple disciplines, including philosophy and medicine. Based on this investigation, we report that BCI research and its potential translation to therapeutic intervention generate significant ethical, legal, and social concerns, notably with regards to personhood, stigma, autonomy, privacy, research ethics, safety, responsibility, and justice. Our review of the literature determined, furthermore, that while these issues have been enumerated extensively, few concrete recommendations have been expressed. We conclude that future research should focus on remedying a lack of practical solutions to the ethical challenges of BCI, alongside the collection of empirical data on the perspectives of the public, BCI users, and BCI researchers. (shrink)

Closed Loop medical devices such as Closed Loop Deep Brain Stimulation and Brain Computer Interface are some of the emerging neurotechnologies. New generations of implantable brain–computer interfaces have recently gained success in human clinical trials. These implants detect specific neuronal patterns and provide the subject with information to respond to these patterns. Further, Closed Loop brain devices give control to the subject so that he can respond and decide on a therapeutic goal. Although the implants have improved subjects’ quality of (...) life, their use has raised varied ethical concerns. The aim of this study is to provide an overview of the ethical implications specific to the therapeutic goals of closed loop brain implants. The authors analyze the related work qualitatively and quantitatively so as to help readers in understanding the various ethical implications of closed loop brain implants. (shrink)

New brain-computer interface and neuroimaging techniques are making differentiation less ambiguous and more accurate between unresponsive wakefulness syndrome patients and patients with higher cognitive function and awareness. As research into these areas continues to progress, new ethical issues will face physicians of patients suffering from total locked-in syndrome, characterized by complete loss of voluntary muscle control, with retention of cognitive function and awareness detectable only with neuroimaging and brain-computer interfaces. Physicians, researchers, ethicists and hospital ethics committees should be aware of (...) and prepared to handle ethical issues unique to these totally locked-in patients. Several thought experiments are discussed, to highlight potential ethical dilemmas surrounding surrogate decision-making, autonomy, end-of-life care, and pediatric care, which will be unique to total LIS patients. These, along with other ethical problems especially relevant to total LIS patients, merit further discussion among physicians, researchers, ethicists and hospital ethics committees, to facilitate consensus regarding these issues, and improve patient care. (shrink)

In this panel, we explore the future of value sensitive design (VSD). The stakes are high. Many in public and private sectors and in civil society are gradually realizing that taking our values seriously implies that we have to ensure that values effectively inform the design of technology which, in turn, shapes people’s lives. Value sensitive design offers a highly developed set of theory, tools, and methods to systematically do so.