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)

Background The rise of a new generation of intelligent neuroprostheses, brain-computer interfaces (BCI) and adaptive closed-loop brain stimulation devices hastens the clinical deployment of neurotechnologies to treat neurological and neuropsychiatric disorders. However, it remains unclear how these nascent technologies may impact the subjective experience of their users. To inform this debate, it is crucial to have a solid understanding how more established current technologies already affect their users. In recent years, researchers have used qualitative research methods to explore the subjective (...) experience of individuals who become users of clinical neurotechnology. Yet, a synthesis of these more recent findings focusing on qualitative methods is still lacking. Methods To address this gap in the literature, we systematically searched five databases for original research articles that investigated subjective experiences of persons using or receiving neuroprosthetics, BCIs or neuromodulation with qualitative interviews and raised normative questions. Results 36 research articles were included and analysed using qualitative content analysis. Our findings synthesise the current scientific literature and reveal a pronounced focus on usability and other technical aspects of user experience. In parallel, they highlight a relative neglect of considerations regarding agency, self-perception, personal identity and subjective experience. Conclusions Our synthesis of the existing qualitative literature on clinical neurotechnology highlights the need to expand the current methodological focus as to investigate also non-technical aspects of user experience. Given the critical role considerations of agency, self-perception and personal identity play in assessing the ethical and legal significance of these technologies, our findings reveal a critical gap in the existing literature. This review provides a comprehensive synthesis of the current qualitative research landscape on neurotechnology and the limitations thereof. These findings can inform researchers on how to study the subjective experience of neurotechnology users more holistically and build patient-centred neurotechnology. (shrink)

Cervical spinal cord injuries often lead to loss of motor function in both hands and legs, limiting autonomy and quality of life. While it was shown that unilateral hand function can be restored after SCI using a hybrid electroencephalography/electrooculography brain/neural hand exoskeleton, it remained unclear whether such hybrid paradigm also could be used for operating two hand exoskeletons, e.g., in the context of bimanual tasks such as eating with fork and knife. To test whether EEG/EOG signals allow for fluent and (...) reliable as well as safe and user-friendly bilateral B/NHE control, eight healthy participants as well as four chronic tetraplegics performed a complex sequence of EEG-controlled bilateral grasping and EOG-controlled releasing motions of two exoskeletons visually presented on a screen. A novel EOG command performed by prolonged horizontal eye movements to the left or right was introduced as a reliable switch to activate either the left or right exoskeleton. Fluent EEG control was defined as average “time to initialize” grasping motions below 3 s. Reliable EEG control was assumed when classification accuracy exceeded 80%. Safety was defined as “time to stop” all unintended grasping motions within 2 s. After the experiment, tetraplegics were asked to rate the user-friendliness of bilateral B/NHE control using Likert scales. Average TTI and accuracy of EEG-controlled operations ranged at 2.14 ± 0.66 s and 85.89 ± 15.81% across healthy participants and at 1.90 ± 0.97 s and 81.25 ± 16.99% across tetraplegics. Except for one tetraplegic, all participants met the safety requirements. With 88 ± 11% of the maximum achievable score, tetraplegics rated the control paradigm as user-friendly and reliable. These results suggest that hybrid EEG/EOG B/NHE control of two assistive devices is feasible and safe, paving the way to test this paradigm in larger clinical trials performing bimanual tasks in everyday life environments. (shrink)