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.

Consciousness defines us as persons. It allows us to have both pleasurable and painful experiences. I present four neurological conditions in the clinical setting to explore how consciousness can be beneficial or harmful to patients: intraoperative awareness, prolonged disorders of consciousness, locked-in syndrome, and the effects of narcotics and sedation on terminally ill patients. The ethical significance of consciousness for patients in these conditions depends on two factors: the content of one’s experience and whether one can report this content to others. I argue that the value or disvalue of phenomenal consciousness, what it is like to be aware, may depend on its relation to access consciousness, the ability to report or communicate the content of awareness. Phenomenal consciousness can have disvalue when one wants or expects to be unconscious. It can also have disvalue in the absence of access consciousness because it can allow the patient to experience pain and suffer. Technology that enabled neurologically compromised patients to reliably communicate their experience and wishes could benefit and prevent harm to them. More generally, the neurological conditions I discuss raise the question of when and in what respects consciousness is preferable to unconsciousness.

Locked-in syndrome (LIS) is the combination of quadriplegia and anarthria (inability to speak), with the preservation of consciousness. The majority of cases are caused by basilar artery occlusion leading to brainstem infarction in the ventral pons, yet numerous other etiologies have been described. The diagnosis of LIS is completely dependent on the physician's ability to know that these manifestations originate in the brainstem and the posterior circulation that supplies it. This knowledge hinges on the ability of the examining physician to conduct a rapid, yet appropriately thorough neurologic examination. With recent advances in interventional neuroradiology leading to improved patient outcomes, LIS has evolved into a critical, time-dependent diagnosis. Herein, we present the case of a male patient who initially presented to the emergency department of a community hospital with coma of unknown cause. By presenting this case and focusing on the importance of the occulomotor exam, we hope to help in the rapid identification and treatment of patients with LIS in the emergency room and avoid outcomes similar to that of our patient.