In this article, we sketch how theoretical neuroethics can clarify the concept of autonomy. We hope that this can both serve as a model for the conceptual clarification of other components of PIAAAS and contribute to the development of the empirical measures that Gilbert and colleagues [1] propose.

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)

This paper looks to phenomenology and enactive cognition in order to shed light on the self and sense of self of patients with locked-in syndrome. It critically discusses the concept of the minimal self, both in its phenomenological and ontological dimension. Ontologically speaking, the self is considered to be equal to a person’s sensorimotor embodiment. This bodily self also grounds the minimal sense of self as being a distinct experiential subject. The view from the minimal bodily self presupposes that sociality (...) comes after the self, or that in other words, the essence of self remains independent of our social interactions and relations. In this paper, I rely on the idea of enactive autonomy and Heidegger’s and Merleau-Ponty’s views of human existence as primordially social, to argue for the contrary. The self is fundamentally relational and this is also reflected at the level of the subjective experience of being a self. I indicate how a strong relational view of selfhood can serve as a preliminary heuristic to make sense of the situation of the patient with LIS and conclude with some practical implications concerning patient autonomy, our ethical responsibility toward the patient, and the possibilities for improving the life of patients with LIS. (shrink)

The history of brain-computer interfaces developed from a mere idea in the days of early digital technology to today’s highly sophisticated approaches for signal detection, recording, and analysis. In the 1960s, electroencephalography was tied to the laboratory due to equipment and recording requirements. Today, amplifiers exist that are built in the electrode cap and are so resistant to movement artefacts that data collection in the field is no longer a critical issue. Within 60 years, the field has moved from simple (...) and artefact-sensitive EEG recording to making real the vision of brain-computer communication. In the last 40 years, direct brain-computer interaction went from simple communication programs to sophisticated BCI-controlled applications. In the past two decades, much research was conducted with locked-in individuals, and since the 2010s, independent home use by exemplary patients has been demonstrated. In these patients with locked-in syndrome, BCI were installed at their home and long-term usage was established, resulting in increased quality of life. Maintaining communication in disorders leading to LIS contributes significantly to the patients’ sense of being full persons. BCI as an assistive technology will likely be perceived as integral part of the self: insofar as it can prevent total loss of communication and the ensuing social isolation, it enables essential conditions for the subjective and intersubjective experience of personhood. (shrink)

A brain-computer interface technology that can decode the neural signals associated with attempted but unarticulated speech could offer a future efficient means of communication for people with severe motor impairments. Recent demonstrations have validated this approach. Here we assume that it will be possible in future to decode imagined (i.e., attempted but unarticulated) speech in people with severe motor impairments, and we consider the characteristics that could maximize the social utility of a BCI for communication. As a social interaction, communication (...) involves the needs and goals of both speaker and listener, particularly in contexts that have significant potential consequences. We explore three high-consequence legal situations in which neurally-decoded speech could have implications:Testimony, where decoded speech is used as evidence;Consent and Capacity, where it may be used as a means of agency and participation such as consent to medical treatment; andHarm, where such communications may be networked or may cause harm to others. We then illustrate how design choices might impact the social and legal acceptability of these technologies. (shrink)