Neuroprosthetic Speech: The Ethical Significance of Accuracy, Control and Pragmatics.

Neuroprosthetic speech devices are an emerging technology that can offer the possibility of communication to those who are unable to speak. Patients with 'locked in syndrome,' aphasia, or other such pathologies can use covert speech-vividly imagining saying something without actual vocalization-to trigger neural controlled systems capable of synthesizing the speech they would have spoken, but for their impairment.We provide an analysis of the mechanisms and outputs involved in speech mediated by neuroprosthetic devices. This analysis provides a framework for accounting for the ethical significance of accuracy, control, and pragmatic dimensions of prosthesis-mediated speech. We first examine what it means for the output of the device to be accurate, drawing a distinction between technical accuracy on the one hand and semantic accuracy on the other. These are conceptual notions of accuracy.Both technical and semantic accuracy of the device will be necessary (but not yet sufficient) for the user to have sufficient control over the device. Sufficient control is an ethical consideration: we place high value on being able to express ourselves when we want and how we want. Sufficient control of a neural speech prosthesis requires that a speaker can reliably use their speech apparatus as they want to, and can expect their speech to authentically represent them. We draw a distinction between two relevant features which bear on the question of whether the user has sufficient control: voluntariness of the speech and the authenticity of the speech. These can come apart: the user might involuntarily produce an authentic output (perhaps revealing private thoughts) or might voluntarily produce an inauthentic output (e.g., when the output is not semantically accurate). Finally, we consider the role of the interlocutor in interpreting the content and purpose of the communication.These three ethical dimensions raise philosophical questions about the nature of speech, the level of control required for communicative accuracy, and the nature of 'accuracy' with respect to both natural and prosthesis-mediated speech.

Ethical Considerations in Ending Exploratory Brain-Computer Interface Research Studies in Locked-in Syndrome.

Brain-computer interface (BCI) is a promising technology for restoring communication in individuals with locked-in syndrome (LIS). BCI technology offers a potential tool for individuals with impaired or absent means of effective communication to use brain activity to control an output device such as a computer keyboard. Exploratory studies of BCI devices for communication in people with LIS are underway. Research with individuals with LIS presents not only technological challenges, but ethical challenges as well. Whereas recent attention has been focused on ethical issues that arise at the initiation of studies, such as how to obtain valid consent, relatively little attention has been given to issues at the conclusion of studies. BCI research in LIS highlights one such challenge: How to decide when an exploratory BCI research study should end. In this article, we present the case of an individual with presumed LIS enrolled in an exploratory BCI study. We consider whether two common ethical frameworks for stopping randomized clinical trials-equipoise and nonexploitation-can be usefully applied to elucidating researcher obligations to end exploratory BCI research. We argue that neither framework is a good fit for exploratory BCI research. Instead, we apply recent work on clinician-researcher fiduciary obligations and in turn offer some preliminary recommendations for BCI researchers on how to end exploratory BCI studies.

Ethical aspects of brain computer interfaces: a scoping review.

BACKGROUND: Brain-Computer Interface (BCI) 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 (e.g., gaming) as well as health-related purposes (e.g., communication). 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Native voice, self-concept and the moral case for personalized voice technology.

Purpose (1) To explore the role of native voice and effects of voice loss on self-concept and identity, and survey the state of assistive voice technology; (2) to establish the moral case for developing personalized voice technology. Methods This narrative review examines published literature on the human significance of voice, the impact of voice loss on self-concept and identity, and the strengths and limitations of current voice technology. Based on the impact of voice loss on self and identity, and voice technology limitations, the moral case for personalized voice technology is developed. Results Given the richness of information conveyed by voice, loss of voice constrains expression of the self, but the full impact is poorly understood. Augmentative and alternative communication (AAC) devices facilitate communication but, despite advances in this field, voice output cannot yet express the unique nuances of individual voice. The ethical principles of autonomy, beneficence and equality of opportunity establish the moral responsibility to invest in accessible, cost-effective, personalized voice technology. Conclusions Although further research is needed to elucidate the full effects of voice loss on self-concept, identity and social functioning, current understanding of the profoundly negative impact of voice loss establishes the moral case for developing personalized voice technology. Implications for Rehabilitation Rehabilitation of voice-disordered patients should facilitate self-expression, interpersonal connectedness and social/occupational participation. Proactive questioning about the psychological and social experiences of patients with voice loss is a valuable entry point for rehabilitation planning. Personalized voice technology would enhance sense of self, communicative participation and autonomy and promote shared healthcare decision-making. Further research is needed to identify the best strategies to preserve and strengthen identity and sense of self.

[Methodological deficits in neuroethics: do we need theoretical neuroethics?]. / Methodische Defizite in der Neuroethik : Benötigen wir eine theoretische Neuroethik?

Current neuroethics can be characterized best as empirical neuroethics: it is strongly empirically oriented in that it not only includes empirical findings from neuroscience but also searches for applications within neuroscience. This, however, neglects the social and political contexts which could be subject to a future social neuroethics. In addition, methodological issues need to be considered as in theoretical neuroethics. The focus in this article is on two such methodological issues: (1) the analysis of the different levels and their inferences among each other which is exemplified by the inference of consciousness from the otherwise purely neuronal data in patients with vegetative state and (2) the problem of linking descriptive and normative concepts in a non-reductive and non-inferential way for which I suggest the mutual contextualization between both concepts. This results in a methodological strategy that can be described as contextual fact-norm iterativity.

Aplicación de la Ley de Dependencia en los pacientes con baja visión / Dependent Care Act application in low vision patients

Introducción. La Ley de Dependencia surge en España como un reto de la política social, cuyo objetivo es atender las necesidades de las personas que requieren apoyo para realizar las actividades esenciales de la vida diaria. El objetivo de este estudio es conocer las características de la población que se encuentra en situación de dependencia por el padecimiento de una afección oftalmológica. Material y métodos. Estudio descriptivo transversal a partir de la entrevista personal y revisión de la historia clínica de un grupo de pacientes atendidos en Consultas Externas del Servicio de Oftalmología del Hospital Clínico Universitario de Valencia, partiendo de los datos vertidos por un cuestionario adaptado a partir de la Encuesta de Discapacidades, Deficiencias y Estados de Salud realizada por el Instituto Nacional de Estadística. Resultados. La media de edad de los pacientes es de 65,8 años, mayoritariamente mujeres y laboralmente activos, con una edad media al inicio de la discapacidad de 59,1 años. Predominó la afección corneal como diagnóstico y la enfermedad común como etiología. La media de la agudeza visual fue de 0,4. Más de la mitad de los pacientes presentaron una situación clínica que podría empeorar con el tiempo. La mayor parte de los pacientes no había solicitado ayuda alguna. Conclusiones. Los pacientes estudiados siguen el mismo perfil poblacional que los estudios precedentes sobre prevalencia de la dependencia. Sería necesario adoptar medidas para mejorar la información que reciben los pacientes sobre sus derechos en este marco, facilitar los trámites burocráticos para la percepción de ayudas, disminuir el tiempo de demora en la valoración de la situación de dependencia y reforzar los dispositivos asistenciales para las personas dependientes(AU)

Introduction. The recent Promotion of Personal Autonomy and Care for Dependent Persons Act has opened up the opportunity to complete the social welfare system generated for the dependent and, perhaps only partly, to change the system of social networks that has meant, until now, their only support. The main goal of the present study is to know the characteristics of dependent people with low vision, the level of dependency and the personal, family and social impact of this situation. Materials and methods. Descriptive cross-sectional study after personal interview and clinical records review of a group of patients belonging to the Ophthalmology Service of the Hospital Clínico Universitario of Valencia. It is based on the results of an adapted questionnaire from the Disability, Deficiency and Health Survey conducted by the Spanish National Statistics Institute. Results. The mean age of the patients was 65.8 years, mostly women and occupied, with a mean age of 59.1 years at the beginning of the disability. The prevailing diagnose was corneal pathology and common disease as etiology. The mean visual acuity was 0.4. Clinical status of over 50% of the patients could worsen within time. Most of the patients had not applied for any assistance. Conclusion. The studied patients follow the same demographic profile as shown on previous studies over dependency. Facilities for paperwork issues, information, evaluation and assistance should be implemented in order to improve the attention to dependent people(AU)

BCI Meeting 2005--workshop on clinical issues and applications.

This paper describes the outcome of discussions held during the Third International BCI Meeting at a workshop charged with reviewing and evaluating the current state of and issues relevant to brain-computer interface (BCI) clinical applications. These include potential BCI users, applications, validation, getting BCIs to users, role of government and industry, plasticity, and ethics.

BCI Meeting 2005--workshop on signals and recording methods.

This paper describes the highlights of presentations and discussions during the Third International BCI Meeting in a workshop that evaluated potential brain-computer interface (BCI) signals and currently available recording methods. It defined the main potential user populations and their needs, addressed the relative advantages and disadvantages of noninvasive and implanted (i.e., invasive) methodologies, considered ethical issues, and focused on the challenges involved in translating BCI systems from the laboratory to widespread clinical use. The workshop stressed the critical importance of developing useful applications that establish the practical value of BCI technology.

Clinical and professional ethics in the management of motor speech disorders.

The field of biomedical ethics is increasingly discussed in speech-language pathology graduate school curricula as well as in continuing education forums. The application of the principles of medical ethics can be extremely helpful to the difficult decisions sometimes facing speech-language pathologists with respect to doing good for their patients while respecting both patients' autonomy and federal and state law. Professions have increasing attempted to codify professional issues relating to moral issues through codes of ethics and codes of conduct. This article focuses on applying selected principles of medical ethics and professional codes of conduct to the practice of speech pathology specific to motor speech disorders. Case examples are provided to illustrate ethical decision making through consideration of the American Speech-Language-Hearing Association (ASHA) Code of Ethics as well as a number of principles of medical ethics.