The ethical significance of user-control in AI-driven speech-BCIs: a narrative review.

AI-driven brain-computed interfaces aimed at restoring speech for individuals living with locked-in-syndrome are paired with ethical implications for user's autonomy, privacy and responsibility. Embedding options for sufficient levels of user-control in speech-BCI design has been proposed to mitigate these ethical challenges. However, how user-control in speech-BCIs is conceptualized and how it relates to these ethical challenges is underdetermined. In this narrative literature review, we aim to clarify and explicate the notion of user-control in speech-BCIs, to better understand in what way user-control could operationalize user's autonomy, privacy and responsibility and explore how such suggestions for increasing user-control can be translated to recommendations for the design or use of speech-BCIs. First, we identified types of user control, including executory control that can protect voluntariness of speech, and guidance control that can contribute to semantic accuracy. Second, we identified potential causes for a loss of user-control, including contributions of predictive language models, a lack of ability for neural control, or signal interference and external control. Such a loss of user control may have implications for semantic accuracy and mental privacy. Third we explored ways to design for user-control. While embedding initiation signals for users may increase executory control, they may conflict with other aims such as speed and continuity of speech. Design mechanisms for guidance control remain largely conceptual, similar trade-offs in design may be expected. We argue that preceding these trade-offs, the overarching aim of speech-BCIs needs to be defined, requiring input from current and potential users. Additionally, conceptual clarification of user-control and other (ethical) concepts in this debate has practical relevance for BCI researchers. For instance, different concepts of inner speech may have distinct ethical implications. Increased clarity of such concepts can improve anticipation of ethical implications of speech-BCIs and may help to steer design decisions.

Responsible innovation in stem cell research: using responsibility as a strategy.

Responsible innovation has been introduced as an important condition for advancing the field of regenerative medicine. This is reflected in the frequent references to responsible research conduct and responsible innovation in guidelines and recommendations in academic literature. The meaning of responsibility, how responsibility could be fostered and the context in which responsibilities should be enacted, however, remain unclear. The goal of this paper is to clarify the concept of responsibility in stem cell research and to illustrate how this concept could inform strategies to deal effectively with the ethical implications of stem cell research. Responsibility can be dissected into four categories: responsibility-as-accountability, responsibility-as-liability, responsibility-as-an-obligation and responsibility-as-a-virtue. The authors focus on responsible research conduct and responsible innovation in general to move beyond the scope of research integrity and illustrate that different notions of responsibility have different implications for how stem cell research is organized.

Literature and guidelines mention that responsible innovation could help the field of stem cell research to deal with ethical challenges. However, in this literature and guidelines it does not become clear how 'responsibility' should be understood, how responsibilities are recognized, how responsibilities are shared and how someone could take responsibility. In this article, different types of responsibility are discussed: responsibility-as-accountability, responsibility-as-liability, responsibility-as-an-obligation and responsibility-as-a-virtue. The types are discussed according to how they are different from one another and how they can be used to organize stem cell research. It is shown that these different types of responsibility help not only with research integrity issues but also with societal and other types of ethical challenges.

Ethical implications of visual neuroprostheses-a systematic review.

Objective. The aim of this review was to systematically identify the ethical implications of visual neuroprostheses.Approach. A systematic search was performed in both PubMed and Embase using a search string that combined synonyms for visual neuroprostheses, brain-computer interfaces (BCIs), cochlear implants (CIs), and ethics. We chose to include literature on BCIs and CIs, because of their ethically relavant similarities and functional parallels with visual neuroprostheses.Main results. We included 84 articles in total. Six focused specifically on visual prostheses. The other articles focused more broadly on neurotechnologies, on BCIs or CIs. We identified 169 ethical implications that have been categorized under seven main themes: (a) benefits for health and well-being; (b) harm and risk; (c) autonomy; (d) societal effects; (e) clinical research; (f) regulation and governance; and (g) involvement of experts, patients and the public.Significance. The development and clinical use of visual neuroprostheses is accompanied by ethical issues that should be considered early in the technological development process. Though there is ample literature on the ethical implications of other types of neuroprostheses, such as motor neuroprostheses and CIs, there is a significant gap in the literature regarding the ethical implications of visual neuroprostheses. Our findings can serve as a starting point for further research and normative analysis.

How digital health affects the patient-physician relationship: An empirical-ethics study into the perspectives and experiences in obstetric care.

BACKGROUND: Digital health technologies are believed to change the patient-physician relationship. Such changes are still speculative, as there are no studies in which both patients and health care professionals are asked for their experiences and perspectives on how digital health affects the patient-physician relationship. METHODS: We performed a qualitative interview study (n = 25) to identify relevant aspects of the patient-physician relationship as perceived by both health care professionals (n = 14) and patients (n = 11) of a digital monitoring platform for hypertensive disorders related to pregnancy. We focus on roles, responsibilities and medical decision-making. RESULTS: Digital monitoring helps patients to better understand their own condition and contributes to shared decision-making in terms of information exchange. Yet for clinical decision-making both patients and health care professionals argue that health care professionals should stay in the lead. The collected data is by some health care professionals considered hard data that allows objective and more standardized decision-making, while others believe digital monitoring requires further interpretation in order to personalize the clinical care to the patient. CONCLUSION: Digital technologies have subtle, yet double-edged, effects on the patient-physician relationship in terms of roles and responsibilities and the value addressed to the digital data. These insights let to 6 ethical recommendations for the implementation of digital health technologies to replace and support clinical care.

Has dementia research lost its sense of reality? A descriptive analysis of eligibility criteria of Dutch dementia research protocols.

BACKGROUND/OBJECTIVES: A substantial proportion of dementia patients are excluded from research participation, while for extrapolation of the study findings, it is important that the research population represents the patient population. The aim of this study is to provide an analysis of dementia research and its exclusion criteria in order to get a clearer picture whether the research participants represent the general dementia population. METHODS: Dementia studies registered at ToetsingOnline.nl between 2006-2015 were analysed. Study characteristics, funding and eligibility criteria were described and analysed using a standardised score sheet. RESULTS: The search yielded 103 usable study protocols. The number of trials has increased over the years, and 35% of the studies were industry-financed. Alzheimer's disease was the most researched type of dementia (84%). In observational studies the most frequently observed exclusion criterion is a neurological condition, while in drug studies and other intervention studies this is a somatic condition. Of all protocols, 86% had at least one exclusion criterion concerning comorbidity. Most studies focused on mild or moderate dementia (78%). CONCLUSION: Our study has shown that the distribution of dementia research over the different subtypes of dementia does not correspond with the prevalence of these subtypes in clinical practice. The research population in the protocols is not representative of the larger patient population. A greater number of dementia patients could derive benefit from the conducted research if the research agenda were more closely aligned with disease prevalence. A better representation of all dementia patients in research will help to meet the needs of these patients.