The article provides a conceptualization of self(-illness) ambiguity and investigates to what extent self(-illness) ambiguity is ‘special’. First, we draw on empirical findings to argue that self-ambiguity is a ubiquitous phenomenon. We suggest that these findings are best explained by a multidimensional account, according to which selves consist of various dimensions that mutually affect each other. On such an account, any change to any particular self-aspect may change other self-aspects and thereby alter the overall structural pattern of self-aspects, potentially leading (...) to self-ambiguity. Second, we propose that self-ambiguity comes in degrees and should be understood as a spectrum (as opposed to there being qualitative differences among instances of self-ambiguity). Third, we argue that complexity is the most useful dimension to organize cases of self-ambiguity, with mundane instances of self-ambiguity on the one end and self-illness ambiguity on the other end of the spectrum. Fourth, we address the promises and perils of narrativity with regard to self-ambiguity. Finally, we link our deflationary account of self(-illness) ambiguity to pattern theories of self. (shrink)

International institutions such as UNESCO are deliberating on a new standard setting instrument for neurotechnologies. This will likely lead to the adoption of a soft law document which will be the first global document specifically tailored to neurotechnologies, setting the tone for further international or domestic regulations. While some stakeholders have been consulted, these developments have so far evaded the broader attention of the neuroscience, neurotech, and neuroethics communities. To initiate a broader debate, this target article puts to discussion twenty-five (...) considerations and desiderata for recognition by a future instrument. They are formulated at different levels of abstraction, from the big picture to technical details, seek to widen the perspective of preparatory reports and transcend the narrow debate about “neurorights” which overshadows many richer and more relevant aspects. These desiderata are not an exhaustive enumeration but a starting point for discussions about what deserves and what requires protection by an international instrument. (shrink)

Deep brain stimulation (DBS) uses electrodes implanted in the brain to modulate dysregulated brain activity related to a variety of neurological and psychiatric conditions. A number of people who use DBS have reported changes that affect their sense of self. In the neuroethics literature, there has been significant debate over the exact nature of these changes. More recently, there have been suggestions that this debate is overblown and detracts from clinically-relevant ways of understanding these effects of DBS. In this paper, (...) we offer an alternative approach to understanding the effects of DBS on the self, drawing on John Sadler’s work on self-illness ambiguity. We argue that self-illness ambiguity is a complex concept, with at least three different aspects, and that each of the three aspects we identify also characterizes one kind of DBS-related change. Our analysis also suggests ways of helping patients to adjust to life as a DBS user. (shrink)

What happens at the end of a clinical trial for an investigational neural implant? It may be surprising to learn how difficult it is to answer this question. While new trials are initiated with increasing regularity, relatively little consensus exists on how best to conduct them, and even less on how to ethically end them. The landscape of recent neural implant trials demonstrates wide variability of what happens to research participants after an neural implant trial ends. Some former research participants (...) continue to receive support for their devices (e.g., battery and component replacements, software updates, etc.). Others, when safe, have their neural implants removed through surgical explantation. Still others continue to live with a deactivated neural implant embedded in their body. In the United States, there are no uniform requirements to provide services, of any kind, after an neural implant study ends, and other nations are similarly facing this challenge. The existence of a post-trial gap in an expanding neural implant research ecosystem invites obvious questions: What is owed to neural implant research participants post-trial, and why has providing it been so difficult to accomplish in practice? To take a step forward on this difficult issue, we assembled one group of stakeholders – researchers funded for neuroethics grants by the National Institutes of Health – to explore possible starting points on one topic: ethical guidance for post-trial care of research participants in neural implant trials. Based on shared concerns discussed in the expert workshop the current paper is a call to action. It reports the key areas of convergence from the meeting and highlights important next steps towards developing much needed guidance. (shrink)

Deep brain stimulation (DBS) uses electrodes implanted in the brain to modulate dysregulated brain activity related to a variety of neurological and psychiatric conditions. A number of people who use DBS have reported changes that affect their sense of self. In the neuroethics literature, there has been significant debate over the exact nature of these changes. More recently, there have been suggestions that this debate is overblown and detracts from clinically-relevant ways of understanding these effects of DBS. In this paper, (...) we offer an alternative approach to understanding the effects of DBS on the self, drawing on John Sadler’s work on self-illness ambiguity. We argue that self-illness ambiguity is a complex concept, with at least three different aspects, and that each of the three aspects we identify also characterizes one kind of DBS-related change. Our analysis also suggests ways of helping patients to adjust to life as a DBS user. (shrink)