In the future, policies surrounding end-of-life decisions will be faced with the question of whether competent people in a completely locked-in state should be enabled to make end-of-life decisions via brain-computer interfaces (BCI). This article raises ethical issues with acting through BCIs in the context of these decisions, specifically self-administration requirements within assisted suicide policies. We argue that enabling patients to end their life even once they have entered completely locked-in state might, paradoxically, prolong and uphold their quality of life.

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)

To conclude that there is enough or not enough evidence demonstrating that deep brain stimulation causes unintended postoperative personality changes is an epistemic problem that should be answered on the basis of established, replicable, and valid data. If prospective DBS recipients delay or refuse to be implanted because they are afraid of suffering from personality changes following DBS, and their fears are based on unsubstantiated claims made in the neuroethics literature, then researchers making these claims bear great responsibility for prospective (...) recipients' medical decisions and subsequent well-being. Our article “Deflating the ‘DBS causes personality’ bubble” reported an increase in theoretical neuroethics publications suggesting putative DBS-induced changes to personality, identity, agency, autonomy, authenticity and/or self and a critical lack of supporting primary empirical studies. This special issue of Neuroethics brings together responses to our initial publication, with our own counter-responses organized according to common themes. We provide a brief summary for each commentary and its main criticisms as well as a discussion of the way in which these responses can: 1) help clarify the meaning of PIAAAS, suggesting supplementary frameworks for understanding the impact of DBS on PIAAAS; 2) provide further empirical evidence of PIAAAS by presenting results from the researchers’ own work; and/or 3) offer a critique of our research approach and/or findings. Unintended postoperative putative changes to PIAAAS remain a critical ethical concern. It is beyond dispute that we need to develop reliable empirical and conceptual instruments able to measure complex cognitive, affective, and behavioural changes in order to investigate whether they are attributable to DBS alone. (shrink)

The study by Levy et al. (2024) offers new insights into clinical trial participant experience when assessing a novel visual cortical prosthesis (VCP) during an early feasibility study (EFS). We ap...

Bluhm and Cabrera advance that Sadler’s ‘Archimedean point’ is an example of integration of sub-perspectives by an overall self, as such a self who may be reconciled and understood to be caused by DBS systems. Although this suggests great avenues to explore, we stress that the Archimedean viewpoint is strictly bound to a metaphorical domain. We argue that what is needed to help (prospective) DBS patients is not a metaphorical viewpoint, but a scientific viewpoint, rooted in empirical evidence.

Our contribution proposes a philosophical and empirical analysis of emerging therapeutic education practices in the field of Parkinson’s disease, managed by deep brain stimulation (DBS). To this end, we mobilise the work on chronic illnesses of sociologists Anselm Strauss and Isabelle Baszanger. Through this conceptual and theoretical approach, the aim is to examine an hypothesis: Can the emerging offer of therapeutic education for Parkinson’s patients, managed by DBS, meet the requirement of a “recomposition” with a chronic degenerative disease whose management (...) remains continuous and life-long? A positive response to this assumption, supported in a second stage, leads us, in a third stage, to raise a limit: How far can we “negotiate” and “recompose” in the context of a disease, managed by a care that tends to increase the life expectancy of the patients and make the symptomatology evolve? Finally, a fourth stage highlights some (non-exhaustive) implications of these findings in ethical and political terms. (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)

Introduction As deep brain stimulation (DBS) has shifted to being used earlier during Parkinson’s disease (PD), data is lacking regarding patient specific attitudes, preferences, and factors which may influence the timing of and decision to proceed with DBS in the United States. This study aims to identify and compare attitudes and preferences regarding the earlier use of DBS in Parkinson’s patients who have and have not undergone DBS. Methods We developed an online survey concerning attitudes about DBS and its timing (...) in PD. The survey was distributed nationally in the United States via the Michael J. Fox Foundation Trial Finder, the American Parkinson Disease Association flyers, and as a link on the Parkinson Alliance website. Differences in responses between PD DBS and non-DBS patients were assessed. Results A total of 445 patients with PD met eligibility criteria for the survey of which 160 self-identified as having undergone DBS. Fifty-five percent (n = 124) of non-DBS patients believed that DBS for PD should only be considered after all medication options have been tried. Patients favoring early DBS had fewer concerns regarding the surgery than those favoring later DBS. Conclusion Our findings highlight a variety of important considerations and concerns patients have regarding DBS and its timing. These viewpoints are important aspects of shared decision-making, as they help to identify patients’ preferences, values, and goals, which should enable providers to better navigate, with their patients, the decision path for therapeutic options to consider. (shrink)