Deep brain stimulation (DBS) has been regarded as an efficient and safe treatment for Parkinson’s disease (PD) since being approved by the Food and Drug Administration (FDA) in 1997. It is estimated that more than 150 000 patients have been implanted, with a forecasted rapid increase in uptake with population ageing. Recent longitudinal follow-up studies have reported a significant increase in postoperative survival rates of patients with PD implanted with DBS as compared with those not implanted with DBS. Although DBS (...) tends to increase life expectancy for most patients with PD, this medical benefit does not come without attendant negative consequences. For example, emerging forms of iatrogenic harms are sometimes induced—harms which were not initially expected when clinicians proposed neurosurgery and patients or their guardians consented to the treatment. We report and discuss the clinical case of a patient who was implanted with DBS more than 20 years ago (at the time of writing) and is now experiencing unexpected stages of PD. This case illustrates how extending the life span without improving quality of life may introduce a burden of harms for patients and families. As well, this case shows why we should prepare for the expanding numbers of PD-implanted patients experiencing a gain of longevity but with severe stages of disease leading to diminution in quality of life. This newly observed effect of DBS treatment requires us to explore ethical questions related to iatrogenic harms, informed consent, end of life and caregivers’ burden. (shrink)

One important concern regarding implantable Brain Computer Interfaces is the fear that the intervention will negatively change a patient’s sense of identity or agency. In particular, there is concern that the user will be psychologically worse-off following treatment despite postoperative functional improvements. Clinical observations from similar implantable brain technologies, such as deep brain stimulation, show a small but significant proportion of patients report feelings of strangeness or difficulty adjusting to a new concept of themselves characterized by a maladaptive je ne (...) sais quoi despite clear motor improvement. Despite the growing number of cases in the DBS literature, there is currently no accepted or standardized tool in neuroethics specifically designed to capture the phenomenological postoperative experience of patients implanted with DBS or BCI devices. Given potential risks of postoperative maladaptation, it is important for the field of neuroethics to develop a qualitative instrument that can serve as a shared method for capturing postoperative variations in patient experience of identity and agency. The goal of this article is to introduce an instrument we have developed for this purpose and call for further neuroethical efforts to assess the phenomenology of implantable brain device use. (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)

Deep Brain Stimulation (DBS) represents a key area of neuromodulation that has gained wide adoption for the treatment of neurological and experimental testing for psychiatric disorders. It is associated with specific therapeutic effects based on the precision of an evolving mechanistic neuroscientific understanding. At the same time, there are obstacles to achieving symptom relief because of the incompleteness of such an understanding. These obstacles are at least in part based on the complexity of neuropsychiatric disorders and the incompleteness of DBS (...) devices to represent prosthetics that modulate the breadth of pathological processes implicated in these disorders. Neuroprostheses, such as an implanted DBS system, can have vast effects on subjects in addition to the specific neuropsychiatric changes they are intended to produce. These effects largely represent blind spots in the current debate on neuromodulation. Anthropological accounts can illustrate the broad existential dimensions of patients’ illness and responses to neural implants. In combination with current neuroscientific understanding, neuropsychiatric anthropology may illuminate the possibilities and limits of neurodevices as technical “world enablers”. (shrink)