Ethical Focal Points in the International Practice of Deep Brain Stimulation

Abstract

Deep brain stimulation (DBS) is a standard therapy for several movement disorders, and the list of further indications that are investigated is growing rapidly. We performed two surveys among DBS experts (n1D 113) and centers (n2D 135) to identify ethical focal points in the current global practice of DBS. The data indicate a mismatch between the patients' fears and the frequencies of the suspected side effects, a significant "satisfaction gap," signs of improvements of outcome, habituation effects in terms of involved disciplines, a growing spectrum of novel indications that partly conflicts with the experts' success probability ratings, and differences in the density of supply between countries that might affect the future development of DBS. We formulate ethical recommendations with regard both to patient-related practices (e.g., recruitment, assurance of alternatives) and to institutional development (e.g., measures for quality assurance and for the development of novel DBS indications).

Perspectives on Deep Brain Stimulation and Its Earlier Use for Parkinson’s Disease: A Qualitative Study of US Patients

“…We found that the Internet and neurologists played a key role in referring patients and served as main sources of information for patients. Christen et al report comparable findings in which private practice neurologists were the decisive "entry point" to DBS; additionally, up to 53.1% of patients used the Internet as their source of information [26]. The public uses the Internet to engage in social media interactions.…”

“…Another important concern in the neuroethical literature is that of personality changes. Christen et al [26] found that approximately 10% of their sample reported fear of personality changes. We found a similar percentage of patients reporting that fear, specifically prior to surgery.…”

“…While it is well-recognized that axial motor symptoms might not respond and could even worsen after DBS [23][24][25], for our participants, the reduction of pre-operative motor symptoms of PD appears to outweigh the potential negative side effects on those areas. However, there have been reports where participants, in spite of positive clinical improvements, express dissatisfaction [26,27].…”

Neuroethics at 15: The Current and Future Environment for Neuroethics

“…At the same time, we see a trend of expanding the use of DBS for conditions that are not particularly well understood pathophysiologically, particularly in psychiatry, in underpowered clinical trials or even single cases. This trend needs to be monitored and critically examined, as this research often does not satisfy established scientific standards of incremental clinical research (Bittlinger 2017;Christen et al 2014). Noninvasive forms of neurostimulation such as transcranial direct current stimulation (tDCS), transcranial magnetic stimulation (TMS), and focused ultrasound (fUS) are likely to be used more broadly.…”

Analyzing 7000 texts on deep brain stimulation: what do they tell us?

“…The results of this analysis are then reflected by referring to issues that dominated the DBS literature. Beside others, we are interested in how some topics that have been identified as ethical focal points in the international practice of DBS (Christen et al, 2014 ) are represented in this quantitative approach. In this way we explore the potential of such quantitative approaches for identifying subject matters that are of relevance from a bioethical perspective.…”