Pragmatism and the Importance of Interdisciplinary Teams in Investigating Personality Changes Following DBS

Abstract

Gilbert and colleagues (2018) point out the discrepancy between the limited empirical data illustrating changes in personality (and related concepts of identity, agency, authenticity, autonomy, and self, i.e., PIAAAS) following implantation of deep brain stimulating (DBS) electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow's essay on the divide between the two cultures of the humanities (representing the conceptual publications) and the sciences (representing the empirical work). This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context of DBS and negative perceptions of clinicianscientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarshipreflecting diverse ways of knowingprovides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences.

“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

“…Although some patients found positives from their illness (e.g., spending more time with family), none felt it had positively influenced their personality. This aligns with preliminary findings of another PD sample of DBS patients, where many reported significant, largely negative, personality changes due to their illness (Kubu et al, 2019). When reflecting on their most-valued personality characteristics, patients expressed a diminution of these over the course of their illness (Kubu et al, 2019).…”

“…This aligns with preliminary findings of another PD sample of DBS patients, where many reported significant, largely negative, personality changes due to their illness (Kubu et al, 2019). When reflecting on their most-valued personality characteristics, patients expressed a diminution of these over the course of their illness (Kubu et al, 2019). Patients reported fewer changes in personality after DBS, and those they reported were largely positive.…”

“…To achieve this, a prospective, in-depth qualitative approach involving both patients and caregivers is required. Standard psychometric personality measures are not designed to detect the types of changes associated with DBS, and there are limited reliable measures that examine complex concepts such as self and identity (Kubu et al, 2019; Lewis et al, 2015). Personality changes associated with DBS can be transient, remitting with stimulation reprogramming, and, therefore, may not be present at the exact time of assessment.…”

“…Some neuroethicists and clinicians have raised concerns about the potential sensationalizing and inflating of the putative effects of DBS on personality and related concepts (Gilbert et al, 2018). These include the tendency for articles to ignore, distort, or misrepresent empirical findings and that the alarmist discourse could produce unjustified fears that deter patients and families from pursuing a potentially beneficial treatment (Kubu et al, 2019). To address this sensationalism, firsthand empirical studies investigating the meaning and significance of DBS-related changes for patients and families are required.…”

Changes in Patients’ Desired Control of Their Deep Brain Stimulation and Subjective Global Control Over the Course of Deep Brain Stimulation

“…Consequently, these findings should not necessarily be generalized onto other demographic groups whose sense of control may be influenced by sociocultural factors related to gender, ethnicity, and race 1 . Similarly, these findings should not be generalized to other patient groups with different disorders and stimulation targets since all of these important variables may influence patients’ perceptions of control (Kubu et al, 2019 ).…”