In a journal club facilitated by Tobias Haeusermann, we discussed concerns within the neuroethics community that patients undergoing deep brain simulation (DBS) could experience changes in personality, identity, agency, authenticity, autonomy, and self. Using Frederic Gilbert et al., “Deflating the ‘DBS Causes Personality Changes’ Bubble” as a starting point for our conversation, we explored the apparent disconnect between theoretical neuroethics and clinical experience, as demonstrated by the scarcity of robust empirical evidence for such changes in over 1500 papers. However, we also considered the risk of misinterpretation as a consequence of generalizing over these studies, which address different aspects and applications of DBS.
Our interdisciplinary discussion was informed by a few special guests, including Agnieszka Jaworska from the UC Riverside Department of Philosophy and Jill Ostrem from the UCSF Movement Disorders and Neuromodulation Center. We discussed current treatment outcomes for patients with Parkinson’s disease, the potential for DBS as a treatment in psychiatric disorders, and the argument that specific brain targets warrant different levels of ethical concern. We noted the striking difference in public response to DBS compared to other therapeutic technologies, like cardiac pacemakers, and questioned whether low adoption of DBS stems from its actual clinical effects or its symbolic significance. With input from the social sciences, we considered how marketing and shifting cultural metaphors may influence public perception of DBS. Reviewing challenges previously encountered in tracking behavioral changes in neurodegenerative diseases such as bvFTD and ALS, we also considered that the question of what personality changes may be attributable to DBS will only become more difficult and more urgent with future envisioned applications.