Adolescent OCD Patient and Caregiver Perspectives on Identity, Authenticity, and Normalcy in Potential Deep Brain Stimulation Treatment

Abstract: The ongoing debate within neuroethics concerning the degree to which brain-computer interfaces such as deep brain stimulation (DBS) can change the personality, identity, and agency (PIA) of patients has paid relatively little attention to the first-person perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD) we conducted and analyzed semi-structured interviews with adolescent patients with OCD and their parents/caregivers. We asked patients about perceived and projected impacts to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD while others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate and increase social access through relieving symptoms, while half had concerns that DBS could increase social stigma, impact their identity formation. The views that stakeholders voiced about impacts to PIA give insights into how to approach decision-making and informed consent if DBS for OCD is offered to a pediatric population. They also offer interesting insights into adolescent concerns and experiences of disability identity and “normalcy” in the context of OCD.

Jared Smith – Baylor College of Medicine; Meghan Hurley – Baylor College of Medicine; Eric Storch – Baylor College of Medicine; Kristin Kostick-Quenet – Baylor College of Medicine; Gabriel Lazaro-Munoz – Harvard Medical School; Jennifer Blumenthal-Barby – Baylor College of Medicine