Lived Experience Roundtable on DBS Post-Trial Obligations

As clinical trials for DBS for investigational psychiatric and neurological indications continues to expand, it is critical to examine how the particular context of each indication shapes the corresponding post-trial support needs. This roundtable session features the experiences of two former DBS trial participants. In conversation with three neuroethicists, the discussion will look at how the nature and context of each disorder shapes ongoing clinical management and associated psychosocial support for adaptation to life with the therapeutic device.

Speakers

  • Gina Arata
  • Brandy Ellis
  • Erika Versalovic, PhD
  • Gabriel Lázaro-Muñoz, PhD, JD
  • Joseph J. Fins, MD, DHL, DMSc, MACP, FRCP

Attend

Encina Hall entrance

Neuroethics 2026
Building Bridges and Cultivating Community
Wednesday, April 15, 2026

This session was part of the Neuroethics 2026 conference organized by the INS and hosted by the Stanford Center for Biomedical Ethics at the Bechtel Conference Center at Encina Hall.

Agenda

  1. Introduction by Erika Versalovic / 5 minutes
  2. Conversation with Gina Arata, moderated by Joseph J. Fins / 12 minutes
  3. Conversation with Brandy Ellis, moderated by Gabriel Lázaro-Muñoz / 12 minutes
  4. Group discussion with Gina Arata, Brandy Ellis and neuroethicists / 16 minutes
  5. Audience Q&A / 15 minutes

Description

The increasing number of trials for implantable neural devices (e.g., deep brain stimulation (DBS), brain-computer interfaces (BCI), neural prostheses) and the instances of former trial participants being at-risk of losing access to a functioning neural device (e.g., DBS, retinal implants, implantable stimulators to manage chronic pain) has brought attention to participants’ needs at the end of these trials. Participants may lose access for different reasons, for example, device developers never planned to provide maintenance, lack of health insurance coverage for associated care, and developers going out of business. Beyond the hardware itself, participants require access to ongoing programming, clinicians with specialized expertise, and social support to scaffold their transition to life with a neural device outside the trial infrastructure.

As clinical trials for DBS for investigational psychiatric and neurological indications continues to expand, it is critical to examine how the particular context of each indication shapes the corresponding post-trial support needs. For example, in indications like traumatic brain injury (TBI), stimulation serves to activate neural circuits silenced by injury. Contrastingly, in cases like DBS for major depressive disorder, the devices counteract circuits that promote dysthymia serving as a continuous therapy that lessens depressive symptoms, bringing relief when effective. The nature and context of each disorder shapes ongoing clinical management and associated psychosocial support for adaptation to life with the therapeutic device. Mapping out post-trial support responsibilities must account for these biological and socially constructed variations among indications.

This session features the experiences of two former DBS trial participants to explore these questions. In this roundtable, three neuroethicists with different training backgrounds (medicine, neuroscience, law, philosophy) facilitate a collective conversation with two participants who received DBS for TBI and depression, respectively. Through focusing on lived-experience expertise, this session considers how post-trial care may vary depending on how DBS intervenes on both the brain and the specific context of the disorder or disability. By convening these different perspectives, this session aims to foster more accountable and effective approaches to post-trial support.

Speakers

Gina Arata

Gina Arata was a participant in a deep brain stimulation study for traumatic brain injury at Stanford University. She holds lived experience expertise through her experiences with both traumatic brain injury and life with a DBS device. She is currently in school to become a certified Pilates instructor. 

Brandy Ellis

Brandy Ellis is a patient-participant in clinical trials involving Deep Brain Stimulation for treatment-resistant depression. Since enrolling in a DBS trial in 2011, she has lived with an implanted neurostimulation device and has direct experience navigating long-term clinical management, device maintenance, and the evolving psychosocial realities associated with investigational neuromodulation. Her work focuses on post-trial obligations, continuity of care, and the integration of lived experience into research design and ethical frameworks. She contributes to multiple academic and clinical initiatives related to neurotechnology and patient advocacy, with particular emphasis on defining sustainable models for post-trial access and support.

Erika Versalovic
Erika Versalovic

Postdoctoral Researcher, Department of Neurosurgery, Mass General Hospital
Research Fellow, HMS Center for Bioethics

Dr. Versalovic received her doctorate in philosophy, specializing in neuroethics, from University of Washington where she studied the psychosocial impacts of neural devices on their users. She currently serves as a Postdoctoral Research Fellow within the Department of Neurosurgery at Massachusetts General Hospital and the Harvard Medical School Center for Bioethics. Dr. Versalovic’s research uses interview-based research methods to guide the responsible development of neural technologies. She currently serves as project lead for an initiative to improve post-trial access and longterm support for deep brain stimulation trial participants. 

Website / LinkedIn

Gabriel Làzaro-Muñoz
Gabriel Lázaro-Muñoz

Associate Professor, Massachusetts General Hospital
Member, HMS Center for Bioethics

Gabriel Lázaro-Muñoz, PhD, JD, is Associate Professor at Harvard Medical School, leads the Brain Bioethics Lab in the Department of Neurosurgery at Massachusetts General Hospital, and is Co-Director of the Neurotech Justice Accelerator at MGB (NJAM), a Dana Center for Neuroscience & Society. Dr. Lázaro-Muñoz combines his background in neuroscience, law, and bioethics to examine ethical, legal, and social implications (ELSI) of emerging technologies in neuroscience and genomics. To study these issues, he mainly uses embedded approaches such as participant-observation, in-depth interviews with stakeholders, surveys (national and international), and ethical, legal, and policy analysis. Dr. Lázaro-Muñoz has been principal investigator on 7 NIH-R01s from NHGRI, NIDA, NIMH, the BRAIN Initiative, and grants from private funders such as the Dana Foundation.

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Joseph J. Fins

Weill Cornell Medicine

Joseph J. Fins, MD, DHL, DMSc, MACP, FRCPis The E. William Davis, Jr. M.D. Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medicine where he is a Tenured Professor of Medicine, Professor of Medicine in Psychiatry, Professor of Medical Ethics in Neurology, Professor of Medical Ethics in Rehabilitation Medicine, and Professor of Health Care Policy and Research. He is the founding Chair of the Ethics Committee of New York-Presbyterian Weill Cornell Medical Center where he is an Attending Physician and Director of Medical Ethics. A member of the Adjunct Faculty of Rockefeller University and Senior Attending Physician at The Rockefeller University Hospital and Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law at Yale Law School, he co-directs, the Consortium for the Advanced Study of Brain Injury (CASBI) at Weill Cornell Medicine and Rockefeller.

Disclosure: Dr. Fins is on the Scientific Advisory Board of ReEmerge.

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Resources

Keywords: neuromodulation, lived experience, psychiatric, post-trial, deep brain stimulation

Recording

A recording of this session will be made available to registered attendees.