Center for Medical Ethics and Health Policy

Pediatric Deep Brain Stimulation: Neuroethics and Decision Making

Master
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Project Description

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Pediatric dystonia is a debilitating movement disorder characterized by involuntary muscle contractions that cause unwanted movements and postures. This progressive disease often results in development of musculoskeletal deformities, which can lead to significant impairments in gait, standing, and hand function thereby severely impacting quality of life.
Since 1999, pediatric deep brain stimulation (pDBS) for refractory dystonia has become increasingly common around the world, but there has been little systematic research (e.g., clinical trials) regarding its safety and effectiveness in minors and limited examination of the ethical challenges and implications of this practice.

The long-term goal of this study is to promote the responsible use of neurotechnologies in children by empirically examining pressing neuroethics issues and decisional and informational needs of using DBS in this vulnerable population. The objectives of this study are 1) to examine which neuroethics issues, if any, actually pose a problem in this setting, determine how these issues manifest, what is the magnitude of the problem from the perspective of stakeholders, and develop ethically-justified guidelines to help manage these issues and 2) to develop a decision aid for families considering pDBS for dystonia. A decision aid for the most common pDBS indication (dystonia) will promote informed decision making, responsible use of DBS in children, and facilitate the development of decision aids for other pediatric neurotechnologies or DBS applications.

Supported by: RF1MH121371, grant funding by National Institute of Mental Health of the National Institutes of Health.

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Project Personnel

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Gabriel Lázaro-Muñoz, J.D., Ph.D., M.B.E., Principal Investigator
Eric A. Stoch, Ph.D., Principal Investigator
Jennifer Blumenthal-Barby, Ph.D., Principal Investigator
Kristin Kostick, Ph.D., Social Scientist
Peter Zuk, Ph.D., Research Ethics Fellow
Laura Torgerson, Ms.C., Research Associate
Katrina Muñoz, M.B.E., Research Assistant II
Clarissa Sanchez, M.P.H., Research Assistant

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Publications

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Muñoz KA, Blumenthal-Barby J, Storch EA, Torgerson L, Lázaro-Muñoz G (2020). Pediatric Deep Brain stimulation for Dystonia: Current State and Ethical Considerations. Camb Q Healthc Ethics 29(4):557-573.

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Presentations

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Which values ‘count’ in decision making for
pediatric deep brain stimulation? Neuroethics Network, Virtual. Kostick, K. (February 2021).

Pediatric Deep Brain Stimulation for Dystonia:
Current State and Ethical Considerations. International Neuroethics Society Annual Meeting, Poster Presentation, Washington, D.C. Muñoz, K.A., Blumenthal-Barby, J., Storch, E.A., Torgerson, L., Lázaro-Muñoz, G. (October 2020).

Clinicians’ Perspectives on Pressing Ethical Issues for Pediatric Deep Brain Stimulation. International
Neuroethics Society Annual Meeting; Virtual. Kalwani, L, Kostick K, Torgerson L, Muñoz K, Alex SE, Storch EA, Blumenthal-Barby J, Lázaro-Muñoz G (October 2020).

Criteria Clinicians’ Consider Before Offering Pediatric Deep Brain Stimulation. International Neuroethics Society Annual Meeting; Virtual. Torgerson L, Blumenthal-Barby J, Storch EA, Muñoz KA, Lázaro-Muñoz G (2020).

Pediatric Deep Brain Stimulation for Dystonia:
Current State and Ethical Considerations. American Society for Bioethics and Humanities Annual Meeting, Talk Presentation, Baltimore, MD. Muñoz, K.A., Blumenthal-Barby, J., Storch, E.A., Torgerson, L., Lázaro-Muñoz, G. (October 2020).

Pediatric Deep Brain Stimulation for Dystonia:
Current State and Ethical Considerations. 6th Annual BRAIN Initiative Investigators Meeting, Oral Presentation, Arlington, VA. Muñoz, K.A., Blumenthal-Barby, J., Storch, E.A., Torgerson, L., Lázaro-Muñoz, G. (June 2020).

Pediatric Deep Brain Stimulation: Clinicians’ Perspectives on the Most Pressing Ethical Challenges. 6th Annual BRAIN Investigators Meeting; Arlington, VA. Kalwani L, Torgerson L, Kostick K, Muñoz K, Sanchez C, Zuk P, Storch EA, Blumenthal-Barby J, Lázaro-Muñoz G (June 2020).