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Pediatric Deep Brain Stimulation for Dystonia: Current State and Ethical Considerations

Published online by Cambridge University Press:  07 September 2020

KATRINA A. MUÑOZ ,
JENNIFER BLUMENTHAL-BARBY ,
ERIC A. STORCH ,
LAURA TORGERSON  and
GABRIEL LÁZARO-MUÑOZ
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Abstract

Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation (pDBS) has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand.

Keywords

dystoniadeep brain stimulationpediatricneuroethics
Type
Articles
Information
Cambridge Quarterly of Healthcare Ethics , Volume 29 , Special Issue 4: Clinical Neuroethics , October 2020 , pp. 557 - 573
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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Notes

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