Why the study?
Pediatric deep brain stimulation has emerged for refractory dystonia due to limited effectiveness and side effects of available treatments, but clinical and neuroethics research in this area remains limited.
Is it ethically justified to offer pediatric deep brain stimulation to children with refractory dystonia?
Is it ethically justified to offer pediatric deep brain stimulation to children with refractory dystonia?
This paper provides an ethical framework supporting the use of pediatric deep brain stimulation for certain etiologies of refractory dystonia.
Supports ethical consideration of pDBS in select refractory pediatric dystonia; leaves open broader application and long-term data needs.
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.
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Muñoz et al. (2020) studied this question.
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