Deep brain stimulation is used to treat children with nervous system disorders like dystonia, epilepsy and Tourette Syndrome, and it also is increasingly used for neuropsychiatric conditions like obsessive-compulsive disorder. But many questions remain regarding the ethical considerations for administering this kind of invasive treatment to minors. The National Institutes of Health awarded researchers at Baylor College of Medicine $1.73 million to study the psychosocial risks and benefits of pediatric deep brain stimulation (DBS) through a BRAIN initiative grant. They also will develop a decision support tool to help patients and their families determine if DBS is the right avenue of treatment.

“There has been little examination of the ethics and clinical questions raised by the used of invasive neurotechnologies in minors,” said Dr. Gabriel Lázaro-Muñoz, co-principal investigator and assistant professor at the Center for Medical Ethics and Health Policy at Baylor. “From both an ethical and a clinical standpoint, it is very important not to treat minors as small adults. We want to examine these issues in order to help maximize the benefits of these technologies and minimize any potential harm to children and their families.”

As part of this study, Baylor researchers will interview minors with dystonia who underwent DBS, those who were offered and subsequently denied DBS and those who may be a candidate for DBS. The research team also will interview patients’ families and clinicians. A second group of interviewees will include children with obsessive-compulsive disorder who could be DBS candidates if the treatment was available. Currently, the FDA has partially approved DBS for treating OCD in adults.

“Although most youth benefit from therapies for OCD (i.e., cognitive behavioral therapy, medication), a significant number do not, which raises the question of ‘what’s next?’ It is critical to engage stakeholders including parents, adolescents and clinicians in order to bring forward interventions that are effective, acceptable, and balance clinical and ethical factors,” said Dr. Eric Storch, co-principal investigator, professor and vice chair of psychiatry and behavioral sciences at Baylor.

After conducting the interviews, the team will create a decision aid to help caregivers considering whether DBS is the right treatment for their child. These tools have been shown to increase patient understanding of risks.

“Decision support tools aim to help patients understand what is important to them and then guide them through considering the risks, benefits and uncertainties of the medical options in light of that,” Dr. Jennifer Blumenthal-Barby, co-principal investigator and professor and associate director of the Center for Medical Ethics and Health Policy at Baylor. “Although pediatric patients cannot legally make their own decisions, many adolescents can and should be engaged in the decision making process in age-appropriate ways.”

Research reported in this publication was supported by the National Institute of Mental Health of the National Institutes of Health under Award Number RF1MH121371. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.