Informing Choice for Neurotechnological Innovation in Pediatric Epilepsy Surgery - Abstract
More than 500,000 children in the USA and Canada suffer from epilepsy today. Unmanaged, epilepsy can
result in cognitive decline, social isolation and poor quality of life, and has substantial economic impact on
families and society. 30% of children with epilepsy continue to have seizures while on anti-seizure medication,
a condition known as drug resistant epilepsy (DRE). Properly selected, up to 70% of DRE patients become
seizure-free after surgery. Nevertheless, epilepsy surgery carries with it risks proportional to its level of
invasiveness. As a result, a variety of less invasive interventions have been developed, including MRI-guided
laser interstitial thermal therapy, robot-assisted stereo-EEG, stereotactic radiosurgery, vagal nerve stimulation,
and responsive neurostimulation. Unlike novel pharmaceutical treatments, these interventions are rarely put
through the rigors of a randomized controlled trial, nor are the outcomes of adult trials clearly generalizable to
children. To address the knowledge gap and ethical considerations surrounding novel neurotechnological
interventions and the pathway to their adoption for pediatric DRE, we will use a pragmatic neuroethics
framework to: Aim (1) engage affected families and clinicians in focus groups in the USA and Canada to
identify critical features for choices about procedural trade-offs, values, and concerns for decision-making and
communication about neurotechnological interventions for pediatric DRE; Aim (2) apply the findings from Aim
1 to a discrete choice experiment (DCE) online survey to determine the value placed on key attributes (e.g.,
risks, benefits, compliance, reversibility) of decisions surrounding conventional and novel DRE interventions
among families affected by DRE, and clinicians who care for them in the USA and Canada; and, Aim (3)
integrate the findings from Aims 1 and 2 to develop, evaluate and deliver patient-directed resources in the form
of infographics and informational materials and videos, and clinician resources for family decision-making,
clinician counseling and care. The significance of this work lies in the unique ethical challenges for children
with DRE whose bodies, brains, experiences, and goals are still evolving, and for whom neurosurgical
innovations are imminent. The focus on children speaks directly to the goals articulated in the visions of the
RFA and BRAIN 2025 pertaining to advances in neurotechnology and its effects on personal identity, agency,
and perception of normality, risk/benefit analyses and consent issues, ethical implications of evolving
neuromodulation technologies, invasiveness, and special populations.
