Division of Neurology, Department of Medicine, Neuroethics Canada, University of British Columbia, Vancouver, Canada.
Section of Neurosurgery, Department of Surgery, Max Rady College of Medicine, University of Manitoba, Winnipeg, Canada.
J Empir Res Hum Res Ethics. 2022 Oct;17(4):426-430. doi: 10.1177/15562646221112339. Epub 2022 Jul 18.
We discuss research ethics challenges experienced while running a discrete choice experiment administered to caregivers of children with treatment resistant pediatric epilepsy. We highlight ethical considerations around the study design of the discrete choice experimental paradigm that pertain to vulnerability of and caregiving burden on the population, imbalance of benefit-to-load of participation, and limitations of cultural meaningfulness and generalizability.
我们讨论了在对治疗抵抗性小儿癫痫患儿的照顾者进行离散选择实验时遇到的研究伦理挑战。我们强调了离散选择实验范式的研究设计中与人群脆弱性和照顾负担、参与的利益与负担平衡、文化意义和普遍性的局限性有关的伦理考虑。
