Department of Psychiatry and Behavioral Sciences, 6429Stanford University, USA.
Keck School of Medicine, University of Southern California, USA.
J Empir Res Hum Res Ethics. 2022 Feb-Apr;17(1-2):29-38. doi: 10.1177/15562646211060997. Epub 2021 Dec 6.
This study evaluated stakeholders' perspectives regarding participation in two hypothetical neuromodulation trials focused on individuals with Alzheimer's disease and related disorders (ADRDs). Stakeholders (i.e., individuals at risk for ADRDs [ = 56], individuals with experience as a caregiver for someone with a cognitive disorder [ = 60], and comparison respondents [ = 124]) were recruited via MTurk. Primary outcomes were willingness to enroll (or enroll one's loved one), feeling lucky to have the opportunity to enroll, and feeling obligated to enroll in two protocols (transcranial magnetic stimulation, TMS; deep brain stimulation, DBS). Relative to the Comparison group, the At Risk group endorsed higher levels of "feeling lucky" regarding both research protocols, and higher willingness to participate in the TMS protocol. These findings provide tentative reassurance regarding the nature of decision making regarding neurotechnology-based research on ADRDs. Further work is needed to evaluate the full range of potential influences on research participation.
本研究评估了利益相关者对参与两项针对阿尔茨海默病及相关疾病(ADRDs)患者的假设性神经调节试验的看法。利益相关者(即有 ADRDs 患病风险的个体 [=56]、有照顾认知障碍患者经验的个体 [=60] 和对照受访者 [=124])通过 MTurk 招募。主要结局是参与(或让自己的亲人参与)的意愿、有机会参与的幸运感以及参与两项协议(经颅磁刺激,TMS;深部脑刺激,DBS)的义务感。与对照组相比,有患病风险的组对这两个研究方案都表示了更高的“幸运感”,并更愿意参与 TMS 方案。这些发现为基于神经技术的 ADRD 研究的决策性质提供了初步的保证。需要进一步的工作来评估对研究参与的全面潜在影响。