Parsons Meredith V, Skolnik Maya, Mwobobia Judith, Solomon Erin D, DuBois James M, McIntosh Tristan
Bioethics Research Center, Washington University in St. Louis School of Medicine, St. Louis, Missouri, United States of America.
PLoS One. 2025 Sep 2;20(9):e0330367. doi: 10.1371/journal.pone.0330367. eCollection 2025.
Neurotechnologies often advance through industry-academia (IA) partnerships and offer insight into brain and nervous system functions, bringing improved diagnosis and treatment options to patients. Both neurotechnology and IA partnerships pose ethical challenges that can impact research participation experiences, patient treatment, and health outcomes.
Investigators conducted interviews with 16 patients who used neurotechnology devices in therapeutic or research settings. Interviews explored participants' experiences using neurotechnology, perspectives on IA partnerships, preferences for neural data use and long-term care, and advice for future neurotechnology device users. Data were analyzed using inductive thematic analysis.
Participants were generally supportive of IA partnerships. However, they also recognized that these relationships could unduly influence research and clinical decisions. While participants appreciated the information shared with them prior to using the neurotechnology, informational gaps were still identified regarding the impact of devices on daily living, disclosure of relationships with industry, plans for data use and sharing, and plans for long-term care and upkeep of the device. Participants generally supported neural data sharing to advance research or improve patient care, although for some this depended on data sensitivity and how privacy would be protected. Participants advocated for post-trial access to experimental neurotechnologies and felt that responsibility for long-term care and device maintenance is best shared among companies, doctors, academic researchers, insurance companies, and patients themselves. Future device users were advised to self-advocate, maintain realistic expectations, and learn about a device before engaging with it.
Given current and future capabilities of neurotechnologies and the data they generate, IA partnerships that develop and commercialize neurotechnologies require careful consideration and implementation of practices that meaningfully consider patient perspectives, needs, and safety. Such practices include bias management in the design, conduct, and reporting of neurotechnology research, neural data sharing and use, post-trial device access, and informed consent processes.
神经技术通常通过产学研（IA）合作得以发展，有助于深入了解大脑和神经系统功能，为患者带来更好的诊断和治疗选择。神经技术和产学研合作均带来了伦理挑战，可能影响研究参与体验、患者治疗和健康结果。
研究人员对16名在治疗或研究环境中使用神经技术设备的患者进行了访谈。访谈探讨了参与者使用神经技术的经历、对产学研合作的看法、对神经数据使用和长期护理的偏好，以及对未来神经技术设备使用者的建议。使用归纳主题分析法对数据进行了分析。
参与者总体上支持产学研合作。然而，他们也认识到这些关系可能会对研究和临床决策产生不当影响。虽然参与者对在使用神经技术之前与他们分享的信息表示赞赏，但在设备对日常生活的影响、与行业关系的披露、数据使用和共享计划以及设备的长期护理和维护计划方面，仍存在信息差距。参与者总体上支持共享神经数据以推进研究或改善患者护理，尽管对一些人来说，这取决于数据的敏感性以及隐私将如何得到保护。参与者主张在试验后能够使用实验性神经技术，并且认为长期护理和设备维护的责任最好由公司、医生、学术研究人员、保险公司和患者自己共同承担。建议未来的设备使用者自我主张、保持现实的期望，并在使用设备之前了解该设备。
鉴于神经技术及其产生的数据的当前和未来能力，开发神经技术并将其商业化的产学研合作需要仔细考虑并实施切实考虑患者观点、需求和安全的做法。这些做法包括在神经技术研究的设计、实施和报告中进行偏差管理、神经数据的共享和使用、试验后设备的使用以及知情同意程序。
