Anticipating ethical challenges and disparities in the dissemination of novel neurotechnologies

项目摘要/摘要 大脑计划的后半部分的一个中心目标是开发新的基于电路的治疗方法 脑部疾病。然而，改善对神经精神疾病的护理不仅需要发现 干预措施，但也要确保研究产品满足患者的需求，并可供 服务不足的群体。虽然到目前为止神经伦理学在很大程度上考察了个人主义的关切(例如 隐私、同意和身份)，这个应用使用闭环神经调节作为基于电路的 在社会层面上审查神经伦理挑战的治疗范例，如公平/获得和 研究方法的民主化。为了解决具有挑战性的话题，包括社会经济， 种族/民族和地理差异将需要在严格的社会科学和 社区参与，包括学术神经伦理话语中缺失的观点。施药 关于社区参与研究的原则，将聘请一个社区咨询委员会开会 与项目负责人每季度进行一次交流，并就初步结果、研究方法和 传播成果。开展了全国性的合作，以促进研究工作的开展 三个具体目标：1)比较不同群体对新神经技术的伦理担忧； 2)检查在不同临床中获得闭合环路神经调节的实践和患者因素 环境；以及3)调查在减少闭环系统障碍方面的伦理和实践挑战 神经调节研究。目标1将解决潜在患者/用户对以下问题的看法 神经技术在一个具有全国代表性的样本中，重点关注服务不足的群体。目标2将 使用NeuroPace通过癫痫中心的人种学比较研究检查临床环境 RNS治疗，这是目前唯一获得FDA批准和商业可用的闭环脑治疗 植入，因此可以用于预测精神病学和神经学的更广泛的挑战 闭环系统方法的未来应用。目标3将利用一个学习伦理学的新机会 通过由美国国立卫生研究院资助的新的国际合作传播专业知识和 闭合神经调节的最佳实践。在申请者看来，这种方法是创新的， 用先进的社会科学和社区解决社会层面的神经伦理问题 参与方法在神经伦理学中没有广泛应用。这项拟议的研究意义重大，因为它 解决公平和民主化问题，这对未来的神经技术和 神经科学。归根结底，这项工作将扩大在 神经伦理学，如分配正义和拓展研究中的紧张关系。在神经技术方面， 工作将有助于更充分地参与采用新技术和 早期将神经伦理学整合到降低研究障碍的努力中。

PROJECT SUMMARY/ABSTRACT A central goal for the second half of the BRAIN Initiative is to develop new circuit-based treatments for brain diseases. However, improving care for neuropsychiatric illness will require not only discovering interventions, but also ensuring that research products meet patients’ needs and are accessible to underserved groups. While neuroethics to date has largely examined individualistic concerns (such as privacy, consent and identity), this application uses closed-loop neuromodulation as a circuit-based treatment paradigm for examining neuroethical challenges at a societal level such as equity/access and the democratization of research methods. To address challenging topics including socioeconomic, racial/ethnic, and geographic disparities will require special expertise in rigorous social science and in community engagement, to include perspectives missing in academic neuroethical discourse. Applying principles of community-engaged research, a Community Advisory Board will be recruited to meet quarterly with project leaders and advise on preliminary findings, research methods and the dissemination of results. Nationwide collaborations have been developed to facilitate research pursuing three specific aims: 1) Compare ethical concerns about novel neurotechnology among diverse groups; 2) Examine practice and patient factors in access to closed-loop neuromodulation in varied clinical settings; and 3) Investigate ethical and practical challenges in reducing barriers to closed-loop neuromodulation research. Aim 1 will address the views of prospective patients/users about neurotechnology in a nationally-representative sample with a focus on underserved groups. Aim 2 will examine the clinic setting via comparative ethnographic research in epilepsy centers using NeuroPace RNS treatment, which is currently the only FDA-approved and commercially available closed-loop brain implant, and therefore can be used to anticipate broader challenges in psychiatry and neurology with future applications of closed-loop approaches. Aim 3 will utilize a novel opportunity for studying ethical concerns in research through a new NIH-funded international collaboration to disseminate expertise and best practices in closed-loop neuromodulation. The approach is innovative, in the applicants’ view, addressing societal-level neuroethical concerns with advanced social scientific and community engagement methods not widely applied in neuroethics. The proposed research is significant because it addresses considerations of equity and democratization that are critical to future neurotechnology and neuroscience. Ultimately, this work will broaden the scope of normative issues addressed in neuroethics, such as distributive justice and tensions in broadening research. In neurotechnology, the work will contribute to fuller engagement with ethical challenges in the adoption of new techniques and the early integration of neuroethics in efforts to lower research barriers.