Anticipating ethical challenges and disparities in the dissemination of novel neurotechnologies

项目总结/摘要 BRAIN计划下半年的一个中心目标是开发新的基于回路的治疗方法， 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， 弱势群体。虽然迄今为止神经伦理学在很大程度上研究了个人主义的问题（如 隐私，同意和身份），该应用程序使用闭环神经调节作为基于电路的 在社会层面检查神经伦理挑战的治疗范式，如公平/获取， 研究方法的民主化。为了解决具有挑战性的主题，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。应用 社区参与研究的原则，社区咨询委员会将被招募，以满足 每季度与项目负责人举行一次会议，就初步调查结果、研究方法和 传播成果。全国范围的合作已经发展，以促进研究的追求 三个具体目标：1）比较不同群体对新型神经技术的伦理关注; 2)检查在各种临床中获得闭环神经调节的实践和患者因素 3）调查减少闭环障碍的伦理和实践挑战 神经调节研究。目标1将解决潜在患者/用户对以下内容的看法： 神经技术在全国代表性的样本，重点是服务不足的群体。目标2将 通过使用NeuroPace在癫痫中心进行比较民族志研究来检查临床环境 RNS治疗，这是目前唯一一个FDA批准和商业化的闭环脑 植入物，因此可用于预测精神病学和神经病学中更广泛的挑战， 闭环方法的未来应用。目标3将利用一个新的机会， 通过NIH资助的新的国际合作传播专业知识， 闭环神经调节的最佳实践。申请人认为，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。这项研究意义重大，因为它 提出了对未来神经技术至关重要的公平和民主化的考虑， 神经科学最终，这项工作将扩大《公约》所处理的规范性问题的范围， 神经伦理学，如分配正义和扩大研究的紧张局势。在神经技术中， 这项工作将有助于更充分地应对在采用新技术方面的道德挑战， 神经伦理学的早期整合，以降低研究障碍。

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.