Improving Recruitment, Engagement, and Access for Community Health Equity for BRAIN Next-Generation Human Neuroimaging Research and Beyond (REACH for BRAIN)

项目总结/摘要 尽管BRAIN 2.0呼吁BRAIN倡议“优先考虑多样性和包容性， 支柱，”研究与人类神经成像技术正在开发的大脑倡议继续， 依赖于不具代表性的便利样本。这引起了与获取和正义有关的神经伦理学问题， 和科学问题，因为非代表性的样本破坏了大多数关键假设， 研究中的因果推理。我们关于改善社区招聘、参与和访问的建议 下一代人类神经影像学研究和超越（REACH for BRAIN） 直接解决这些伦理和科学挑战。REACH for BRAIN将利用社区参与 与黑人和拉丁裔利益相关者网络，共同创建基于证据的解决方案和道德指导， 扩大参与NIH BRAIN研究和更广泛的人类神经成像研究的包容性。 目标1：利用利益相关者网络、成果图和已经建立的变革理论（ToC）， 试点工作，最初的目标是招募研究与大脑倡议支持连接2.0 项目，社区成员，神经科学家和神经伦理学专家将共同开发和实施一个 有针对性的、社区主导的和以参与者为中心的交付成果，以增加代表性不足的人的参与 和少数群体（URM）在神经影像学研究。使用社区参与工作室，REACH BRAIN将促进社区成员和研究团队之间的双向学习， 为社区创造价值，并为神经影像学研究人员实施该框架奠定基础， 并吸引和招募来自URM社区的积极参与者。框架的初步实施 将由Martinos中心的Connectome 2.0研究人员进行评估，然后进行扩展 麻省总医院和哈佛的神经影像学研究项目 目标2：考虑到脑科学中充满科学种族主义和生物本质主义的历史， 为了在神经影像学中创造适当的多样化参与，必须伴随着如何 可靠地衡量和报告“种族”、“族裔”、“血统”和相关的社会人口类别。在Aim中 2.我们将召集一个跨学科专家工作组（WG），以制定共识伦理指南， 在更具代表性的神经科学中测量和报告人口统计学的拟议数据元素 研究，我们将创建应用工具：a）为研究人员提供决策援助，用于研究种族，民族， 神经成像研究中的祖先数据;（B）社区成员的教育工具;以及c）用于 神经科学杂志编辑关于在神经成像研究中报告种族的出版指南。影响和 可供参考：我们将通过以下方式广泛传播项目的工具和指导： 社区活动;由项目伙伴共同主办的国家公共活动;与期刊编辑的圆桌会议; 会议报告和学术出版物;以及向NIH CDE Repository的正式提交。

Project Summary / Abstract Although BRAIN 2.0 called for the BRAIN Initiative to “prioritize diversity and inclusion as a fundamental pillar,” research with the human neuroimaging technologies being developed by BRAIN Initiative continues to rely on non-representative convenience samples. This raises neuroethics concerns related to access and justice, and scientific concerns because non-representative samples undermine most key assumptions supporting causal inference in research. Our proposal for Improving Recruitment, Engagement, and Access for Community Health Equity for BRAIN Next-Generation Human Neuroimaging Research and Beyond (REACH for BRAIN) will directly address these ethical and scientific challenges. REACH for BRAIN will utilize community engagement with Black and Latinx stakeholder networks, to co-create evidence-based solutions and ethical guidance to expand the inclusiveness of participation in NIH BRAIN research and human neuroimaging studies more broadly. Aim 1: Utilizing a stakeholder network, Outcome Map, and Theory of Change (ToC) already established in pilot work, and initially targeting recruitment for research with the BRAIN Initiative supported Connectome 2.0 project, community members, neuroscientists, and neuroethics experts will co-develop and implement a targeted, community-led and participant-centered deliverables to increase the participation of underrepresented and minoritized (URM) groups in neuroimaging research. Using Community Engagement Studios, REACH for BRAIN will facilitate bi-directional learning between community members and the research teams, providing local value for the community and creating a foundation for neuroimaging researchers to implement the framework, and engage and recruit motivated participants from URM communities. Initial implementation of the framework will be by Connectome 2.0 researchers at the Martinos Center, to be followed by evaluation and then expansion to additional neuroimaging research projects at MGH and Harvard. Aim 2: Given the fraught history of scientific racism and biological essentialism in brain science, Aim 1 efforts to create appropriately diverse participation in neuroimaging must be accompanied by guidance on how to reliably measure and report on “race,” “ethnicity,” “ancestry,” and related sociodemographic categories. In Aim 2 we will convene an interdisciplinary expert Working Group (WG) to create consensus ethical guidance and proposed data elements for measuring and reporting demographics in more representative neuroscience research, and we will create applied tools: a) a decision-aid for researchers for working with race, ethnicity, and ancestry data in neuroimaging research; (b) an educational tool for community members; and c) a template for neuroscience journal editors on publication guidelines for reporting race in neuroimaging studies. Impact and Deliverables: We will widely disseminate the project’s tools and guidance via: a dedicated website, co-created community events; national public events co-hosted by project partners; roundtables with journal editors; conference presentations and academic publications; and formal submission to the NIH CDE Repository.