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

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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.