Background: Genomic research is central to personalized clinical care and precision medicine. One’s genome, along with environmental exposures and lifestyle, contributes to disease risk, treatment response, and disease outcomes. Furthermore, genomic variants associated with certain diseases can differ across groups, making diversity among participants in genomic research a pressing public health issue. Inclusion of African Americans in genomic research is particularly important as this group carries a disproportionate amount of disease burden in the United States. However, it has been well-documented that representation of African Americans in genomic research is relatively low compared to whites due, in part, to (a) medical mistrust, rooted in experiences of health care and medical research abuses, and (b) low genomic literacy—limited knowledge about the impact of genomics on medical care.
Proposed Solution to the Problem: The project team will expand two of its PCORI-funded engagement tools from cancer-related patient-centered outcomes research (PCOR) to genomic PCOR: the HealthLink model, which supports sustained research-related community organizing among community stakeholder groups, and the Building Your Capacity (BYC) curriculum. As part of the proposed project, the team will establish a Genomic Research Action Council (G-RAC) that will include African-American faith community members who will help develop an adapted BYC curriculum, participate in an iterative process of setting genomic research priorities, and disseminate those priorities in order to increase awareness.
- Adapt the Building your Capacity (BYC) curriculum to address genomic PCOR
- Establish a Genomic Research Action Council (G-RAC) with at least 12 faith community leaders and representatives as members
- Train G-RAC members using the adapted BYC curriculum and prepare them to contribute to all phases of genomic PCOR
- Support the G-RAC in identifying genomic PCOR priorities
- Collaborate with the G-RAC to disseminate genomic PCOR priorities to the broader African-American faith-based community within six churches in metro Detroit
- Create a toolkit to support the replication of the capacity-building effort within African-American faith communities in other US cities
Activities: The team will identify representatives of local African-American churches to serve as G-RAC members and deliver a tailored BYC curriculum to the G-RAC, supplemented by presentations by experts in genomic medicine. The team will also facilitate interactive exercises to help the group develop local priorities in genomic research. The G-RAC will be asked to present these priorities through a town hall meeting model, in six separate churches with the goal of increasing genomic literacy and public interest and engagement in genomic PCOR. Finally, the team will develop a toolkit that can be disseminated to African-American churches nationally.
Projected Outcomes and Outputs:
- Adaptation of the BYC curriculum to increase community capacity to partner in genomic PCOR
- Creation of a team of faith community stakeholders who are prepared to advocate for genomic research and precision medicine
- Creation of a genomic PCOR agenda that is driven by African Americans in metro Detroit, to be detailed in a report for broad dissemination
- Development of a strategy toolkit outlining all the work accomplished by the G-RAC that can be shared and replicated in African-American faith communities beyond Detroit to increase research capacity and involvement in genomic PCOR
Patient and Stakeholder Engagement Plan: The team will identify at least 16 faith community stakeholders to participate in the G-RAC and work with academic partners. This group will develop its own agenda consistent with local priorities, cultures, preferences, and opportunities. Engagement has already taken place through the team’s partner in this proposed project, the Faith-Based Genetic Research Institute, which has already conducted town hall meetings.
Project Collaborators: The project’s primary collaborator is the Faith-Based Genetic Research Institute (FBGRI), a national nonprofit with the mission of increasing African-American engagement in genetic and genomic research.