Stakeholder engagement in genetics research development in diverse urban communities in the Midwestern United States:...

The inclusion of individuals from diverse backgrounds is essential to enhancing the generalizability and interpretability of genetic testing results. It is imperative to foster stakeholder engagement at all steps in the research process in diverse communities, given past and present experiences of marginalization and discrimination in healthcare research. A stakeholder engagement workshop was convened to provide input on study design and community priorities for genetic research in diverse communities.

Seventeen stakeholders including primary care providers (PCP) and patient advocates from diverse communities provided anonymous quantitative (ranking exercises) and qualitative (group discussion) input during a 2-h web-based workshop. Stakeholders discussed the following topics: prioritization of conditions to include in community-based genetic screening research and considerations for genetic research development and design in diverse communities. Emergent themes were noted and summarized to inform future research development.

Community stakeholder discussion themes included: rationale for conditions to include in community-based genetic screening, strategies for community trust-building, the importance of actionability and support following results, provision of informational support related to genetic testing privacy issues and protections, and inclusion of genetic testing education for both PCPs and community members.

During this workshop, stakeholder input addressed considerations across the research continuum from study conceptualization to the application of findings in diverse community settings. Stakeholders' comments provide valuable insights on the development of a genetic screening program that incorporates their input from the beginning to beyond the completion of the study period.