Innovative Approach to Minority Recruitment in a Genetic Study

Background: African Americans remain underrepresented in genomics research, excluding African Americans from the benefits of medical discoveries and exacerbating health disparities (Bentley, 2017). One well-documented barrier to minority participation is mistrust in the medical system; however, some African Americans have noted a preference for racially and/or ethnically concordant researchers (George et al. 2014). In the pilot phase of the PeopleSeq Study, a proactive personal genome sequencing outcomes project, <1% of participants self-identified as African American or Black (Zoltick et al. 2019). To address the under-representation of African American participants, PeopleSeq obtained an NIH supplement to provide no-cost clinical genomic testing for individuals with African ancestry.

Purpose: To describe a multi-faceted recruitment approach built around educational events hosted by trusted African American leaders and community members who are engaged with and/or supportive of the research, combined with no-cost clinical genomic sequencing.

Methods: African American researchers and clinicians organized an educational event for community members to learn about genetics and proactive genome sequencing. Pre- and post-test genetic counseling and physician orders were coordinated to ensure a complete clinical experience outside of the PeopleSeq study.

Results: To date, 139 event participants expressed interest and 62 individuals have been invited via personal networks. Of those, 21 have elected to undergo sequencing. Recruitment is ongoing.

Conclusions: Participation of African American investigators, combined with community involvement, education sessions and providing no-cost testing can help increase minority representation in genomics research studies.