ELSIcon2022 • Paper • June 1, 2022
Karen Meagher, Monica Taylor-Desir
How should biobanks recruit diverse cohorts from historically marginalized communities? Should they measure diversity via ancestry genetics, race and ethnicity constructs, or both? This presentation considers the efforts of the University of Mississippi Medical Center-Mayo Clinic collaboration to build a bipolar biobank with increased representation of African Americans living in the Jackson, Mississippi area. While reducing genetic heterogeneity, the lack of under-represented minority populations in genomic bipolar disorder (BD) research represents a missed opportunity to assess generalizability of research findings. In a recent study, researchers quantified and compared demographic and clinical features of BD in persons of African Ancestry (AA) and European Ancestry (EUR). Participants enrolled in the Bipolar Biobank from 2009-2015. Of 1865 participants enrolled in the bipolar biobank, 65 (3.5%) self-identified as AA. The clinical phenotype for AA participants, in comparison to EUR participants was more likely to include a history of PTSD (39.7% vs 26.2%), cocaine use disorder (24.2% vs 11.9%), and tardive dyskinesia (7.1% vs 3%). The presenter will illuminate social and normative aspects of disease-specific biorepository cohort demography, including use of self-reported AA status, ancestry genetics vs. ethnic identity, and reflections on intentional biorepository design that seeks to address disparities in BD.