Series
The 5th ELSI Congress - ELSIcon2022
ELSIcon2022 Paper: Seeking Diverse Inclusion in Bipolar Research: Lessons from a biobank
Type
Conference

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.

Tags

Keywords
Live
Paper
Recruiting diverse participants to precision medicine research
genomics research
Biobanks
Health Disparities

Videos in Series

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Moderated Plenary Panel

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Trainee Networking Session: Working with NHGRI

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 8

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 2

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 3

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The ELSI of Pandemic Biobanking

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?

Related Videos