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.
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Keywords
Live
Paper
Recruiting diverse participants to precision medicine research
genomics research
Biobanks
Health Disparities
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 12
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 2
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Incorporating Patient and Relative Preferences in the Design of Traceback Cascade Testing Initiatives
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 14
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Reproductive Concerns of Disabled Women: Whose Definitions of Disability are We Embracing?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Engaging Adolescents in Genomic Decision Making
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 13
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Parent-reported barriers and facilitators to accessing care recommended from genomic sequencing in pediatric cancer patients
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 17
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Socioeconomic Status and Interest in Pursuing Genetic Testing for Hereditary Cancer in a US Based Population
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Democratizing Knowledge for Sickle Cell Disease Gene Therapy: A Deliberative Stakeholder Engagement Approach
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Fresh Air for Genetic Data Sharing
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 11
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 10
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Plenary: Troubled Dreams: Genetics, Race, and the Search for Justice in Sickle Cell Disease
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 9
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Late-Breaking Abstracts, June 2, 2022
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Voluntary Genetic Testing in the Workplace: An ELSI Analysis
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 7
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Ethical Topics Associated with Population Genomic Screening
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Diversity’s Pandemic Distractions
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 6
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 5
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Networking Session: Late-Breaking Abstracts - May 31, 2022
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: When State Laws Conflict: Choice of Law Challenges in Multi-Site Research
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 1
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: What Led to the Abolition of Iowa’s State Eugenics Program in 1977?
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The Biologization of Morality: Criminal Justice as a Matter of Public Health
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Flash Session 1
The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Using cost-utility analysis to evaluate the health equity impacts of population genetic screening for BRCA1/BRCA2
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Race-Based Genetic Testing: Learning from Black Americans to Inform Policy and Practice
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Reporting “Clinical Utility” in NICU Sequencing Studies: Systematic Review and Call for Rethinking
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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Whose future should we worry about?
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