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Abstract
Purpose
Persistent inequities in genomic medicine and research contribute to health disparities. This analysis uses a context-specific and equity-focused strategy to evaluate enrollment patterns for Genomic Answers for Kids (GA4K), a large metropolitan-wide genomic study in children.
Methods
Electronic health records for 2,247 GA4K study participants were used to evaluate the distribution of individuals by demographics (race, ethnicity, payor type) and location (residential address). Addresses were geocoded to produce point density and 3-digit zip code maps showing local and regional enrollment patterns. Health system reports and Census data were used to compare participant characteristics with reference populations at different spatial scales.
Results
Racial and ethnic minoritized and populations with low-income were underrepresented in the GA4K study cohort. Geographic variation demonstrates inequity in enrollment and participation among children from historically segregated and socially disadvantaged communities.
Conclusion
Our findings illustrate inequity in enrollment related to both GA4K study design and structural inequalities, which we suspect may exist for similar US-based studies. Our methods provide a scalable framework for continually evaluating and improving study design to ensure equitable participation in and benefits from genomic research and medicine. The use of high-resolution, place-based data represents a novel and practical means of identifying and characterizing inequities and targeting community engagement.
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Article info
Publication history
Accepted:
May 10,
2023
Received in revised form:
May 8,
2023
Received:
December 16,
2022
Publication stage
In Press Accepted ManuscriptFootnotes
Conflict of Interest Statement
The authors declare no conflict of interest.
Identification
Copyright
© 2023 Published by Elsevier Inc. on behalf of American College of Medical Genetics and Genomics.
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