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Committing to genomic answers for all kids: Evaluating inequity in genomic research enrollment.
Kane, Natalie J; Cohen, Ana S A; Berrios, Courtney; Jones, Bridgette; Pastinen, Tomi; Hoffman, Mark A.
Afiliação
  • Kane NJ; Children's Mercy Hospital, Kansas City, MO.
  • Cohen ASA; Children's Mercy Hospital, Kansas City, MO.
  • Berrios C; Children's Mercy Hospital, Kansas City, MO.
  • Jones B; Children's Mercy Hospital, Kansas City, MO.
  • Pastinen T; Children's Mercy Hospital, Kansas City, MO.
  • Hoffman MA; Children's Mercy Hospital, Kansas City, MO. Electronic address: mhoffman@cmh.edu.
Genet Med ; 25(9): 100895, 2023 09.
Article em En | MEDLINE | ID: mdl-37194653
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 on children. METHODS: Electronic health records for 2247 GA4K study participants were used to evaluate the distribution of individuals by demographics (race, ethnicity, and 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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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Etnicidade / Medicina Tipo de estudo: Prognostic_studies Limite: Child / Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Etnicidade / Medicina Tipo de estudo: Prognostic_studies Limite: Child / Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article