Disparities in Genetic Testing for Inborn Errors of Immunity.

Autor: Gilbert KM; Department of Population Medicine, Harvard Pilgrim Health Care Institute, Boston, MA, USA. Electronic address: karen_gilbert@hphci.harvard.edu., McLaughlin HM; Pharming Healthcare Inc., Department of Medical Affairs, Warren, NJ, USA., Farmer JR; Clinical Immunodeficiency Program of Beth Israel Lahey Health, Division of Allergy and Immunology, Lahey Hospital & Medical Center, Burlington MA, USA., Ong MS; Department of Population Medicine, Harvard Pilgrim Health Care Institute and Harvard Medical School, Boston, MA, USA.
Jazyk: angličtina
Zdroj: The journal of allergy and clinical immunology. In practice [J Allergy Clin Immunol Pract] 2024 Nov 21. Date of Electronic Publication: 2024 Nov 21.
DOI: 10.1016/j.jaip.2024.11.011
Abstrakt: Background: Inequities in genetic testing have been documented in a range of diseases, and no-charge genetic testing programs have been proposed as a means to enhance access. However, no studies have examined disparities in genetic testing for inborn errors of immunity (IEI) and the impact of no-charge programs on testing equity.
Objective: To examine, socioeconomic, geographic, and racial disparities in the uptake of genetic testing for IEI in the US, and the impact of a no-charge sponsored program on testing equity.
Methods: Retrospective cohort analysis of: (1) a national claims database capturing individuals with IEI (n=18,603), and (2) data from a clinical genetic testing laboratory capturing IEI patients participating in a no-charge sponsored program (n=6,681) and a non-sponsored program (n=29,579) for IEI genetic testing.
Results: Among IEI patients captured in the claims database, those residing in areas of greater deprivation (OR 0.95, 95% CI 0.92-0.98), rural areas (OR 0.82, 95% CI 0.71-0.96), and non-White neighborhoods (OR 0.89, 95% CI 0.81-0.98) were less likely to undergo genetic testing. Participants of the sponsored IEI genetic testing program lived in areas of greater deprivation, compared with the non-sponsored program (median: 46 vs 42, p<0.001). However, minoritized racial groups were underrepresented in both the sponsored and non-sponsored programs, relative to disease burden.
Conclusion: We found significant disparities in genetic testing for IEI. Although eliminating financial barrier to testing reduced socioeconomic disparities in genetic testing for IEI, racial disparities persisted. Further research is needed to address barriers to testing among underserved populations.
(Copyright © 2024. Published by Elsevier Inc.)
Databáze: MEDLINE