Disparities in IEI (inborn errors of immunity) genetic testing: the impact of cost-free programs
Published online November 21, 2024
Genetic testing is crucial for diagnosing inborn errors of immunity (IEI) and enabling targeted therapies. Recent research suggests that IEI may be underdiagnosed in historically marginalized populations. Given the vital role of genetic testing in identifying IEI, investigating potential disparities became imperative. Many studies point to cost as a significant barrier to genetic testing, leading to the proposal of no-charge genetic testing programs. However, it was unclear if these programs actually improved genetic testing among underserved populations. This study aimed to uncover disparities in genetic testing for IEI and evaluate the impact of no-charge programs on access to testing.
Recently, Gilbert et al. in The Journal of Allergy and Clinical Immunology: In Practice analyzed data from two sources to examine disparities in genetic testing for inborn errors of immunity (IEI). First, they assessed a national insurance claims database to identify patterns of genetic testing among 18,603 individuals with IEI. Second, they evaluated data from a genetic testing laboratory, comparing patients who participated in a no-cost sponsored testing program (n = 6,681) with those who underwent standard, non-sponsored testing (n = 29,579). By comparing these groups, the authors investigated whether socioeconomic status, geographic location, and race influenced access to genetic testing and whether a no-cost program helped reduce these disparities.
Gilbert et al. found significant disparities in genetic testing for inborn errors of immunity (IEI). Analysis of the national insurance claims database showed that patients from socioeconomically disadvantaged areas, rural regions, and predominantly non-White neighborhoods were less likely to receive genetic testing. Data from the genetic testing laboratory suggested that the no-cost sponsored testing program improved access for individuals from socioeconomically disadvantaged areas, as participants in this program were more likely to come from these communities compared to those in the standard, non-sponsored testing program. Despite this progress, racial disparities persisted, with historically excluded racial groups being underrepresented in both testing programs relative to disease burden. These findings suggest that while no-cost genetic testing programs can help reduce economic barriers, additional efforts are needed to address racial inequities in access to genetic testing.
The Journal of Allergy and Clinical Immunology: In Practice is an official journal of the AAAAI, focusing on practical information for the practicing clinician.
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