Study Reveals Greater Barriers to Genetic Testing for Black Children

Recent research has identified significant disparities in access to genetic testing among children, showing that Black children face more obstacles compared to their white counterparts. This testing is crucial for diagnosing neurological conditions such as autism, epilepsy, and global developmental delays, as it can inform treatment options and assess potential risks for family members.

Published in the journal Neurology, the study found that white children were nearly twice as likely to complete genetic testing as Black children. Moreover, requests for genetic testing from pediatric neurologists were denied more frequently for Black children, raising concerns about equity in healthcare.

Researchers from the University of Colorado Anschutz Medical Campus examined health records from pediatric neurology outpatient clinics at Washington University School of Medicine in St. Louis over an 18-month period. They analyzed data regarding genetic testing requests and completions, as well as insurance denial rates, focusing on social factors including race, ethnicity, and insurance type.

A total of 11,371 children were included in the study, with 78% identified as white and 15% as Black. Out of these, only 554 children underwent at least one genetic test, highlighting a significant gap in testing rates. Specifically, 5.2% of white children completed at least one genetic test compared to just 3.6% of Black children.

The denial rates for genetic testing requests were notably higher among Black children, with 23% of requests being denied versus 10% for white children. Additionally, children with public insurance were 41% less likely to complete genetic testing following a request from an outpatient neurology clinic compared to those with private insurance.

Despite the higher rates of denial for Black children, the study's lead author indicated that this alone does not fully explain the disparities observed. The research suggests that systemic issues, including factors like wealth and education inequality, as well as implicit biases, may contribute to these inequities.

It is essential to acknowledge and address these barriers to ensure equitable access to genetic testing. The study underscores the importance of implementing interventions aimed at improving access to genetic testing while prioritizing health equity, to avoid exacerbating existing health disparities.

While the findings are compelling, the researchers noted that the study's scope was limited to a single institution, which may affect the generalizability of the results to a broader population.