• Posted February 18, 2025

Black Children Less Likely To Get Gene Tests for Neuro Disorders

TUESDAY, Feb. 18, 2025 (HealthDay News) --Extensive genetic testing is recommended for all children with epilepsy, unexplained developmental delays, autism and other neurological conditions.

New research, however, shows that Black children are less likely than white kids to complete such testing.

This type of testing uncovers whether a child's neurodevelopmental disorder is caused by a gene and can help pinpoint which gene or genes are involved. 

The results can guide treatment decisions and determine if other family members are at risk. 

While both Black kids and white kids received referrals from a neurologist for genetic testing at the same rate, far fewer Black children completed testing within a year, according to the study, which was published Feb. 12 in the journal Neurology.

A likely reason: Insurers were more likely to deny coverage of genetic testing for Black children than white kids.

“We were encouraged to see that pediatric neurologists’ requests for genetic tests were no different based on the patients’ racial or ethnic identity,” said study author Dr. Jordan Janae Cole, a pediatric neurologist at the University of Colorado Anschutz Medical Campus in Aurora. 

“However, the Black children had a lower rate of completing the genetic tests," she added in a news release. "While they were denied insurance coverage at a higher rate, that disparity did not account for all of the difference, indicating that other potential barriers and biases need to be addressed.”

More than a quarter of Black children were unable to get genetic testing for reasons other than insurance denials compared to 15% of white patients. 

Traveling for multiple appointments may have contributed to the difficulties in completing genetic testing, the study authors noted.

For the study, researchers analyzed health records for 11,371 children seen at pediatric neurology outpatient clinics at Washington University School of Medicine in St. Louis during an 18-month period. In all, 78% of kids in the study were white, and 15% were Black.

Researchers determined which kids were referred for genetic tests and compared that to insurance denial data.  

They then looked at social factors that may affect health, such as race and ethnicity, insurance type and the level of advantage or disadvantage in the child’s neighborhood.

A total of 554 children completed at least one genetic test during the study -- 5.2% were white kids and 3.6% were Black children. 

Insurers were less likely to cover the cost of testing for Black kids, the study found. White children were 66% less likely than Black children to have a request for outpatient genetic testing denied. 

Specifically, 23% of requests for Black children were denied compared to 10% of requests for white children, the study showed.

Children with public insurance were 41% less likely to complete genetic testing after a referral by an outpatient neurology clinic compared to their counterparts with private insurance.

"We suspect these disparities are due to other unmeasured impacts of systemic racism that we were unable to measure in our study, such as wealth inequality, education inequality, and implicit biases,” Cole said. 

“Recognizing these inequities and barriers to genetic testing is essential for developing interventions to eliminate them," she added. "We must ensure that efforts to improve access to genetic testing keep equity at the forefront, so they don’t worsen health disparities.”

Researchers noted that because the study was conducted at one institution, the results may not apply to the whole population.

More information

Learn more about genetic testing for autism at Autism Speaks.

SOURCE: American Academy of Neurology, news release, Feb. 12, 2025