WashU Medicine Study Finds Black Children Far Less Likely to Complete Genetic Testing for Neurological Conditions

A new study from Washington University's School of Medicine has found that Black children suspected of having neurological conditions are significantly less likely than white children to complete the genetic testing needed for diagnosis and treatment.

According to the research, about half of Black pediatric patients completed the necessary genetic tests. Among white pediatric patients, the figure was 75%. Dr. Christina Gurnett, a WashU Medicine neurology professor and co-author of the study, said the tests are essential for opening up treatment options.

Gurnett, who leads the university's Division of Pediatric and Developmental Neurology, said the team expected some shortfall but not the size of the racial gap. "We were really surprised the completion rates were low across all children [for whom] we ordered these tests. But it was striking when we looked at racial differences," she said.

The researchers traced the problem by examining each step in how a test is ordered. A neurologist places the order during a clinic visit, but delays can follow. A child may have to return for another appointment or come back for the testing itself, and during that time the insurer is asked whether it will cover the test. Gurnett said breakdowns appeared at several points. Insurance denials were much more common among Black patients, but she said that did not account for the entire gap. She pointed to other likely factors, including unequal access to providers and unmeasured problems with transportation and returning for the actual test.

The study also found a gap tied to insurance type: patients with public coverage were 41% less likely to complete genetic testing than those with private insurance. Gurnett said a growing body of research shows genetic testing is cost-effective, because it often yields a diagnosis where costlier approaches such as imaging or metabolic studies have not. She expressed hope that further evidence will persuade more insurers to pay for it.

Gurnett added that clinicians often want to test parents as well as children with severe neurological problems. Many developmental disabilities stem from new genetic variants that arise only in the child, she said, and comparing the parents' DNA makes it possible to identify the change responsible.

She said families caring for children with disabilities already face heavy strain, including financial pressure from difficulty keeping jobs while meeting complex medical needs, along with the cost of care and therapies. Offering families another person to talk to who can help them obtain testing is one way to ease that burden, she said.

Gurnett said the findings from WashU's own clinics have been used to push for more resources. The pediatric neurology clinic now has a genetic counselor who can look for ways to help families avoid out-of-pocket deductible costs they cannot afford. According to Gurnett, someone deeply embedded in the field can identify workarounds that allow testing for patients whose insurance might not otherwise cover it.