Black Kids Less Likely Get Gene Tests for Neuro Disorders

Genetic Testing Disparity: Black Children Less Likely to Complete Testing Despite Equal Referrals

Extensive genetic testing is crucial for children diagnosed with epilepsy,unexplained developmental delays,autism,and other neurological conditions. This testing helps pinpoint the genetic basis of these disorders,guiding treatment decisions and identifying potential risks for family members. however, new research reveals a concerning disparity: Black children are considerably less likely to complete genetic testing compared to their White counterparts, despite receiving referrals at similar rates.

A recent study published in the journal Neurology analyzed health records of 11,371 children seen at pediatric neurology outpatient clinics. While neurologists referred Black and White children for genetic testing at comparable rates, completion rates differed drastically. Only 3.6% of Black children completed genetic testing within a year, compared to 5.2% of White children.

“We were encouraged to see that pediatric neurologists’ requests for genetic tests were no different based on the patients’ racial or ethnic identity,” said Dr. jordan Janae Cole, a pediatric neurologist at the University of Colorado Anschutz Medical Campus and the study’s lead author. “However, the Black children had a lower rate of completing the genetic tests. 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.”

Insurance Coverage Barriers

A significant contributing factor to this disparity is insurance coverage. insurers were significantly more likely to deny coverage for genetic testing for Black children.specifically, 23% of requests for Black children were denied compared to 10% of requests for White children. this translates to White children being 66% less likely to face insurance denials.

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

Beyond Insurance: Addressing Systemic Barriers

While insurance coverage plays a crucial role, the study suggests that systemic factors beyond insurance contribute to the disparity. Researchers believe wealth inequality, education inequality, and implicit biases likely play a role in hindering access to genetic testing for Black children. Addressing these deeply rooted societal issues is paramount to achieving equitable healthcare outcomes.

Call to Action: Ensuring Equitable Access to Genetic Testing

This research highlights the urgent need to address systemic barriers preventing Black children from accessing essential genetic testing. Healthcare providers, policymakers, and insurers must collaborate to dismantle these barriers. Initiatives aimed at improving access to genetic testing must prioritize equity and address the complex interplay of factors contributing to disparities. only then can we ensure that all children, regardless of race or ethnicity, have access to the possibly life-changing benefits of genetic testing.

what steps do you think need to be taken to address these disparities and ensure all children have equitable access to genetic testing?

Interview: Bridging the Gap in Genetic Testing for Black Children

Dr. Jordan Janae Cole, Pediatric neurologist, University of Colorado Anschutz Medical Campus

Archyde’s Health correspondent, Maria Rodriguez, sat down with Dr. Jordan Janae Cole, a pediatric neurologist at the University of Colorado Anschutz Medical Campus and the lead author of a recent study published in the journal Neurology, to discuss the disparities in genetic testing completion rates between Black and White children with neurological conditions.

Genetic Testing Disparity: A Concern Worth Noting

Maria: Dr. Cole, your study found a concerning disparity in genetic testing completion rates between Black and White children. Can you tell us more about this and why it’s crucial?

Dr. Cole: Certainly, Maria.We found that while neurologists referred Black and White children for genetic testing at similar rates, only 3.6% of Black children completed the testing within a year, compared to 5.2% of White children. This is concerning because genetic testing is crucial for understanding the causes of neurological conditions like epilepsy, autism, and developmental delays. It guides treatment decisions and can help identify risks for family members. Hence, access to these tests should not vary based on a child’s race or ethnicity.

Insurance Coverage: A Key Barrier

Maria: One of the notable factors contributing to this disparity is insurance coverage. Can you walk us through the insurance-related challenges Black children face?

Dr. Cole: Insurers were more likely to deny coverage for genetic testing for Black children, with 23% of requests denied compared to 10% for White children. This means White children were 66% less likely to face insurance denials. We believe addressing these insurance disparities is crucial, but it’s not the only factor at play.

Beyond Insurance: Systemic Factors at Work

Maria: You mentioned that there are systemic factors beyond insurance contributing to this disparity. Could you elaborate on that?

Dr. Cole: Yes, wealth and education inequalities, as well as implicit biases, likely play a role. As a notable example, families may struggle to navigate the testing process or advocate for their child’s needs due to lack of resources or knowledge. Additionally, implicit biases among healthcare providers or insurers could influence decisions about testing. Addressing these deeply rooted societal issues is essential for achieving equitable healthcare outcomes.

A Call to Action: Ensuring Equitable Access

Maria: What steps do you think need to be taken to address these disparities and ensure all children have equitable access to genetic testing?

Dr. Cole: We need collaboration between healthcare providers, policymakers, and insurers. Initiatives aimed at improving access must prioritize equity and address the complex interplay of factors contributing to disparities.Moreover, we should regularly assess and report these disparities to ensure we’re making progress.

Maria: Dr. Cole, thank you for your time and for bringing light to this critically important issue.

Dr. Cole: Thank you, maria. It’s crucial that we keep equity at the forefront as we work to improve access to genetic testing.