A new study from Washington University found that Black youths have a more difficult time getting genetic testing than their white counterparts.
The study, led by Christina Gurnett, MD, PhD, and Joyce Balls-Berry, PhD, found that about 50% of Black children with neurological disorders sought genetic testing versus 75% of white patients.
Genetic testing is a technique used in the medical field to test DNA for mutations that may be associated with severe illnesses. The findings, published in the journal Neurology on Feb. 12, indicated more barriers to access in genetic testing to diagnose rare conditions in Black communities. It is recommended for children with epilepsy and other neurological conditions.
“Having genetic information about a patient’s illness determines which medicine we choose. It determines how we monitor associated conditions, and what we tell families about what they can expect for their child. Disparities in accessing testing translate into inequities in health,” senior co-author Christina Gurnett, MD, said.
Senior co-author Joyce Balls-Berry told the St. Louis American, the stop gap did not open because of healthcare providers or hospital systems. It started at the insurance level.
“It’s clear the disparity was not occurring in our healthcare system,” Balls-Berry said. “I was pleased to find that we are thinking about [the patient’s] needs and their family needs.”
In those who participated in the study, more Black children relied on public health insurance for their care. Those with public health insurance were more likely to be denied in their coverage for genetic testing, even with a doctor’s referral.
But the barriers to access did not end there. About 27% of Black patients were unable to get genetic testing for reasons other than insurance denials, as opposed to 15% of white patients. As a result of their findings, the WashU Medicine pediatric neurology clinic hired a genetic counselor to serve as a bridge between families and insurers when they seek out genetic testing for their loved ones.
Travelling for multiple appointments may have also contributed to the disparity in those who sought genetic testing, but Balls-Berry said the stop gap came to the insurers.
Balls-Berry said she hopes to receive funding for new research to highlight at what point insurers block requests for genetic testing.
As the Trump administration chokes out funds for DE&I initiatives in corporate spaces, Balls-Berry said finding funding for her new research will be difficult. As a result, the team is trying to figure out new demographics to add to their studies, in an effort to continue their research.
The National Institute of Health announced this month that it was cutting overhead costs for research institutions that receive its grants. For instance, universities that historically spent 50% or more of their grant funding to support their staff would be capped at 15%.
Research aimed at disparities in health and technology for Black communities have already been put on hold as a result of the new executive order President Trump enacted that stifled DE&I initiatives at the federal level.
But Balls-Berry said she is hopeful that she and her team can find a way to continue their research and share their findings with the general public, and advocate for change as they did with this study.
“I want to show policy makers that it’s not just about race, but also insurance types. We need more standardization in insurance policies for the care of teenagers and children who battle rare health conditions,” Balls-Berry said.