Neurologic Genetic Testing Is Less Likely in Black Patients
Black patients are nearly 50% less likely to receive genetic evaluation and testing for neurologic disorders compared with White patients, a new study showed.
Investigators found that Black people had more neurology visits prior to genetic evaluation than White patients, suggesting a potential bias in how patients are referred for testing.
"This testing is something that everyone, regardless of race or ethnic background, can benefit from," senior author Colin A. Ellis, MD, of the University of Pennsylvania, Philadelphia, Pennsylvania, said in a news release. "However, our study found that being evaluated for this testing was unequal among Black people. This indicates disparities in the accessibility of this potentially life-changing process."
The study was published online on March 6 in Neurology.
Racial Bias?
In recent years, the role of genetic testing for the diagnosis and management of neurologic conditions has increased significantly and is now considered the standard of care, the authors noted.
While other studies have found disparities in access to other healthcare services, little is known about racial disparities in genetic testing for neurologic conditions.
Investigators analyzed retrospective data on 128,440 people in the Philadelphia area who visited neurology clinics between 2015 and 2022. Of those, 2540 people were evaluated to receive genetic testing.
Black patients were less than half as likely to be evaluated compared with their White counterparts (odds ratio [OR], 0.49; P < .001), a disparity that remained similar even after controlling for other demographic factors in the multivariable analysis.
The researchers analyzed socioeconomic differences by dividing patients into wealth quartiles based on their zip codes and found that those from the least wealthy quartile were also less likely to be evaluated (OR, 0.67; P < .001).
However, after adjusting for age, investigators found no disparities between groups in the likelihood of completing genetic testing or in receiving a diagnostic result.
In the overall cohort, 73% of patients were White, and 20% were Black. However, 81% of patients evaluated for genetic testing were White, compared with only 11% who were Black.
Among patients who were evaluated for testing, Black people had more neurology visits prior to their evaluation compared with their White counterparts (16 vs 14 visits), suggesting potential bias in how people are referred to this testing, Ellis said.
"More work is needed to address these healthcare disparities, such as providing culturally sensitive genetic counseling services in multiple languages," he said. "Policies that focus on making genetic testing more affordable, as well as expanding insurance coverage, could also reduce disparities."
Limitations include the single-center study design and a small number of participants from other races and ethnicities, which could limit the findings' generalizability.
Broader Inequities
In an accompanying editorial, Amélie Pinard, PhD, and Aleksander Rajkovic, MD, PhD, of the Department of Pathology, University of California, San Francisco, noted disparities such as those documented in the study can contribute to broader inequities.
"They exacerbate existing socioeconomic and racial health disparities, creating a cycle where marginalized and minoritized groups continue to receive suboptimal healthcare," they wrote. "This not only affects the health and well-being of these communities but also leads to broader socioeconomic effects, including increased healthcare costs because of late-stage treatment, loss of productivity, and the perpetuation of health disparities across generations."
Decision support tools that clinicians can build and incorporate into their practices could help address racial disparities in genetic testing by helping identify patients who may benefit from evaluation, the editorialists noted. This approach might help reduce unconscious bias.
"Clinicians should actively participate in quality improvement projects aimed at understanding the barriers to genetic testing in their specific practice areas," including creating partnerships with local community leaders and organizations to facilitate informational sessions about genetic testing, they wrote.
"Addressing and understanding the barriers to accessing genetic testing are key steps toward promoting health equity and effective genetic counseling," they added.
The study was funded in part by the Vice Provost for Research, University Research Foundation, University of Pennsylvania. Ellis was supported by the National Institute of Neurological Disorders and Stroke of the NIH, the American Academy of Neurology Susan S. Spencer Clinical Research Training Scholarship, and by the Mirowski Family Foundation. The other authors’ disclosures are listed in the original paper. Pinard and Rajkovic reported no relevant financial relationships.
Batya Swift Yasgur, MA, LSW, is a freelance writer with a counseling practice in Teaneck, NJ. She is a regular contributor to numerous medical publications, including Medscape and WebMD, and is the author of several consumer-oriented health books as well as Behind the Burqa: Our Lives in Afghanistan and How We Escaped to Freedom (the memoir of two brave Afghan sisters who told her their story).