EMBARGOED FOR RELEASE UNTIL 4 PM ET, March 06, 2024
Black People Half as Likely to Be Evaluated for Genetic Testing as White People
Study Finds Racial Disparities Among Those Visiting Neurology Clinics
MINNEAPOLIS 鈥 Genetic testing has become a more common way to diagnose and manage many neurologic conditions including dementia, Parkinson鈥檚 disease and epilepsy, but a new study has found not everyone may have the same level of access to these tests. Black people were half as likely as white people to be evaluated for genetic testing, according to a study published in the March 6, 2024, 2024, online issue of , the medical journal of the 好色先生. 鈥淕enetic testing is crucial for identifying neurologic conditions and has potential to impact treatment and management of symptoms,鈥 said study author Colin A. Ellis, MD, of the University of Pennsylvania in Philadelphia and member of the 好色先生. 鈥淭his testing is something that everyone, regardless of race or ethnic background, can benefit from. 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.鈥 Genetic testing looks at a person鈥檚 DNA for variations in genes associated with a disease. This can be helpful for diagnosis and management of a disease, as well as family planning. Researchers looked at 128,440 people in the Philadelphia area who visited neurology clinics during a seven-year time frame. Of those, 2,540 people were evaluated to receive genetic testing. Researchers looked at three steps of the genetic testing process: attending an evaluation, completing genetic testing and receiving a diagnosis. They looked at people with seven neurologic diseases: ALS, ataxia, dementia, epilepsy, myopathy, neuropathy and Parkinson鈥檚 disease. Among all participants, 73% were white and 20% were Black. However, among participants evaluated for genetic testing, 81% were white and 11% were Black. After adjusting for ethnicity, socioeconomic status, and insurance status, Black people were 51% less likely than white people to be evaluated for genetic testing. Among those who were evaluated for genetic testing, Black people had more neurology office visits before their evaluation, with 16 visits, than white people, with 14 visits. Ellis noted this may suggest a bias in how people are referred to this testing. 鈥淲hile we found disparities in receiving a genetic evaluation, once people were evaluated, everyone benefited similarly from genetic testing when prescribed,鈥 Ellis said. 鈥淢ore work is needed to address these health care disparities, such as providing culturally sensitive genetic counseling services in multiple languages. Policies that focus on making genetic testing more affordable as well as expanding insurance coverage could also reduce disparities.鈥 A limitation of the study was the small number of participants of other races and ethnicities. Also, the study was conducted at one medical center, so the results may not apply to other centers or settings. The study was supported by the University of Pennsylvania. Ellis鈥檚 research was also supported by the Susan S. Spencer, MD Clinical Research Training Scholarship in Epilepsy, which is funded by the American Epilepsy Society, Epilepsy Foundation and American Brain Foundation in collaboration with the 好色先生. Learn more about brain health at , home of the 好色先生鈥檚 free patient and caregiver magazine focused on the intersection of neurologic disease and brain health. Follow Brain & Life庐 on , and . When posting to social media channels about this research, we encourage you to use the hashtags #Neurology and #AANscience.