Brent Fogel, MD, PhD: Patients face insurance hurdles for genetic testing, UCLA study says

"A new UCLA Health study examined the effectiveness of genetic testing to diagnose neurologic conditions in people who had never been tested because of access barriers.

The paper, published in April(Link is external) in the journal Neurology Genetics, concluded that nearly 43% of study participants whose doctors recommended genetic testing faced insurance-related hurdles.

Brent Fogel, MD, PhD, professor of neurology and human genetics at the David Geffen School of Medicine at UCLA, said a genetic diagnosis can shape medical care and end the lengthy and expensive quest for the cause of a condition.

“In some cases, the diagnosis can lead you to a specific treatment you might not have otherwise pursued or lead to testing for an associated condition you might not have been aware of,” he said. “For some rare conditions there might be a clinical or research trial you can get involved in. Of course, children and other family members will also likely want to know if they are at risk.”

Dr. Fogel, corresponding author of the study and co-director of the UCLA Clinical Neurogenomics Research Center, said researchers performed exome sequencing, a type of genetic testing that sequences the coding portion of all 20,000 genes in the human genome, for nearly 300 people with suspected neurogenetic conditions. They also looked at why participants had never been tested in clinic before.

In all, 16% of participants received a diagnosis. Among them, 30% had previously forgone testing for insurance-related reasons.

Insurance barriers included outright denials, inadequate coverage or the inability to find out in advance if the test would be covered."

Read more at UCLA Health.