Religion Can Be a Barrier to Genetic Testing In Epilepsy

Genetic testing is increasingly used in studying epilepsy, but few studies have looked at how patients and their families feel about getting tested. Reporting at the American Epilepsy Society's 69th Annual Meeting in Philadelphia, PA, Shawn Sorge, MA, a research coordinator at the Epilepsy Family Study of Columbia University Medical Center, NYC offered findings of a survey of individuals in 20 families. All had a family history of autosomal dominant epilepsy with auditory features.

Of 179 individuals contacted, 90 completed a survey asking if they would be interested in a talk with a genetic counselor.

Individuals with epilepsy were significantly more likely to say yes than were their non-epileptic relatives (74% vs. 53%).

But individuals who said they were deeply or fairly spiritual "were significantly less likely than others to be interested in speaking to a genetic counselor (61% vs. 81%).

Among subjects surveyed who said they were deeply or fairly religious, only 57% said they would be likely to talk to a genetic counselor.

The fact of being religious was "significantly associated with decreased interest in pre-test genetic counseling" regarding possible mutations of LGI1, the researchers said.

But that belief state was less predictive of lack of interest in talking about testing than whether a subject had already had seizures, particularly severe ones.