Some rare and devastating genetic disorders, such as Huntington’s disease or early-onset dementia, hide in our DNA like time bombs. But far more people carry mutations that can cause heart failure, seizures and ruptured blood vessels, which can be prevented if caught early.

Testing for these conditions is getting faster, cheaper and more widely available every year. Yet genetic information is rarely collected from adults — even when doctors are struggling to make a diagnosis. The study determined that only about half of the patients knew about their genetic mutations.

But it also found disparities in who knew it. The mutations were evenly distributed among the patients studied, but only about 20% of the Black patients were aware that they carried them, compared to 60% of white patients.

See Full Page