Study: To Increase Genetic Literacy, Boost Confidence

In a very short span of time, clinical genetic testing has gone from rarity to routine. With tens of thousands of these tests available, it has become commonplace for patients to be referred for some type of genetic test. But the language of genetic test reports — not to mention the scientific concepts underpinning them — is anything but commonplace. More than ever, genetic literacy is needed to navigate basic interactions with doctors and other healthcare professionals.

Unfortunately, the American primary education system often fails to provide even a basic understanding of DNA and genetics to young students. Throughout my career reporting on genomic advances, the lack of such an education among regular consumers has been demonstrated again and again. How, then, to promote genetic literacy to all people who could benefit from it?

That situation was the motivation for a new study from researchers at the National Institutes of Health that was published this week in the American Journal of Human Genetics. The team conducted surveys to understand existing levels of genetic literacy, as well as how those results might inform efforts to improve our collective familiarity with concepts that are important for understanding genetic test results.

Interestingly, the scientists surveyed two distinct groups, getting responses from about 2,000 people in each: first, members of the general public; and second, people who were already participating in a genetic research study focused on autism. Because comfort with scientific concepts can vary by religious and political affiliations, the team also evaluated those aspects to understand how they might influence genetic literacy.

For the general public, the team found that genetic literacy rates had improved slightly compared to a previous survey conducted in 2013, signaling that there may be growing familiarity with basic genetic concepts among the population. Participants in the genetic research study had higher levels of genetic literacy, which makes sense given that this group was already interested enough in genetics to get involved in the study in the first place. (Alternatively, it could indicate that they become more fluent in genetics by participating in the study.)

Overall, scientists report that a number of traits were associated with higher levels of genetic literacy, such as more education and the feeling that genetic knowledge is important. For some parameters, people who described their political leanings as liberal had greater genetic literacy than those who reported politically conservative affiliations. While people who described themselves as more religious tended to have less genetic literacy overall, there was more fluency in genetics for religious respondents who said that if there was a conflict between their religion and science, they were more likely to believe the science.

Of course, the most important takeaway from a study like this is not about the current state of knowledge, but about how this information can be used to shape how to build a better knowledge foundation in the future. To that end, the authors of the study emphasize that confidence was the single most important determinant in a person’s genetic literacy: it was the variable most closely associated with predicting whether a respondent was comfortable with genetic concepts. “This suggests that improving confidence, not just providing knowledge, is an important part of increasing uptake of genetics in various applications,” the scientists write. Simply providing information — having doctors hand out brochures to their patients, for example — is not enough to improve genetic literacy in the general public.

“We hope that providers and scientists will take from these findings that a thoughtful approach is required to help people understand how to interact with new ideas and technologies in their daily lives,” Chris Gunter, senior author of the study, told Salisbury’s Take. “We all have identity and belief factors that control how we process new information, and genetics is no exception.”

Gunter added, “One next step is to test different types of interaction with community members and healthcare providers and genetics, including informational videos, prior to healthcare interactions. We believe addressing questions and concerns in a way that builds up confidence in one’s own knowledge, before a visit takes place, will lead to increased uptake of genetic technologies in situations where that is the right choice.”