Relying on the internet to recruit and engage research participants, particularly participants from underrepresented groups, might not be as simple as it seems, a new study from Washington University in St. Louis researchers suggests.
First author Sarah Hartz and her colleagues recruited 967 participants for a genetic study of smoking from the St. Louis area using a combination of flyers, word of mouth, the university participant registry, Facebook, and Craigslist. As part of the study, the participants were also offered access to their genetic ancestry results from 23andMe.
As Hartz and her colleagues report in Genetics in Medicine, although 64 percent of the participants said they were extremely or very interested in their genetic ancestry results, only 12 percent later viewed their results. Participants were informed that their results were ready via email, telephone, and first-class mail. If they hadn't logged into their account within six months, the participants were classified as not having viewed their results.
The researchers note that education, socioeconomic status, gender, and race/ethnicity appear to be associated with viewing or not viewing results. For example, even if participants said they were interested in their results, if they hadn't finished high school or lived below the federal poverty line, the researchers found they rarely looked at their genetic ancestry results. The researchers also report that African Americans were less likely to look at their results than European Americans.
This, Hartz and her colleagues say, might have implications for large studies like the Precision Medicine Initiative that are increasingly relying on the internet to engage and recruit research participants.
"We don't know what the barriers are," Hartz says in a statement. "We don't know whether some people don't have easy access to the internet or whether there are other factors, but this is not good news as more and more research studies move online because many of the same groups that have been under-represented in past medical research would still be missed going forward."