Researchers face challenges in retaining underserved populations for web-based research, a recent study finds.
The findings were published online July 28 in Genetics in Medicine.
A study that provided online genetic ancestry results to participants found that low-income Americans and people who did not finish high school were less likely to log in, said Sarah Hartz, MD, PhD, lead study author and assistant professor of psychiatry at the Washington University School of Medicine in St. Louis’ Department of Psychiatry.
Hartz said the results are troubling to her in light of the Precision Medicine Initiative, a national program launched under President Barack Obama in 2015 that is dedicated to recruiting a diverse group of Americans for genetic research, she said.
“We have to recruit these people,” Hartz told The Nation’s Health. “If we don’t it’s going to be worse…it will be very difficult to reduce disparities in the future.”
The research looked at over 960 people participating in a 2014 genetic study on smoking. Participants had their genetic ancestry analyzed and results were available later to view online. Participants were asked on a scale from 1 to 5, from “not at all” to “extremely,” of how interested they were about their results. They were later given personal accounts linked to email addresses. Seventeen percent did not have active email addresses and received help in creating one.
Sixty-four percent of participants said they were “very” or “extremely” interested, but of those people, only 16 percent logged into see their results. Within this group, people that lived below the federal poverty line or did not finish high school were less likely to log in, the study said.
Despite the fact participants had six months to see their results and received multiple reminders through different channels, disparities remained. For example, among those who had a high school education and lived above the poverty line, only 18 percent of blacks logged in, compared with 45 percent of whites, the study found.
While logging into sites online is a daily part of her life, Hartz said the results made her realize that what may seem trivial to her may be a chore for underserved populations. The next task for her team is to find a way to make participation easier.
“We just have to figure out what way they’re more connected and take advantage of that to include them,” Hartz said. “It’s an opportunity to be creative and find a strategy.”
For more information, visit www.nature.com/gim/journal/vaop/ncurrent/full/gim201691a.html.
- Copyright The Nation’s Health, American Public Health Association
