Study Finds Low Engagement in Internet-Based Research in Underrepresented Population
A large study by Hartz et al examining whether Internet-based research approaches effectively engage participants from diverse racial and socioeconomic backgrounds has found engagement in this type of research to be low among participants without a high school education, those living below the federal poverty level, and African Americans, despite high initial interest. According to the study authors, "explicit strategies should be developed to increase diversity in Internet-based research." The study was published in Genetics in Medicine.
Study Methodology
Researchers recruited 967 people in St. Louis, Missouri, enrolled in a genetic study of smoking. All participants were current smokers and had to be able to consent to participation in the study in English. After the informed-consent process, participants were given a brief, 30-minute, semistructured, computer-assisted interview to assess baseline demographics, substance-use history, and health-care literacy, as measured by the Rapid Estimate of Adult Literacy in Medicine—Revised.
Genetic analysis was performed by 23andMe. As an incentive to enroll in the study, participants were offered access to their genetic ancestry results through the 23andMe website. After the assessment was completed, participants donated a saliva sample and were assisted by the research staff in creating a personal account on the 23andMe website.
A total of 4 to 6 weeks following participation in the study, participants were informed that their ancestry results were ready and given instructions on how to access them.
Study Findings
Of the 967 participants, 64% said they were “very” or “extremely” interested in their genetic ancestry results. Among interested participants, individuals with a high school diploma (n = 473) viewed their results 19% of the time, relative to 4% of the 145 participants without a diploma (P < .0001). Similarly, 22% of participants with a household income above the federal poverty level (n = 286) viewed their results, relative to 10% of the 314 participants living below the federal poverty level (P < .0001). Among interested participants both with a high school degree and living above the poverty level, self-identified whites were more likely to view results than self-identified African Americans (P < .0001), and females were more likely to view results than males (P = .0007).
“In an underserved population, engagement in Internet-based research was low despite high reported interest. This suggests that explicit strategies should be developed to increase diversity in Internet-based research,” concluded the study authors.
Sarah M. Hartz, MD, PhD, of Washington University School of Medicine in St. Louis, is the corresponding author of this study.
This study was funded by the National Institutes of Health and the Foundation for Barnes-Jewish Hospital.
Laura J. Bierut, MD, is listed as an inventor of “Markers for Addiction” covering the use of certain single-nucleotide polymorphisms in determining the diagnosis, prognosis, and treatment of addiction. The other study authors declared no conflicts of interest.
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