In its effort to collect health data from 1 million people across the country, the National Institutes of Health has made it a priority to involve low-income and minority populations that are often left out of medical research.
But the agency overseeing the "All of Us" campaign will have to overcome significant distrust within those communities to convince participants to hand over their sensitive personal information, including genomic data.
To do that, NIH officials are investing money and energy in outreach efforts to recruit participants in areas of the country that are traditionally overlooked, according to STAT. A truck that serves as “mobile engagement unit” is traveling the country with staffed with marketers and explainer videos designed to convince underserved communities that their data is worth handing over to the federal government.
The agency has also gained support from the descendants of Henrietta Lacks—a household name thanks to a recently released movie produced by HBO—whose cells were used for medical research without her consent. Experts like Robert Winn, M.D., the director of the University of Illinois Cancer Center and a principal investigator in the All of Us research project tell Stat that minority communities are traditionally wary of clinical research, especially at the government level.
“People are afraid of being experimented on,” Winn said.
NIH has already taken significant steps to diversify its database by awarding $1.7 million to four groups with ties to various underrepresented populations, including economically disadvantaged senior citizens, Hispanics and Latinos, African Americans and LGBT communities. Research shows those populations face significant gaps in medical care and face notable health disparities.
NIH launched the beta phase of the All of Us program in June, rolling out partnerships with several major healthcare systems, including the University of Pittsburgh Medical Center.