The National Institutes of Health on Sunday will launch a massive research initiative to gather the health records and DNA of 1 million people, with a focus on including communities underrepresented in medical research.
The All of Us Research Program aims to advance precision medicine. The initiative has $1.45 billion over 10 years in congressional funding, and the NIH will start making the data openly available to researchers in 2019.
In a conference call Tuesday morning, NIH Director Dr. Francis Collins announced the official launch date of the initiative, which comes after nearly a year of beta testing during which the agency improved communications, the website user experience and staffing for the project.
Collins and others from the agency emphasized that the initiative would involve an especially diverse cohort.
"There are far too many unanswered questions about health disparities that disproportionately affect underrepresented communities," said Dr. Dara Richardson-Heron, the NIH's chief engagement officer. "We can begin to chip away at health disparities."
To enroll people from these underrepresented communities, the NIH has partnered with community organizations, provider groups and medical centers to educate their members and patients.
The agency has also focused on building trust, as some potential participants may worry that their data could be used against them. Agency representatives have assured them that past "errors" in medical research shouldn't stymie future advances.
"Safeguarding participants' privacy and data is our top responsibility," All of Us Director Eric Dishman said.
The NIH will give patients access to their data. "We think of it as your right and your choice to have your information back if you choose," Dishman said.
The agency has learned from private initiatives that preceded it in the precision health and data space, including Geisinger's National Precision Health Initiative that launched in 2017.
But All of Us is distinct from other programs because of its scale and diversity, Dishman said. He's aiming for 70% to 75% of participants to come from communities underrepresented in medical research.
