After enrolling participants in a test phase over the last year, the All of Us Research Program officially launched May 6 across the United States. A nationwide initiative of the National Institutes of Health (NIH), the program is being led in New York City by Columbia University Irving Medical Center, Weill Cornell Medicine, NYC Health + Hospitals Harlem, and NewYork-Presbyterian. NIH Director Francis Collins kicked off the program at Harlem’s Abyssinian Baptist Church at an opening day event that featured a community health fair and entertainment.
The New York City Consortium enrolled about 2,700 participants during the pilot phase. More than half of the enrollees are Hispanic, Asian, and African-American, communities that are traditionally underrepresented in large genomic studies. The NYC Consortium will receive federal grants totaling $60 million to sign up nearly 100,000 people over the next five years.
After soliciting feedback from participants and community leaders, the NYC Consortium plans to broaden its outreach to provide multilingual information at street fairs, church gatherings, and drugstores. Evelyn was asked to join a participant advisory board after she complained that the questionnaire she filled out wasn’t available in Spanish, an oversight that was soon corrected.
All of Us is designed to accelerate and broaden the use of precision medicine, which takes an individualized rather than a “one size fits all” approach to healthcare. It is an emerging approach to disease treatment, prevention, and care that considers differences in people’s lifestyles, environments, and biological makeup, including genes. But to make it work on a large scale, a massive trove of genetic and other health information is needed.
“I think we are undergoing a transformation in care where, increasingly, the interventions we offer will be provided in a way that’s predicated on the cause of disease in each individual patient,” says David Goldstein, Ph.D, and the lead principal investigator for the All of Us New York City Consortium, and the director of the Institute for Genomic Medicine at Columbia University Vagelos College of Physician and Surgeons.