Brigham clinicians are leveraging advancements in genomics to help patients lead healthier lives and answer questions about future risk. These clinical advancements share a common foundation: research. But historically, most genomic research studies have included mainly people of European ancestry with very little representation of other races or ethnicities. Through national research efforts like the All of Us Research Program, Brigham investigators and their collaborators are making genomic research more meaningful, equitable and impactful for all patients at the Brigham and around the world.
The All of Us Research Program, part of the National Institutes of Health (NIH), seeks to include environmental, medical and genetic data from more than 1 million people, creating the world’s largest and most diverse databases for health research in a longitudinal cohort study. To date, the program has enrolled over 341,000 people nationwide, and Brigham investigators have helped to enroll over 21,000 participants in New England. Locally, 38 percent of those enrolled are from a racial or ethnic minority, and 73 percent are from groups that have been previously underrepresented in medical research including sexual and gender minorities, people with low income, older people, people with disabilities, and people who live in rural areas.
The program has drawn together experts across the Brigham who are thinking about the intersections of genetics, environmental factors, epidemiology, health equity and precision medicine. All of Us New England, the regional enrollment site and partner to All of Us, is based at Massachusetts General Hospital, Brigham and Women’s Hospital and Boston Medical Center with enrollment sites at these hospitals and many others throughout the region.
“Through All of Us New England, Brigham investigators are pursuing projects leveraging data from a diverse cohort related to hypertension and obesity, among other medical research areas,” said Elizabeth Karlson, MD, MS, a principal investigator for the project and director of Rheumatic Disease Epidemiology at the Brigham.
Brigham physician investigators are also serving in leadership roles in the national program. Cheryl Clark, MD, ScD, director of Health Equity Research and Intervention at the Brigham’s Center for Community Health and Healthy Equity, is chair of the All of Us Social Determinants of Health Task Force.
“One of the most inspiring elements of the program is the dedication to health equity,” said Clark. “All of Us is a resource that will make it possible to do work that advances science for diverse populations, and it also compels us to develop novel methods to make research more inclusive.”
Robert C. Green, MD, MPH, director of the Genomes2People Research Program and the Brigham Preventive Genomics Clinic, advises the All of Us program on issues related to genomics and the return of genomic results.
“Thanks to work we have piloted around return of genomic results at Brigham, we have been able to assist the national All of Us program on the critical design and consent issues for returning genomic results across the nation,” said Green.
Access to the All of Us Research Program data
Earlier this year, the NIH released a preliminary version of its interactive Data Browser to provide a first look at the data that participants are sharing for health research. Participants, researchers and other members of the public can use the online tool to learn more about the All of Us participant community and explore summary data.
In time, the program seeks to expand the information in the Data Browser and offer more detailed breakdowns of data by various categories, such as race and ethnicity and gender identity. These enhancements may provide a fuller picture of the diversity of the participant community and help advance research on health disparities.
This spring, the program plans to launch the Researcher Workbench, making its initial set of data available for in-depth analysis. Researchers seeking access will need to register, complete All of Us researcher ethics training and sign a data use agreement. More information about the data access policies and application process will be available in the coming months. In the meantime, the Data Browser can allow researchers to generate hypotheses and begin assessing the potential of All of Us data for their studies.