written by Yvette Craig, AoU Communications Manager
The National Institutes of Health All of Us Research Program hit a major milestone when the first set of DNA information was provided to scientists in the All of Us Researcher Workbench. The constellation of data, contributed by nearly half a million participants, barely scratches the surface of progressive health research and its role in addressing health disparities, advancing precision medicine, and potentially improving health outcomes.
The Workbench is the centerpiece of the All of Us hub, the online destination where users can explore data — including physical measurements, surveys, electronic health records (EHRs), and genomic data contributed by more than 496,000 participants. The Workbench also includes biosamples from roughly 365,000 participants.
The genomic data is available via a cloud-based workbench platform which brings researchers both data and analysis tools, while ensuring security and appropriate data use. Integrated help and educational resources are also provided through the Workbench User Support Hub.
With this release of genomic data, All of Us now ranks among other large genomic research efforts worldwide, including the UK Biobank, the Million Veteran Program, and the NIH Trans-Omics for Precision Medicine (TOPMed) program. As of June 2022, more than 2,000 researchers have gained access, more than 1,500 research projects have been launched, and more than 350 institutions have signed on to the Data Use and Registration Agreement. Currently, 18 University of Wisconsin and four Medical College of Wisconsin researchers have active projects on the Workbench.
Dorothy Farrar-Edwards, Co-Principal Investigator for the All of Us Research UW, said until now, important medical research often draws from a limited pool of participants and overlooks many others – especially people of different racial and ethnic backgrounds. The lack of diversity in research has curtailed scientific discovery. The diversity of All of Us participants is expected to to shift the landscape of genomics research. Farrar-Edwards notes,
Access to high-quality research data and analytical tools is fundamental for investigators. University of Wisconsin researchers and team members can benefit from the Workbench to develop strategies for disease prevention, advance precision medicine, collaborate with colleagues, and improve patients’ lives.
Of particular importance to health equity researchers, the cornerstone of this nationally historic research project is building a large group of participants who reflect the diversity of the country. Alongside more diverse participants, building a robust All of Us researcher community with investigators representing a wide variety of experiences and expertise will also improve the impact of research and return meaningful value to participants.
All told, 80% of AoU participants come from groups that have been historically left out of medical research. Genetic data can be paired with medical records, survey data, Fitbit information, and other data to help researchers more fully understand a wide variety health conditions. This data will enable researchers to address yet unanswerable questions about health and disease, leading to new breakthroughs and advancing discoveries to reduce persistent health disparities.
Beyond making genomic data available for research, All of Us participants will have the opportunity to receive personal DNA results at no personal cost. So far, the program has offered genetic ancestry and trait results to more than 100,000 participants. Plans are underway to share health-related DNA results on hereditary disease risk and medication-gene interactions later this year.
Researchers can learn more about All of Us data and resources or register for access at ResearchAllofUs.org.
Potential participants can learn more about getting involved by visiting JoinAllofUs.org.