NIH’s landmark ‘All of Us’ genomic dataset features racial or ethnic groups historically underrepresented in research
UC Davis Health is one of six California health systems collaborating to implement All of Us. The consortium of partners across the U.S is seeking one million or more people to participate.
About 50% of the publicly available data is from individuals who identify with racial or ethnic groups historically underrepresented in research.
“This new dataset is an exciting milestone for precision medicine. Having genomic information from diverse communities will allow for discoveries to reduce persistent health disparities,” said Alexander D. Borowsky, professor of pathology and laboratory medicine and co-leader of the study at UC Davis Health.
UC Davis has enrolled 7,115 local participants in the program since 2018. About 70% of them are from underrepresented communities, and 36% are from racial/ethnic minorities.
“Until now, over 90% of participants from large genomics studies have been of European descent. The lack of diversity in research has hindered scientific discovery,” said Josh Denny, M.D., chief executive officer of the All of Us Research Program. “
All of Us participants are leading the way toward more equitable representation in medical research through their involvement. And this is just the beginning. Over time, as we expand our data and add new tools, this dataset will become an indispensable resource for health research.”
The genomic data is available via a cloud-based platform, the All of Us Research Workbench, and includes genotyping arrays from 165,000 participants. Whole genome sequencing provides information about almost all of an individual’s genetic makeup, while genotyping arrays, the more commonly used genetic testing approach, capture a specific subset of the genome.
Having genomic information from diverse communities will allow for discoveries to reduce persistent health disparities.
In addition to the genomic data, the workbench contains information from many of the participants’ electronic health records, Fitbit devices and survey responses. The platform also links to data from the Census Bureau’s American Community Survey to provide more details about the communities where participants live.
This combination of data will allow researchers to better understand how genes can cause or influence diseases in the context of other health determinants. The goal is to enable more precise approaches to health care for all populations. To protect participants’ privacy, the program has removed all direct identifiers from the data and upholds strict requirements for researchers seeking access.
People of every race, ethnicity, sex, gender and sexual orientation participate in the All of Us program. Enrollment is open to all adults who live in the United States, except for those in prison or unable to give consent.
People who join share information about their health, habits, and what it is like where they live. By looking for patterns, researchers may learn more about what affects people’s health.
The program has no health limitations, as it welcomes healthy people and those with different kinds of health conditions. All needed appointments for participation are free, and no health insurance is required. Please keep in mind that All of Us is a research program and does not provide medical care.