All of Us Research Program Returns Genetic Health-related Results to Participants
Milwaukee, Jan. 12, 2023 – The National Institutes of Health’s All of Us Research Program has started returning personalized, actionable health-related DNA results to more than 155,000 participants nationwide. This marks a major milestone for the program, delivering on its promise to share information and return value to participants.
“Knowledge is powerful. By returning health-related DNA information to participants, we are changing the research paradigm, turning it into a two-way street – fueling both scientific and personal discovery that could help individuals navigate their own health,” said Josh Denny, MD, MS, chief executive officer of the All of Us Research Program. “This type of partnership with our participants is crucial for building trust and fulfilling the commitment we made to drive research that can offer meaningful insights for all.”
Participants can choose which health-related results they want to receive, if any.
“Every person who has joined the All of Us Research Program and chosen to share health information is helping to support scientific discoveries. They also have a chance to learn more about their own health,” said Jeffrey Whittle, MD, co-principal investigator for the All of Us Research Program at Froedtert & the Medical College of Wisconsin.
The program’s Hereditary Disease Risk report includes 59 genes and variants that are associated with serious, medically-actionable health conditions. These genes are linked with an increased risk of specific cancers, heart conditions, blood disorders, and more. The program anticipates that 2-3% of participants will receive a result showing a pathogenic or likely pathogenic variant linked in one of the genes included in the report. Those whose results show they may have an increased risk of a serious health condition will be offered a clinical DNA test through the program’s genetic counseling resource, conducted outside the program at no cost. This clinical DNA test will be conducted by Color Health, which provides genetic counseling services to All of Us participants.
Participants can also choose to receive a Medicine and Your DNA report that includes seven genes known to affect how the body processes certain medicines. Nearly all participants will learn more about how their bodies process medicines based on these results, however, participants are advised to consult a health care provider and undergo the appropriate clinical testing prior to considering changes to medications.
All of Us works with a consortium of national and community partners across the U.S. to help reach people and collect DNA samples and data from surveys, physical measurements, electronic health records, and wearable devices. The program’s Data and Research Center, Participant Technology Systems Center, and Genetic Counseling Resource worked closely with the program and other partners to develop the process for returning health-related genetic results. The program’s Biobank and Genome Centers collaborated to generate the genomic data that informs the personalized results.
“Our DNA can’t predict our future. But it can give us important information and help us take steps that can lead to better health,” said Zeno Franco, PhD, co-principal investigator for the All of Us Research Program at Froedtert & the Medical College of Wisconsin.
The mission of the All of Us Research Program is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us. The program will partner with at least 1 million people who reflect the diversity of the U.S. to build one of the largest, most diverse biomedical data resources of its kind. Data is made available to researchers to drive scientific discoveries into the biological, environmental, and behavioral factors that influence health and disease.
Join All of Us
All of Us aims to speed up health research and medical breakthroughs through NIH’s Precision Medicine Initiative. The goal of precision medicine is to find ways to make health care more tailored to each person based on their individual differences. The program is open to everyone, both healthy and sick, from all communities. Unlike a single research study focused on a specific disease or community, All of Us will create a research resource to inform thousands of studies covering a wide range of health conditions. This information could help researchers learn more about different diseases and treatments and improve health for generations to come.
To learn more or to join, visit the All of Us Research Program website.
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