All of Us Returns Genetic Health Results to Participants
NIH’s All of Us Research Program has begun returning personalized health data to more than 155,000 participants, with reports detailing whether participants have an increased risk for specific health conditions and how their body might process certain medications. This marks a major milestone for the program, delivering on its promise to share valuable health information with participants.
“By returning health-related DNA information to participants, we are…fueling both scientific and personal discovery that could help individuals navigate their own health,” said Dr. Josh Denny, All of Us chief executive officer. “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.”
All of Us aims to partner with at least 1 million people who reflect the diversity of the United States to accelerate medical breakthroughs.
About 80% of All of Us participants represent communities that have been historically underrepresented in medical research, and nearly 50% of All of Us participants identify with a racial or ethnic minority group.
The program started returning genetic ancestry and trait results to participants in December 2020. So far, the program has offered such results to more than 175,000 participants and continues to return about 6,000 results each month.
In this first phase of returning health-related DNA results, participants who provided a blood sample and consented to receive genomic information are individually invited to receive their results. They can choose which health-related results they want, if any, and get an alert when their results are ready.
The program’s Hereditary Disease Risk report, informed by recommendations from the American College of Medical Genetics and Genomics, includes 59 genes and variants associated with serious, medically actionable health conditions. These genes are linked with an increased risk of specific cancers, heart conditions, blood disorders and more.
Participants 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 of the program at no cost.
Additionally, genetic counselors are available to meet with participants and their family members or health care provider to discuss and interpret their results.
“Returning information in research programs is the ethical choice, but must be done responsibly and equitably,” said Dr. Alicia Zhou, chief science officer of Color Health, the genetic counseling resource for the program. “All of Us is setting a new precedent for longitudinal research programs.”
All of Us works with a consortium of national and community partners across the United States to help reach people and collect DNA samples and data from surveys, physical measurements, electronic health records and wearable devices.
The program plans to increase the number of participants who are invited to receive genetic health-related results throughout 2023, including new participants who join the program.