All of Us Research Program Returns Genetic Results to Participants

The National Institutes of Health's (NIH) All of Us Research Program announced that it has begun returning personalized health-related DNA results to more than 155,000 participants, detailing each individual’s risk for certain health conditions and how their body might process some medications.

According to the press release, these reports are part of an effort 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, CEO of the All of Us Research Program, in the press release. “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.” 

In this first phase of returning participants’ results, individuals who provided a blood sample and consented to receive genomic information were provided with their results. Participants could choose which, if any, of their health-related results they want to receive. Those choosing to receive results will get an alert once their results are ready.

Participants, their family members, and healthcare providers can meet with a genetic counselor to discuss and interpret results once they are available.

Participants can also choose to receive the program’s Hereditary Disease Risk report, which includes 59 genes and variants associated with serious, medically actionable health conditions, such as cancer, heart conditions, blood disorders, and others.

Participants can also choose to receive a Medicine and Your DNA report, which includes seven genes that are known to affect how the body processes certain medicines.

“Our participants care about their health as well as medical research. We strive to share information with them in a responsible, accessible, and impactful way that honors their trust in us and provides them with tools to continue to learn more about their own health,” said Karriem Watson, chief engagement officer of the All of Us Research Program, in the press release. “This intentional focus brings us one step closer to advancing health equity for our participants and can serve as a catalyst for change to increase representation in medical research.”

The press release states that All of Us started returning genetic ancestry and trait results to participants in December 2020 and has offered these results to more than 175,000 participants to date. The program returns about 6,000 results each month and plans to increase the number of participants invited to receive genetic health-related results throughout 2023, including new participants who join the program.

The All of Us Research Program is a large-scale effort to collect and study US health data to support population health across the country. The program began national enrollment in 2018 and aims to gather data from 1 million or more Americans over the next decade. The program’s dataset contains clinical, genomic, and participant-reported information that researchers can use to study various aspects of health.

In June, the program expanded its dataset to support the study of long COVID, social determinants of health (SDOH), and health disparities by making health data from 20,000 people who have had SARS-CoV-2 available to researchers in the US.