About the All of Us Research Program and the Return of Health-Related DNA Results: A Health Communications Perspective

Background:

The NIH All of Us Research Program is an ambitious initiative to collect health data from at least one million participants who reflect the diversity of the United States. This information is made available to registered researchers in a secure, cloud-based database. Currently, All of Us has over 625,000 enrolled participants. Around 80% of All of Us participants are from communities traditionally underrepresented in biomedical research (UBR). UBR domains include race, ethnicity, gender identity, sexual orientation, education, disability, and socioeconomic and health status.

Program background:

All of Us leverages health communications to involve our participants in health research and help them learn more about their own health. One way All of Us achieves this is through the return of health information back to participants from blood or saliva samples they provided. In December 2022, All of Us began returning health-related DNA results to participants who told us they wanted their results. Participants can choose to receive two reports: one on pharmacogenetics and another on hereditary disease risk based on 59 genes associated with medically actionable diseases.

The presenters will give an overview of the initiative to return health-related DNA results to a large, diverse, national cohort. They will provide a communications and user experience perspective on the challenges and benefits of returning DNA results to participants and the processes they implemented to create robust equity-centered communications to support this initiative.

Evaluation Methods and Results:

Returning health-related DNA results presents a unique challenge to All of Us due to the scope and difficulty of communicating this complex health information. Our goal for this campaign was to design an equity-centered experience that was transparent, informative, easy to understand, accessible, and representative of our diverse participant cohort. We wanted participants to feel confident in their decision to receive, or not receive, DNA results by clearly communicating the content of each report, the risks associated with DNA results, and the health information participants could gain by choosing to receive DNA results. We did this by involving stakeholders in every stage of the communication process, from development to implementation and evaluation. Our stakeholders helped review content, took part in usability and comprehension testing, and were members of our Cultural Awareness Committee. We also launched an awareness-building campaign, known as the Genomics Outreach Campaign, to provide participants with regular updates towards the return of DNA results, understand the content of our health-related DNA reports, and share information about genomics topics

Conclusions:

We found that involving stakeholder perspectives early using multiple feedback methods helped us reduce barriers and increase our reach.

Implications for research and/or practice:

Though our initiative to return health-related DNA results reaches a large, diverse, national cohort, the successes and lessons learned from developing equity-centered health communications can be applied to any sized program that needs to communicate complex health information to a diverse audience.