How Friction Led to a More Intentional Stakeholder Feedback Model for a Federal Research Program: Lessons Learned from Returning DNA Results to Our Participants

Abstract

The All of Us Research Program is dedicated to accelerating health research to enable individualized prevention, treatment, and care for all of us. Since the program's beginning, we have committed to returning research results to our participants, including personalized DNA results. Given the diversity of our participant population and their varied experiences with medical research, we knew returning results would require empathy and diligence. To ensure an inclusive and accessible experience for all participants, we introduced intentional friction by slowing down and soliciting feedback from our participants and other stakeholders. This paper describes the evolution of the “intentional” model for stakeholder feedback that our program will implement and continually improve upon in future initiatives.