Facilitating return of actionable genetic research results from a biobank repository: Participant uptake and utilization of digital interventions.

ABSTRACT: Research participants report interest in receiving genetic research results. How best to return results remains unclear. In this randomized pilot study, we sought to assess the feasibility of returning actionable research results through a two-step process including a patient-centered digital intervention as compared with a genetic counselor (GC) in the Penn Medicine biobank. In Step 1, participants with an actionable result and procedural controls (no actionable result) were invited to digital pre-disclosure education and provided options for opting out of results. In Step 2, those with actionable results who had not opted out were randomized to receive results via a digital disclosure intervention or with a GC. Five participants (2%) opted out of results after Step 1. After both steps, 5

SUBMITTER: Phung L 

PROVIDER: S-EPMC11415769 | biostudies-literature | 2024 Oct

REPOSITORIES: biostudies-literature