Participant choices for return of genomic results in the eMERGE Network.

ABSTRACT:

Purpose

Secondary findings are typically offered in an all or none fashion when sequencing is used for clinical purposes. This study aims to describe the process of offering categorical and granular choices for results in a large research consortium.

Methods

Within the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network, several sites implemented studies that allowed participants to choose the type of results they wanted to receive from a multigene sequencing panel. Sites were surveyed to capture the details of the implementation protocols and results of these choices.

Results

Across the ten eMERGE sites, 4664 participants including adolescents and adults were offered some type of choice. Categories of choices offered and methods for selecting

SUBMITTER: Hoell C 

PROVIDER: S-EPMC8477450 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature