Preferences of biobank participants for receiving actionable genomic test results: results of a recontacting study.

ABSTRACT:

Purpose

We sought to determine preferences of biobank participants whose samples were tested for clinically actionable variants but did not respond to an initial invitation to receive results.

Methods

We recontacted a subsample of participants in the Kaiser Permanente Washington/University of Washington site of the Electronic Medical Records and Genomics (eMERGE3) Network. The subsample had provided broad consent for their samples to be used for research but had not responded to one initial mailed invitation to receive their results. We sent a letter from the principal investigators with phone outreach. If no contact was made, we sent a certified letter stating our assumption that participant had actively refused. We collected reasons for declining.

Results

We reconta

SUBMITTER: Henrikson NB 

PROVIDER: S-EPMC8194390 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature