Factors influencing NCGENES research participants' requests for non-medically actionable secondary findings.

ABSTRACT:

Purpose

Genomic sequencing can reveal variants with limited to no medical actionability. Previous research has assessed individuals' intentions to learn this information, but few report the decisions they made and why.

Methods

The North Carolina Clinical Genomic Evaluation by Next Generation Exome Sequencing (NCGENES) project evaluated adult patients randomized to learn up to six types of non-medically actionable secondary findings (NMASF). We previously found that most participants intended to request NMASF and intentions were strongly predicted by anticipated regret. Here we examine discrepancies between intentions and decisions to request NMASF, hypothesizing that anticipated regret would predict requests but that this association would be mediated by participants' intent

SUBMITTER: Roche MI 

PROVIDER: S-EPMC6522134 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature