Journal Article

Factors influencing NCGENES research participants’ requests for non–medically actionable secondary findings

Moore, Elizabeth, O’Daniel, Julianne M., Lin, Feng-Chang, Berg, Jonathan S., Roche, Myra I., Henderson, Gail E., Foreman, Ann Katherine M., Evans, James P., Powell, Bradford C., Rini, Christine, Griesemer, Ida, Lee, Kristy, Khan, Cynthia M.

2019

Overview

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’ intentions. Results Of the 76% who expressed intentions to learn results, only 42% made one or more requests. Overall, only 32% of the 155 eligible participants requested NMASF. Analyses support a plausible causal link between anticipated regret, intentions, and requests. Conclusions The discordance between participants’ expressed intentions and their actions provides insight into factors that influence patients’ preferences for genomic information that has little to no actionability. These findings have implications for the timing and methods of eliciting preferences for NMASF and suggest that decisions to learn this information have cognitive and emotional components.

• Publisher: Nature Publishing Group US,Elsevier Limited
• Subject: Adult / Aged / Biomedical and Life Sciences / Biomedicine / Consent / Consortia / Decision Making - ethics / Emotions / Exome / Female / Genetic counseling / Genetic Testing - ethics / Genetics / Genomes / Genomics / Genomics - methods / Health Knowledge, Attitudes, Practice / Health Personnel / High-Throughput Nucleotide Sequencing - ethics / Human Genetics / Humans / Incidental Findings / Informed consent / Intention / Laboratory Medicine / Male / Medicine / Middle Aged / Patient Preference - psychology / Patients / Studies / Whole genome sequencing / Whole Genome Sequencing - ethics / Whole Genome Sequencing - methods