Factors influencing NCGENES research participants- requests for non-medically actionable secondary findings |
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| Institution: | 1. Department of Pediatrics, University of North Carolina, Chapel Hill, NC, USA;2. Department of Genetics, University of North Carolina, Chapel Hill, NC, USA;3. Center for Genomics and Society, University of North Carolina, Chapel Hill, NC, USA;4. Department of Health Behavior, University of North Carolina, Chapel Hill, NC, USA;5. Econometrica, Inc.Bethesda, MD, USA;6. Blue Cross and Blue Shield of North Carolina, Durham, NC, USA;7. Department of Biostatistics, University of North Carolina, Chapel Hill, NC, USA;8. Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA;9. Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA;10. ohn Theuer Cancer Center, Hackensack University Medical Center, Hackensack, NJ, USA |
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| Abstract: | PurposeGenomic 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.MethodsThe 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.ResultsOf 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.ConclusionsThe 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. |
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