Factors influencing NCGENES research participants' requests for non-medically actionable secondary findings.
Adult
Aged
Decision Making
/ ethics
Emotions
Exome
Female
Genetic Testing
/ ethics
Genomics
/ methods
Health Knowledge, Attitudes, Practice
Health Personnel
High-Throughput Nucleotide Sequencing
/ ethics
Humans
Incidental Findings
Intention
Male
Middle Aged
Patient Preference
/ psychology
Patients
Whole Genome Sequencing
/ ethics
anticipated regret
informed consent
non-medically actionable secondary findings
research genomic sequencing
Journal
Genetics in medicine : official journal of the American College of Medical Genetics
ISSN: 1530-0366
Titre abrégé: Genet Med
Pays: United States
ID NLM: 9815831
Informations de publication
Date de publication:
05 2019
05 2019
Historique:
received:
06
04
2018
accepted:
27
08
2018
pubmed:
22
9
2018
medline:
14
2
2020
entrez:
22
9
2018
Statut:
ppublish
Résumé
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. 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. 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. 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.
Identifiants
pubmed: 30237575
doi: 10.1038/s41436-018-0294-z
pii: S1098-3600(21)01470-2
pmc: PMC6522134
mid: NIHMS1507902
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
1092-1099Subventions
Organisme : NHGRI NIH HHS
ID : U01 HG006487
Pays : United States
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