作者: Hila Milo Rasouly , Nicole Cuneo , Maddalena Marasa , Natalia DeMaria , Debanjana Chatterjee
DOI: 10.1002/JGC4.1364
关键词: Psychology 、 Informed consent 、 Numeracy 、 Genetic testing 、 Test (assessment) 、 Genetic counseling 、 Gerontology 、 Literacy 、 Health literacy 、 Cohort
摘要: With the broader introduction of genomic medicine in research and clinical care, an increasing number persons are offered genetic testing. Many factors, including literacy, may impact utilization results by patients their families. We developed a rapid, self-administered measure called Genetic Literacy Fast Test (GeneLiFT). next evaluated association GeneLiFT scores with comprehension limitations participants undergoing testing NIH-sponsored eMERGE III study at Columbia University Irving Medical Center, New York. All underwent screening for variants 74 actionable genes associated adult-onset disorders. A diverse cohort 724 completed survey (60% women, 45% less than 40 years old, 53% self-reported White non-Hispanic ancestry). The was validated using known group differences based on education, health numeracy, questions assessing knowledge. identified multiple standard genetics terms, that is, jargon, not recognized more 50% (including actionability pathogenicity). Low 210 (29%), significantly poor understanding (p-values < 10-9 ). This independent numeracy levels, highlighting importance directly measuring literacy. literacy also low satisfaction informed consent process. is practical tool rapid assessment large studies or care. will allow future to efficiently assess role