دورية أكاديمية

Evaluating parental personal utility of pediatric genetic and genomic testing in a diverse, multilingual population

التفاصيل البيبلوغرافية
العنوان: Evaluating parental personal utility of pediatric genetic and genomic testing in a diverse, multilingual population
المؤلفون: Priya N. Marathe, Sabrina A. Suckiel, Katherine E. Bonini, Nicole R. Kelly, Laura Scarimbolo, Beverly J. Insel, Jacqueline A. Odgis, Monisha Sebastin, Michelle A. Ramos, Miranda Di Biase, Katie M. Gallagher, Kaitlyn Brown, Jessica E. Rodriguez, Nicole Yelton, Karla Lopez Aguiñiga, Michelle A. Rodriguez, Estefany Maria, Jessenia Lopez, Randi E. Zinberg, George A. Diaz, John M. Greally, Noura S. Abul-Husn, Laurie J. Bauman, Bruce D. Gelb, Melissa P. Wasserstein, Eimear E. Kenny, Carol R. Horowitz
المصدر: HGG Advances, Vol 5, Iss 3, Pp 100321- (2024)
بيانات النشر: Elsevier, 2024.
سنة النشر: 2024
المجموعة: LCC:Genetics
مصطلحات موضوعية: genomic testing, pediatric genetic testing, personal utility, parents, diversity, genetic testing, Genetics, QH426-470
الوصف: Summary: There is increasing evidence of the clinical utility of genetic and genomic testing (GT); however, factors influencing personal utility of GT, especially in diverse, multilingual populations, remain unclear. We explored these factors in a diverse cohort of parents/guardians (participants) whose children received clinical GT through the NYCKidSeq program. A total of 847 participants completed surveys at baseline, post-results disclosure, and 6 months (6m) post-results. The largest population groups were Hispanic/Latino(a) (48%), White/European American (24%), and Black/African American (16%). Personal utility was assessed using the Personal Utility (PrU) scale, adapted for pediatric populations and included on the surveys. Three PrU subscales were identified using factor analysis: practical, educational, and parental psychological utility. Overall personal utility summary score and the three subscales significantly decreased after receiving results and over time. Hispanic/Latino(a) participants identified greater overall personal utility than European American and African American participants at all time points (p
نوع الوثيقة: article
وصف الملف: electronic resource
اللغة: English
تدمد: 2666-2477
Relation: http://www.sciencedirect.com/science/article/pii/S2666247724000605; https://doaj.org/toc/2666-2477
DOI: 10.1016/j.xhgg.2024.100321
URL الوصول: https://doaj.org/article/d462a943c78e428ea05a8be80988b67b
رقم الأكسشن: edsdoj.462a943c78e428ea05a8be80988b67b
قاعدة البيانات: Directory of Open Access Journals
الوصف
تدمد:26662477
DOI:10.1016/j.xhgg.2024.100321