| Autor: |
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 |
| Jazyk: |
angličtina |
| Rok vydání: |
2024 |
| Předmět: |
|
| Zdroj: |
HGG Advances, Vol 5, Iss 3, Pp 100321- (2024) |
| Druh dokumentu: |
article |
| ISSN: |
2666-2477 |
| DOI: |
10.1016/j.xhgg.2024.100321 |
| Popis: |
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 |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
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