Preferences of parents from diverse backgrounds on genomic screening of apparently healthy newborns.
Genomic sequencing has been proposed as a strategy to expand newborn screening. Perspectives on genomic newborn screening from parents of diverse racial, ethnic, and socioeconomic backgrounds are needed to shape equitable implementation of this modality. We conducted 20 semi‐structured interviews (1...
| Publicado en: | Journal of Genetic Counseling Vol. 34; no. 2; pp. 1 - 11 |
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| Autores principales: | , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Apr2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=184767474&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 184767474 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Apr2025 vid: 34 iid: 2 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 184767474 180515968 184767474 184767474 10.1002/jgc4.1994 184767474 ppf: 1 ppct: 10 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Preferences of parents from diverse backgrounds on genomic screening of apparently healthy newborns. aug: au: Gold, Nina B. Omorodion, Jacklyn O. del Rosario, Maya C. Rivera‐Cruz, Greysha Hsu, Celeste Y. Ziniel, Sonja I. Holm, Ingrid A. affil: Division of Medical Genetics and Metabolism, Massachusetts General Hospital for Children, Boston Massachusetts,, USA sug: subj: Genetic Screening Neonatal Assessment Parents Psychosocial Factors Human Male Female Adolescence Adult Middle Age Infant, Newborn Thematic Analysis Focus Groups Funding Source Semi-Structured Interview United States Audiorecording Adolescent: 13-18 years Adult: 19-44 years Middle Aged: 45-64 years Infant, Newborn: birth-1 month Male Female ab: Genomic sequencing has been proposed as a strategy to expand newborn screening. Perspectives on genomic newborn screening from parents of diverse racial, ethnic, and socioeconomic backgrounds are needed to shape equitable implementation of this modality. We conducted 20 semi‐structured interviews (15 English, 5 Spanish) and seven focus groups (4 English, 3 Spanish) with parents from diverse backgrounds to assess their perspectives regarding which disorders and variants might be screened, data privacy, and barriers to pursuing specialized care. Parents felt that genomic newborn screening would provide them with improved understanding of their children's health and had the potential to yield health and personal benefits. Themes that became evident included: interest in childhood and family health risks, the value of emotional preparation and personal planning, understanding of uncertain and low‐risk results, concerns regarding data privacy, and concerns about support following the receipt of a positive newborn screening result. The expected benefits and concerns expressed by parents of diverse backgrounds regarding genomic newborn screening should guide future policy decisions. Their preferences should be considered prior to the implementation of large‐scale genomic newborn screening programs. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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