Education and Consent for Population-Based DNA Screening: A Mixed-Methods Evaluation of the Early Check Newborn Screening Pilot Study.
DNA screening
electronic consent
evaluation
informed consent
newborn screening
participant attitudes
Journal
Frontiers in genetics
ISSN: 1664-8021
Titre abrégé: Front Genet
Pays: Switzerland
ID NLM: 101560621
Informations de publication
Date de publication:
2022
2022
Historique:
received:
07
03
2022
accepted:
07
04
2022
entrez:
1
6
2022
pubmed:
2
6
2022
medline:
2
6
2022
Statut:
epublish
Résumé
A challenge in implementing population-based DNA screening is providing sufficient information, that is, understandable and acceptable, and that supports informed decision making. Early Check is an expanded newborn screening study offered to mothers/guardians whose infants have standard newborn screening in North Carolina. We developed electronic education and consent to meet the objectives of feasibility, acceptability, trustworthiness, and supporting informed decisions. We used two methods to evaluate Early Check among mothers of participating infants who received normal results: an online survey and interviews conducted via telephone. Survey and interview domains included motivations for enrollment, acceptability of materials and processes, attitudes toward screening, knowledge recall, and trust. Quantitative analyses included descriptive statistics and assessment of factors associated with knowledge recall and trust. Qualitative data were coded, and an inductive approach was used to identify themes across interviews. Survey respondents (
Identifiants
pubmed: 35646095
doi: 10.3389/fgene.2022.891592
pii: 891592
pmc: PMC9133477
doi:
Types de publication
Journal Article
Langues
eng
Pagination
891592Subventions
Organisme : NCATS NIH HHS
ID : U01 TR001792
Pays : United States
Informations de copyright
Copyright © 2022 Peay, Gwaltney, Moultrie, Cope, Boyea, Porter, Duparc, Alexander, Biesecker, Isiaq, Check, Gehtland, Bailey and King.
Déclaration de conflit d'intérêts
The authors from RTI International report current funding from the Centers for Disease Control and Prevention, the National Institutes of Health, Sarepta Therapeutics, and Janssen Pharmaceuticals. The authors from Wake Forest School of Medicine report no conflict of interest.
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