Regional models of genetic services in the United States.
Public health
access to service
genetic services
regional models
Journal
Genetics in medicine : official journal of the American College of Medical Genetics
ISSN: 1530-0366
Titre abrégé: Genet Med
Pays: United States
ID NLM: 9815831
Informations de publication
Date de publication:
02 2020
02 2020
Historique:
received:
05
12
2018
accepted:
22
08
2019
pubmed:
7
9
2019
medline:
12
1
2021
entrez:
7
9
2019
Statut:
ppublish
Résumé
To outline structures for regional genetic services support centers that improve access to clinical genetic services. A workgroup (WG) and advisory committee (AC) (1) conducted a comprehensive review of existing models for delivering health care through a regional infrastructure, especially for genetic conditions; (2) analyzed data from a needs assessment conducted by the National Coordinating Center (NCC) to determine important components of a regional genetic services support center; and (3) prioritized components of a regional genetic services support system. Analysis of identified priorities and existing regional systems led to development of eight models for regional genetic services support centers. A hybrid model was recommended that included an active role for patients and families, national data development and collection, promotion of efficient and quality genetic clinical practices, healthcare professional support for nongeneticists, and technical assistance to healthcare professionals. Given the challenges in improving access to genetic services, especially for underserved populations, regional models for genetic services support centers offer an opportunity to improve access to genetic services to local populations. Although a regional model can facilitate access, some systemic issues exist-e.g., distribution of a workforce trained in genetics-that regional genetic services support centers cannot resolve.
Identifiants
pubmed: 31488898
doi: 10.1038/s41436-019-0648-1
pii: S1098-3600(21)01287-9
pmc: PMC7000321
doi:
Types de publication
Journal Article
Research Support, U.S. Gov't, P.H.S.
Langues
eng
Sous-ensembles de citation
IM
Pagination
381-388Subventions
Organisme : Maternal and Child Health Bureau
ID : #U22MC24100
Pays : International
Commentaires et corrections
Type : ErratumIn
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