Regional models of genetic services in the United States

the National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee

Research output: Contribution to journalArticle

Abstract

Purpose: To outline structures for regional genetic services support centers that improve access to clinical genetic services. Methods: 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. Results: 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. Conclusion: 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.

Original languageEnglish (US)
JournalGenetics in Medicine
DOIs
StateAccepted/In press - Jan 1 2019

Fingerprint

Genetic Services
Delivery of Health Care
Professional Practice
Needs Assessment
Vulnerable Populations
Advisory Committees

Keywords

  • access to service
  • genetic services
  • Public health
  • regional models

ASJC Scopus subject areas

  • Genetics(clinical)

Cite this

the National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee (Accepted/In press). Regional models of genetic services in the United States. Genetics in Medicine. https://doi.org/10.1038/s41436-019-0648-1

Regional models of genetic services in the United States. / the National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee.

In: Genetics in Medicine, 01.01.2019.

Research output: Contribution to journalArticle

the National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee 2019, 'Regional models of genetic services in the United States', Genetics in Medicine. https://doi.org/10.1038/s41436-019-0648-1
the National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee. Regional models of genetic services in the United States. Genetics in Medicine. 2019 Jan 1. https://doi.org/10.1038/s41436-019-0648-1
the National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee. / Regional models of genetic services in the United States. In: Genetics in Medicine. 2019.
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