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. 2020 Feb;22(2):381-388.
doi: 10.1038/s41436-019-0648-1. Epub 2019 Sep 6.

Regional models of genetic services in the United States

Celia Kaye  1 , Joann Bodurtha  2 , Mathew Edick  3 , Susanna Ginsburg  1 , Alisha Keehn  4 , Michele Lloyd-Puryear  1 , Debra Lochner Doyle  5 , Megan Lyon  1 , Robert Ostrander  6 , Matthew Taylor  7 ; National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee
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Regional models of genetic services in the United States

Celia Kaye et al. Genet Med. 2020 Feb.

Erratum in

  • Correction: Regional models of genetic services in the United States.
    Kaye C, Bodurtha J, Edick M, Ginsburg S, Keehn A, Lloyd-Puryear M, Doyle DL, Lyon M, Ostrander R, Taylor M; National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee. Kaye C, et al. Genet Med. 2020 Jan;22(1):241. doi: 10.1038/s41436-019-0662-3. Genet Med. 2020. PMID: 31551579 Free PMC article.

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.

Keywords: Public health; access to service; genetic services; regional models.

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Conflict of interest statement

The authors declare no conflicts of interest.

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