Regional models of genetic services in the United States

Purpose: To outline structures for regional genetic services support centersthat improve access to clinical genetic services. Methods: A workgroup (WG) and advisory committee (AC) (1) conducted acomprehensive review of existing models for delivering health care through aregional infrastructure, especially for genetic conditions; (2) analyzed datafrom a needs assessment conducted by the National Coordinating Center (NCC) todetermine important components of a regional genetic services support center;and (3) prioritized components of a regional genetic services supportsystem. Results: Analysis of identified priorities and existing regional systems ledto development of eight models for regional genetic services support centers. Ahybrid model was recommended that included an active role for patients andfamilies, national data development and collection, promotion of efficient andquality genetic clinical practices, healthcare professional support fornongeneticists, and technical assistance to healthcare professionals. Conclusion: Given the challenges in improving access to genetic services,especially for underserved populations, regional models for genetic servicessupport centers offer an opportunity to improve access to genetic services tolocal populations. Although a regional model can facilitate access, somesystemic issues exist—e.g., distribution of a workforce trained in genetics—thatregional genetic services support centers cannot resolve.