Regional models of genetic services in the United States |
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| Affiliation: | 1. American College of Medical Genetics and Genomics, Bethesda, MD, USA;2. Johns Hopkins School of Medicine, McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University, Baltimore, MD, USA;3. Michigan Public Health Institute, Okemos, MI, USA;4. Washington State Department of Health, Kent, WA, USA;5. Valley View Family Practice, Rushville, NY, USA;6. University of Colorado School of Medicine, Aurora, CO, USA;1. American College of Medical Genetics and Genomics, Bethesda, MD, USA;2. Johns Hopkins School of Medicine, McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University, Baltimore, MD, USA;3. Michigan Public Health Institute, Okemos, MI, USA;4. Washington State Department of Health, Kent, WA, USA;5. Valley View Family Practice, Rushville, NY, USA;6. University of Colorado School of Medicine, Aurora, CO, USA |
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| Abstract: | PurposeTo outline structures for regional genetic services support centers that improve access to clinical genetic services.MethodsA 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.ResultsAnalysis 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.ConclusionGiven 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. |
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