The Mountain States Regional Genetics Network (MSRGN) is one of seven regional networks covering the nation. The MSRGN covers an eight state region that includes Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah and Wyoming. MSRGN is federally funded through Grant UH7MC30776-01-00 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Genetic Services Branch. The Texas Health Institute (THI) administers the MSRGN, which began a three-year cycle on June 1, 2017. Previously, the MSRGN was funded as the Mountain States Genetics Regional Collaborative (MSGRC) from June 2012 to May 2017. The MSRGN ensures that individuals with heritable disorders and their families have access to quality care and appropriate genetic expertise through facilitating a network of genetics clinics, primary care practices, consumer advocates, and state health department resources. The MSRGN facilitates regional networking, encourages involvement of diverse populations, and supports activities that inform quality improvement and access for underserved populations in the clinical genetics health care delivery systems. These collaborative efforts bring together clinicians, public health professionals, and affected families to fulfill the MSGRN mission.
The MSRGN prides itself as being an open forum allowing all members – consumer advocates and genetic professionals – the opportunity to participate as equals in addressing relevant genetic services and issues.
The eight states in our region have a combined area over one million square miles,1 constituting a land area of almost one-third of the entire United States and extending from Canada to Mexico. The mountain states region has a population of more than 49 million people.2 Overall, there are 491 counties within the Mountain states, 199 of which meet frontier criteria (fewer than 7 persons per square mile.3
Arizona, Colorado, Nevada, New Mexico, and Texas have larger concentrations of Hispanic/Latino populations than the US average,4 and the mountain states region is home to a higher percentage of Native Americans than the US as a whole. In four of our states, a language other than English is spoken at home in one quarter to one third of all households.5 As a result, the mountain states region will be challenged to deliver genetic services to unique populations of Americans, many of whom are culturally and linguistically distinct from the majority population.
While the eight states within the Mountain States region are diverse in terms of population composition, each of these states is among the top twenty fastest growing states in the US. Nevada, Arizona, Texas, and Utah are among the ten states with the largest projected net population increases from 2000 to 2030. Texas’s projected net population increase is over twelve million, Arizona over five million, and Nevada over two million. Net population increases projected between 2000 and 2030 for the remaining mountain states include Colorado and Utah with over 1 million each, Montana with over 100,000, New Mexico with 280,000, and Wyoming with 29,000. Thus, based on rapid population growth alone, the Mountain States region will contribute an increasing proportion of individuals with genetic disorders in the US.6
More than 700,000 births occur annually within the Mountain States region, and it is estimated that three to five percent of these births are complicated by a genetic or congenital condition. Consequently, as many as 21,000 infants and their families in the Mountain States region will require genetic services each year. In 2014, all states in the mountain state region except Colorado had birth rates higher than the US birth rate of 12.5 per 1,000.7 In a geographically large region with centralized specialty services and a dispersed population, delivery of specialized services to the population constitutes a challenge. The resources to serve these families are limited within each of our eight states. Coordination and collaboration among all people concerned with genetics services, lay and professional, help to maximize the use of relatively scarce resources.
1 U.S. Census Bureau. (2012). Land and water area of states and other entities: 2008. Retrieved from http://www.census.gov/prod/2011pubs/12statab/geo.pdf
2 U.S. Census Bureau. (2015). American Fact Finder. https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_15_1YR_B01003&prodType=table.
3 County Population Density: Population density of Counties within Mountain states were provided in the 2010 population data from the census website. The formula used in calculating population density is, County Population Density = Population of County / Area in square miles of Land; Frontier Counties: For this project, the definition of frontier counties was followed strictly and it is any county with population density of < 7 persons per square mile are derived in the formula above.
4 U.S. Census Bureau. (2015). American Fact Finder. https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_15_1YR_B03001&prodType=table.
5 U.S. Census Bureau. (2010-2014). State and county quick facts. Retrieved from http://quickfacts.census.gov/qfd/index.html.
6 United States Census Bureau. Table 1. Ranking of Census 2000 and Projected 2030 State Population and Change. Retrieved from https://www.census.gov/population/projections/data/state/projectionsagesex.html.
7 Kaiser Family Foundation’s State Health Facts. (2014). Total Number of Births. Data Source: The Centers for Disease Control and Prevention (CDC), National Vital Statistics Reports (NVSR), Vol. 64, No. 12: Births: Final Data for 2014, December 23, 2015.