MSGRCC Projects Promote Access to Genetic Services

The Mountain States Genetics Regional Collaborative Center (MSGRCC), one of seven HRSA funded regional collaborative centers, includes these states: AZ, CO, MT, NM, NV, TX, UT, WY. A MSGRCC goal is to improve access to genetic services for individuals affected with heritable disorders. MSGRCC supports projects to engage professional and community partners. Two are described in this presentation. Access to newborn screening follow-up is affected by a lack of specialty providers to manage and treat children with rare conditions, especially across large geographic areas. MSGRCC developed clinical tools to enhance the quality of management and treatment for metabolic patients. Planning is underway to collect data on outcomes and to use these tools for meaningful health information exchange between state newborn screening programs, specialty providers, and the medical home. To improve access to diverse populations, MSGRCC focused on first nation tribes. The Navajo Nation has a moratorium on genetic studies due to perceived errors and abuses in the introduction of this technology to the community. MSGRCC implemented a mechanism to promote understanding of genetics and newborn screening among tribal members, and to foster an understanding of tribal views among genetics and public health providers and community educators. MSGRCC hosted the first Community Conversation on Genetics with the Navajo People at Diné College in Shiprock, New Mexico. Future community conversations with the Navajo and other first nation tribes are planned to take advantage of the momentum gained to meet the goal of improved access, and through access, social justice.