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MCH Genetic Services

The MCH Genetic Services Programs assist States and communities to translate medical genetics and scientific knowledge and technology into services at the community level. The programs facilitate health promotion through early identification of heritable conditions; the development of comprehensive, culturally competent and family-centered genetic services; and understanding how genetics affect health. These Genetic Services include a broad range of clinical and public health activities, such as individual and community assessments for genetic risk factors; genetic screening, counseling for inherited conditions, and support for state public health infrastructure. Genetic services measure risk, susceptibility and prevalence of gene-related conditions that result from specific environmental exposures and help people with rare genetic disorders manage their health. MCH Genetic programs promote a close partnership among consumers of genetic services and public health programs, non-governmental organizations, health care professionals, the scientific genetics community and the general public. Special emphasis is placed on improving state-based MCH programs through the integration of genetic services into a comprehensive family-centered, culturally-competent, community-based system of care for individuals with special health care needs and their families. 

Activities

These genetic service programs encourage the integration of various types of Federal, State, and community-funded newborn screening and genetics services into systems of care that are responsive to the individual needs of the people being served. MCH Genetic Services projects are implemented in the following program areas:

• Community genetics services, for the delivery of genetic services within the National Hemophilia Program, Thalassemia, and Sickle Cell Disease programs
  
  
• Genetic Education and training for health professionals, such as the Genetics in Primary care Training Institute
  
  
• Public health and service infrastructure for genetic and newborn screening service programs, such as the Regional Genetic and Newborn Screening Service Collaboratives, Newborn Screening Technical Assistance Center and the Regional Genetic Collaboratives.
  
  
• Consumer initiatives in genetic education, such as the Clearinghouse for Newborn Screening Information

Highlights

Until 2005, there was little uniformity between states in the panels of conditions for which infants were screened. Now, newborn screening across the States is largely uniform and is coordinated with input from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. These efforts have helped unify community-based service infrastructure for the delivery of genetic services for over 30 years. For instance, the National Hemophilia Program has helped families and individuals with hemophilia (and other bleeding disorders) obtain comprehensive care and treatment for individuals with these conditions. by assisting with integration of genetic services into community systems of care. The Sickle Cell Disease and the Thalassemia Programs are both designed to enhance screening, diagnosis, counseling, specialized medical management, education, prevention, treatment; and transition services. The Hemoglobinopathy Program also trains health professionals and providers in the care of individuals with blood disorders; and partners with family community based organizations, adult and pediatric hematologists, State and county health offices, and other regional experts in blood disorders. 

Resources

• Regional Genetic and Newborn Screening Service Collaboratives National Coordinating Center serves as the bridge between the regional collaboratives and MCHB; consumer and professional organizations; researchers; public health organizations; and policy makers.
  
  
• The Newborn Screening Clearinghouse is a central repository of current educational and family support and services information, materials, resources, research, and data on newborn screening.
  
  
• National Consumer Center for Genetics Resources and Services provides relevant information to help individuals understand the contribution of genetics on their health, connects individuals and families to appropriate services, improves the accessibility of existing tools, and increases the dissemination of resources to the public.
  
  
• Sickle Cell Disease Newborn Screening Program National Coordinating and Evaluation Center supports grantees in their activities and efforts related to outreach, education and genetic counseling for health care providers, affected individuals across the life span, their families, and the general population.
  
  
• National Coordinating Center for Sickle Cell Disease Treatment Demonstration Program provides technical assistance; collects and analyzes data; and implements activities required by the program’s authorizing legislation to grantee networks.