Mission & History
Mission Statement
The Heartland Genetics and Newborn Screening Collaborative is focused on ensuring the best possible outcome for individuals with heritable disorders and optimizing the health of the population throughout the life cycle by improving understanding and awareness of genetics; expanding access to health care; and translating new findings to improve the quality of care within an eight-state region.
History
In 2004 the federal government awarded grants to establish seven Genetic Service and Newborn Screening Regional Collaborative Groups and a National Coordinating Center (NCC) to develop regional approaches to address the maldistribution of genetic resources. Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, and South Dakota, the eight states in middle America, are included in the Heartland Region. See the NCC web site for more information and links to the other regional collaboratives. The Heartland Genetics and Newborn Screening Collaborative was formed at that time, under the leadership of Dr. John Mulvihill, Lori Williamson, and the Heartland Steering Committee. The initial phase of funding lasted three years, and is currently continuing under a five year competitive renewal. See Funding for more information.
Purpose
The major purpose of the Heartland Genetics and Newborn Screening Collaborative is to improve and expand the capacity of state public health genomics programs and clinical genetics service programs to provide quality screening, testing, diagnostic, counseling, treatment, and management services to those having or at risk for heritable disorders in a way that is culturally sensitive, collaborative, and responsive to our states’ and regional needs.
We work to improve: access to expanded newborn screening; professional and public genetics literacy; equitable access to genetics evaluation; counseling and testing services; and cooperation between neighboring states within the region. We facilitate and promote collaboration, assessment, planning, program development and evaluation, education, research and public policy activities related to these issues.
Among the seven US regions, we are the third largest in land area with the second lowest population. Though varying from state to state, the average population density in the region is 39 persons per square mile, as compared to the US average of 80 persons per square mile. The Heartland population of 21 million persons in 556,000 square miles has only 12 genetics centers to provide clinical services for the entire region.
The medical genetics clinical staff ranges from one geneticist in North Dakota to nine medical geneticists in Missouri. Similarly, variability exists among the public health genetics resources and in the nature of the relationships between the clinical centers and their respective public health genomics programs. However, the disparity among newborn screening tests is decreasing. As of July 1, 2008, Kansas, Arkansas, Oklahoma and Nebraska have expanded mandatory screening to the core recommended panel.
Please see our Regional Plan for more information on goals and plans for the region. Please see our Narrative for a complete description of our plans for 2008-2009, and a progress report on the last two years.