The development of the North Dakota State Genetics Plan was a collaborative effort among: the University of North Dakota School of Medicine and Health Sciences, Department of Pediatrics, Division of Medical Genetics; the North Dakota Genetics Advisory Committee; the North Dakota State Department of Health; the North Dakota State Genetics Plan Committee; and a wide array of partners and stakeholders around the state. A two-year grant from the Heartland Regional Genetics and Newborn Screening Collaborative provided the impetus and funding needed to accomplish this strategic planning project.

The first two sections of the Plan consist of a description of the demographics of North Dakota , a history of the development of clinical genetic services in the state, a list of current clinical genetic and related collaborative services, and a list of the educational activities in the state regarding clinical genetics. Sections III and IV address the needs assessment process and a summary of the five recommendations based on the results of the needs assessment which are: assure and enhance the availability and accessibility of quality and comprehensive clinical genetic services for all North Dakotans; p romote early identification and treatment of individuals with birth defects, disabilities, heritable disorders and genetic susceptibilities throughout the life cycle; i ncrease public and professional awareness of genetics, including services and resources; expand and enhance partnerships to support clinical genetic service systems ; and p romote the development of public policy that protects health and privacy for individuals and families, while supporting advancements in genetic science and technology. A list of associated objectives and action items follow each of the five recommendations. Section V consists of a list of references, acknowledgement of the planning committee members, and the appendices.

This State Genetics Plan provides a blueprint for a plan of action to guide the future expansion of clinical genetic services in the state. This comprehensive document provides policy makers, genetic stakeholders, and consumers an overview of the history and current directions of clinical genetic services. The recommendations encompass the emerging field of "genomics", promote the integration of genetics within existing programs, emphasize the involvement of public health, and the incorporation of adult disorders. Certain elements of the Plan have been underway. Others will require action in the years to come and it is thus a work in progress. Comments and suggestions are always welcome as we strive to make this a living, working document.

 

 

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