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PEDIATRICS
Genetics

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Granted permission to use picture from: U.S. Department of Energy Genomics:GTL Program  http://doegenomes.org

HISTORY OF GENETIC SERVICES IN NORTH DAKOTA
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The first clinical genetic services available in North Dakota were a cytogenetics laboratory established at the University of North Dakota School of Medicine before 1978, and genetic counseling services at the Muscular Dystrophy Clinic at Fargo in 1977. In May, 1978, the Governor's Task Force in Service Delivery Systems to the Handicapped set provision of clinical genetic services in North Dakota as a priority. Their recommendations were to recruit a clinical geneticist, improve the cytogenetics laboratory, establish funding, and develop lay public and professional genetic educational programs.

In July, 1978, a clinical geneticist joined the clinical faculty at the University of North Dakota School of Medicine to establish the statewide clinical genetic service. The program was to provide clinical genetic services to all citizens of North Dakota and its catchment areas of Minnesota, South Dakota, and Montana; to improve the technical proficiency and capabilities of the cytogenetics laboratory; to establish a referral diagnostic laboratory network; to insure that no person within the service area would be denied clinical genetic services; to increase professional and lay public educational services; to increase the awareness of the role of genetics in the health delivery system; and to establish permanent funding for the clinical genetic services. After the preliminary organizational planning and the meetings with the Area Health Education Center (AHEC) steering committees, the first patients were seen in September, 1978. Instrumental to the establishment of the North Dakota Statewide Clinical Genetic Services was Robert Wentz, MD, the Director of the Division of Maternal and Child Health in the State Health Department at that time.

The initial clinics were held at the University of North Dakota School of Medicine, the United Hospital, Child Evaluation and Treatment Program (CETP), Fargo, Bismarck, Williston (1979-1987), Minot, and Anne Carlson School (1979-1996). By 1980, the following clinic sites were added: Dickinson (1980-1985) and Fort Totten . Subsequently, the following clinic sites were added: Dickinson Coordinated Ambulatory Rehabilitation Evaluation Services (CARES) [1981-1982], Williston CARES [1981-1988], Turtle Mountain (1981-2005 ), Fort Berthold (1983-1995), Fort Yates (1989-2005 ), and Grafton State School (1989-1996). Approximately 13,000 patients and families have received genetic counseling from 1979-2006, generating an average of 480 encounters per year.

Funding for the statewide clinical genetics program has been received from various sources: start up funds from Maternal and Child Health (1978-1980), March of Dimes (1979-1986), Special Projects of Regional and National Significance (SPRANS) Grant (1980-1984), private practice funds (1984-current), and Maternal and Child Health Federal Matching funds (1985-current).

Without the other members of the Division of Medical Genetics, the statewide clinical genetic services could not have been provided. The other members of the Division include an Administrative Secretary, Nurse Geneticist, and a Human Services Information Coordinator.

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Dept. of Pediatrics
UND School of Medicine & Health Sciences Room 5910
501 N. Columbia Rd.Stop 9037
Grand Forks, ND 58202-9037
Telephone: 701-777-4277
Fax: 701-777-3220
Email: jbrown@medicine.nodak.edu

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