Last modified on Tuesday, September 16, 2003

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This study is being conducted by researchers from UNC Frank Porter Graham Child Development Institute and Clinicians from UNC Department of Pediatrics, Division of Genetics and Metabolism. It is funded by the Ethical, Legal, and Social Implications (ELSI) Program of the National Human Genome Research Institute/National Institutes of Health (NIH).

The Family Interpretations of Genetic Knowledge Project is located at the Frank Porter Graham Child Development Institute, one of the nation's oldest multidisciplinary centers for the study of young children and their families. Research and education activities of the Center focus on child development  and health, especially factors that may put children at risk for developmental problems.

The Family Interpretations of Genetic Knowledge Project is open to new families referred to the UNC Genetics Clinic for evaluation and counseling about a (non-metabolic) genetic disorder.  The main clinic is located at UNC Hospitals in Chapel Hill with satellite sites in Raleigh, Fayetteville, Lumberton, and Greensboro, North Carolina.

A genetic consultation involves evaluation of an individual or family to:

• confirm, diagnose, or rule out a genetic condition;
• advise and recommend appropriate medical management;
• communicate and interpret information about the disorder and options for testing;
• identify other relatives at risk for the disorder;
• provide support to families;
• refer families to appropriate community services.