Published online September 1, 2007
PEDIATRICS Vol. 120 Supplement September 2007, pp. S87-S100 (doi:10.1542/peds.2007-1010H)
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SUPPLEMENT ARTICLE


Summary of Workgroup Meeting on Use of Family History Information in Pediatric Primary Care and Public Health

Ridgely Fisk Green, MMSc, PhD

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia

A workgroup meeting on the use of family history information in pediatric primary care and public health sponsored by the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention was held February 24 to 25, 2006. The workgroup participants met to discuss how to improve the use of family history information in pediatric settings. Topics addressed at the meeting included current practices, needs, and barriers for use of family history information in pediatric primary care and public health. Other considerations included how available family history tools might be applicable to pediatric settings and which areas require additional research. Specific model conditions were presented that illustrated issues involved in the use of family history information in pediatric settings, including cystic fibrosis, fragile X syndrome, polycystic kidney disease, hyperlipidemia and coronary artery disease, and birth defects. Ethical, economic, and technologic concerns involved in integration of family history information into pediatric settings were discussed also.

Key Words: family history • public health • pediatric primary care • fragile X • cystic fibrosis • polycystic kidney disease • hyperlipidemias • birth defects

Abbreviations: CDC—Centers for Disease Control and Prevention • ACCE—analytic and clinical validity, clinical utility, and ethical, legal and social issues • CF—cystic fibrosis • PKD—polycystic kidney disease • FXS—fragile X syndrome • MR—mental retardation • POF—premature ovarian failure • FXTAS—fragile X–related tremor/ataxia syndrome • LDL—low-density lipoprotein • AAP—American Academy of Pediatrics • HL7—Health Level 7 • CDA—Clinical Document Architecture • CCR—Continuity of Care Record

Accepted May 16, 2007.


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