Journal article
Collection, use, and protection of population-based birth defects surveillance data in the United States
Birth defects research. A Clinical and molecular teratology, Vol.79(12), pp.811-814
12/01/2007
DOI: 10.1002/bdra.20420
PMID: 18064713
Abstract
Birth defects surveillance systems collect population-based birth defects data from multiple sources to track trends in prevalence, identify risk factors, refer affected families to services, and evaluate prevention efforts. Strong state and federal public health and legal mandates are in place to govern the collection and use of these data. Despite the prima facie appeal of "opt-in" and similar strategies to those who view data collection as a threat to privacy, the use of these strategies in lieu of population-based surveillance can severely limit the ability of public health agencies to accurately access the health status of a group within a defined geographical area. With the need for population-based data central to their mission, birth defects programs around the country take their data stewardship role seriously, recognizing both moral and legal obligations to protect the data by employing numerous safeguards. Birth defects surveillance systems are shaped by the needs of the community they are designed to serve, with the goal of preventing birth defects or alleviating the burdens associated with them.
Details
- Title: Subtitle
- Collection, use, and protection of population-based birth defects surveillance data in the United States
- Creators
- Cara T. Mai - National Center on Birth Defects and Developmental DisabilitiesDavid J. Law - Tennessee Dept Hlth, Off Policy Planning & Assessment, Nashville, TN USACraig A. Mason - University of MaineBradley D. McDowell - University of IowaRobert E. Meyer - Ctr Hlth Stat, N Carolina Div Publ Hlth, Raleigh, NC USADebra Musa - New York State Office for People With Developmental Disabilities
- Resource Type
- Journal article
- Publication Details
- Birth defects research. A Clinical and molecular teratology, Vol.79(12), pp.811-814
- Publisher
- Wiley
- DOI
- 10.1002/bdra.20420
- PMID
- 18064713
- ISSN
- 1542-0752
- eISSN
- 1542-0760
- Number of pages
- 4
- Language
- English
- Date published
- 12/01/2007
- Academic Unit
- Holden Comprehensive Cancer Center
- Record Identifier
- 9984368085002771
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