Epidemiology as a Guardian of Children's Health: Translating Birth Defects Research into Policy

Abstract

The intentional coupling of epidemiology with the practical implications of policy has been a much desired, but often elusive, goal. At times, information provided by sound epidemiologicalresearchhasgoneunnoticed;thevoicesofcelebrities, public opinion, or industries have held sway in health policy development. This lost influence of epidemiology can result in inaction, wasted resources and/or failure to develop effective health initiatives. It can even harm those whom public health was meant to protect. However, when solid epidemiological research has been provided to, understood, used and implemented by policy makers, the efforts of epidemiologists and policy makers can result in truly effective health initiatives. Examples abound of such successful epidemiologically based policy initiatives related to children’s health, in particular children with special health care needs like birth defects. Some of the most successful examples include folic acid dietary supplements during pregnancy for preventionofneuraltubedefects,newborntestingforphenylketonuriaanddietarymanagement,andrecommendationsfor the limitations on alcohol ingestion during pregnancy for the prevention of fetal alcohol syndrome. Despite epidemiological and medical advances in the causes and treatment of children with birth defects and despite an increase in health policy initiatives, additional work must be done to improve the health of the nation’s children with special health care needs like birth defects. A better understanding and increased knowledge of the epidemiology of children with birth defects is a high priority due to the maternal and child health indicators in Healthy People 2010 (1). It is also important for needs assessment, program planning and development, service delivery, and program evaluation for Medicaid and the State Children’s Health Insurance Program and other State Title V Maternal and Child Health Block Grant related activities for this population (2). This is particularly salient issue given the current climate of health care reform and the need to assure children with special health care needs like birth defects have health insurance coverage. The purpose of this commentary is to describe some past and current research and policy initiatives regarding children with birth defects. We also explain the role epidemiologists can play in translating birth defects research into policy.