Additional Resources

Cost Considerations

Abstracts from the first annual conference on genetics and public health

Washington D.C. Centers for Disease Control Office of Genetics and Disease Prevention. 1998.

Reference for the cost of the Newborn Screening Program for the state of California. Contains detailed information about this state's comprehensive Genetic Disease Branch, a legislative unit which regulates genetic services.

Molecular genetic testing in pediatric practice: a subject review

American Academy of Pediatrics Committee on Genetics. Pediatrics. 2000;106:1494-1497.

Policy statement designed for the pediatrician. Provides background information on molecular genetic tests, describes specific testing modalities, and discusses some of the benefits and risks of certain techniques specific to the pediatric population. Good for advanced students interested in different testing methodologies.

Baylor University Medical Center Supplemental Newborn Screening Program

Information for parents interested in having their newborn tested for disorders not offered in their home state's screening program. Includes cost, tests offered and specimen collecting and processing information.

A laypersons guide to tandem mass spectrometry and newborn screening

Chace D. Tyler For Life Foundation, Inc. Web site. 2000.

An excellent article written by the Director of Neo Gen Screening, Dr Donald Chace, on the emerging technology of Tandem Mass Spectrometry. Includes information on what it is, how it works and using the technique for newborn screening.

Newborn screening for cystic fibrosis

Farrell P., Mischler E. Advances in Pediatrics. 1992;39:35-70.

This 1992 article discusses what was known at that time about the genetics and diagnosis of CF. A unique feature of this article is its analysis of the cost effectiveness of the CF newborn screening program in Wisconsin. Information is provided on estimated laboratory and personnel costs for screening programs and follow-up with positive test results, and a comparison of medical costs for children with CF who were identified as newborns and those who were identified later based on symptoms. Although results are somewhat ambiguous, tables provide useful cost information for screening and patient care over 5 years of treatment. College reading level.

Complete insurance coverage in newborn screening: the case of PKU dietary coverage

Lance W. Southeastern Regional Genetics Group Winter Newsletter. 1996.

An article discussing the possibility of a legal requirement for insurance companies to cover all medically prescribed components for a treatment plan including special food items necessary for patients with PKU. Discusses the high cost of these specially prepared foods. Written by a professor of pediatrics at the University of Alabama, Civitan International Research Center.

State Children's Health Insurance Program (SCHIP)

American Academy of Pediatics Web site. 2001.

The American Academy of Pediatrics keeps up-to date information about the SCHIP program with suggested improvements.

Newborn screening for congenital disorders

U.S. Congress Office of Technology Assessment. In: Healthy Children: Investing in the Future. Washington DC: US Congress Office of Technology Assessment. U.S. Government Printing Office; 1988:103-116. Publication No. OTA-H-345.

Report designed for politicians considering newborn screening policy. Appendix I (data and methods used in OTA's cost-effectiveness analysis of strategies for newborn screening) provides useful cost information from 1986 for specimen collection, laboratory testing and followup for PKU, hypothyroidism, maple syrup urine disease and galactosemia. Assesses treatment costs for these four conditions and estimates savings enabled by newborn screening programs.