Task Force Report Outlines National Agenda on Newborn Screening

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The definition of comprehensive newborn screening is changing rapidly, and state public health programs may not be keeping up, according to an American Academy of Pediatrics (AAP) Task Force on Newborn Screening report published as a supplement to the journal Pediatrics. AAP convened the task force with funding from and at the request of the Maternal and Child Health Bureau, Health Resources and Services Administration. The report discusses specific recommendations for program and policy development in the following four areas: 1) public health infrastructure, 2) professional and consumer involvement, 3) surveillance and research, and 4) economics of screening.

The report identifies the following key issues:

• The need for all state newborn screening systems to keep pace with new technology.
• The need for uniform screening systems across states. All states screen for selected disorders, but screening requirements vary. For example, only a few states screen for cystic fibrosis, toxoplasmosis, or HIV, and only about half conduct universal hearing screens.
• Ethical concerns surrounding residual blood samples. In most cases enough blood remains after testing to conduct repeat testing if necessary; this raises questions about the ethics of using the blood for other purposes, including research.
• Privacy and consent issues. Information for parents about screening varies. The report states that parents have the right to be informed that their children will be screened and the right to refuse screening.
• The need for public awareness. Parents must be informed about 1) benefits and potential risks of newborn screening tests and treatments, 2) policies for storage and use of specimens, and 3) the mechanism by which they will receive test results.

The report also states that federal and state public health agencies, in partnership with health professionals and consumers, should continue to

• Better define federal and state public health agencies' responsibilities;
• Develop and disseminate model state regulations (including disease and test-selection criteria) to guide the implementation of state newborn screening systems;
• Develop and evaluate innovative testing technologies;
• Design and apply minimum standards for newborn screening activities (e.g., sample collection, laboratory quality, sample storage, and information systems);
• Develop and disseminate model follow-up, diagnosis, and treatment guidelines and protocols for health professionals and other participants in the newborn screening system;
• Design and evaluate model systems of care that provide individuals of all ages with services that are consistent with national guidelines for children with special health care needs (i.e., family-centered, community-based, and coordinated systems of care).
• Design and evaluate tools and strategies that strive to effectively inform families and the general public about newborn screening; and
• Fund demonstration projects to evaluate technology, quality assurance, and health outcomes.

American Academy of Pediatrics. 2000, August 7. Newborn screening report addresses inconsistencies and controversies. Press release available at http://www.aap.org/default.htm.

Serving the family from birth to the medical home: Newborn screening: A blueprint for the future executive summary: Newborn Screening Task Force report. August 2000. Pediatrics 106 (Suppl. 2):386-388.

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MCH Alert. 2001. Arlington, VA: National Center for Education in Maternal and Child Health. http://www.ncemch.org/alert.