Published online May 1, 2006
PEDIATRICS Vol. 117 No. 5 May 2006, pp. S212-S252 (doi:10.1542/10.1542/peds.2005-2633C)
This Article
Right arrow Full Text
Right arrow Full Text (PDF)
Right arrow Submit a response
Right arrow Alert me when this article is cited
Right arrow Alert me when eLetters are posted
Right arrow Alert me if a correction is posted
Right arrow Citation Map
Services
Right arrow E-mail this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Add to My File Cabinet
Right arrow Download to citation manager
Right arrowRequest Permissions
Citing Articles
Right arrow Citing Articles via HighWire
Right arrow Citing Articles via CrossRef
Right arrow Citing Articles via Google Scholar
Google Scholar
Right arrow Articles by Therrell, B. L.
Right arrow Articles by Williams, D.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by Therrell, B. L.
Right arrow Articles by Williams, D.
Related Collections
Right arrow Premature & Newborn
Social Bookmarking
Add to CiteULike   Add to Connotea   Add to Del.icio.us   Add to Digg   Add to Facebook   Add to Reddit   Add to Technorati   Add to Twitter  
What's this?

SUPPLEMENT ARTICLE

Status of Newborn Screening Programs in the United States

Bradford L. Therrell, PhDa, Alissa Johnson, MAb and Donna Williams, BSa

a National Newborn Screening and Genetics Resource Center, Austin, Texas
b National Conference of State Legislatures, Washington, DC

BACKGROUND. Newborn screening programs have expanded over the years; currently, many programs screen for dozens of congenital conditions that, if not detected and treated early, could result in catastrophic health consequences, including death. Some programs, however, still require universal newborn screening for only a few conditions. Although all 51 US programs (all states and the District of Columbia) have statutory screening requirements and similarities exist in many parts of the different screening systems, the enabling statutes, rules, regulations, protocols, and financing strategies vary dramatically. Consequently, there is a significant lack of equity in newborn screening services across the country.

METHODS. We investigated program variations existing in and around January 2005 and provide baseline information with which future program comparisons can be made. We used program surveys, electronic searches of legislation, and individual input (validation) from program decision-makers to create a reservoir of program information.

RESULTS. Included is a compilation of pertinent newborn screening statutes, information from genetic privacy statutes that potentially affects newborn screening programs, and a review of state laws that affect specimen and information retention. In addition, program policies related to the use of residual newborn screening blood spots are reviewed, along with the developmental processes affecting program informational brochures, including the information contained and the strategies for brochure dissemination.

CONCLUSIONS. Building on a progressive and successful history, newborn screening continues as an example of an essential population genetic screening program. As the intricacies of screening systems have increased in complexity, so have the policy issues that shape program successes and failures. The summary information in this article provides a basis for national and individual program evaluation. Indeed, some of the information reported here has already been useful for program refinements reported elsewhere in this supplement.

Key Words: newborn screening • laws • education • public health • public policy

Abbreviations: PKU—phenylketonuria • HIPAA—Health Insurance Portability and Accountability Act of 1996 • NNSGRC—National Newborn Screening and Genetics Resource Center • CORN—Council of Regional Networks for Genetic Services • APHL—Association of Public Health Laboratories • CDC—Centers for Disease Control and Prevention

Accepted Dec 27, 2005.


Add to CiteULike CiteULike   Add to Connotea Connotea   Add to Del.icio.us Del.icio.us   Add to Digg Digg   Add to Facebook Facebook   Add to Reddit Reddit   Add to Technorati Technorati   Add to Twitter Twitter    What's this?


This article has been cited by other articles:


Home page
 PediatricsHome page
R. H. Clark, D. H. Chace, A. R. Spitzer, and for the Pediatrix Amino Acid Study Group
Effects of Two Different Doses of Amino Acid Supplementation on Growth and Blood Amino Acid Levels in Premature Neonates Admitted to the Neonatal Intensive Care Unit: A Randomized, Controlled Trial
Pediatrics, December 1, 2007; 120(6): 1286 - 1296.
[Abstract] [Full Text] [PDF]

Home page
 Policy Politics Nursing PracticeHome page
K. G. Balk
Recommended Newborn Screening Policy Change for the NICU Infant
Policy Politics Nursing Practice, August 1, 2007; 8(3): 210 - 219.
[Abstract] [PDF]