State-to-State Variations in Newborn Screening Policies
Jeffrey J. Stoddard, MD;
Philip M. Farrell, MD, PhD
Arch Pediatr Adolesc Med. 1997;151(6):561-564.
Abstract
| |
Background
Population-based newborn screening for genetic and metabolic disorders is standard practice in all states in the United States. Policies governing newborn screening are determined at the state level; however, and thus, a great degree of variability exists between states regarding many facets of such screening.
Objective
To gather information relating to the processes, content, and outcomes of policy making affecting newborn screening programs across the United States.
Methods
We surveyed the directors of newborn screening programs for each of the 50 states using a postal questionnaire. The questionnaire solicited information about the specific tests incorporated in each state's panel of screening tests and information pertaining to the policy-making processes by which decisions are reached regarding this testing.
Results
Substantial variation exists across states regarding both the processes of policy formulation and the outcomes of decisions made about newborn screening. All states currently screen for phenylketonuria and congenital hypothyroidism. Extensive variation exists across states in testing for other disorders. The processes by which state policy makers arrive at decisions in this area are extremely diverse. Almost three fourths of the states have standing expert advisory bodies who issue recommendations regarding screening program modifications, but the authority granted to these panels varies substantially. Some regional cooperation in this area exists.
Conclusions
Further development of regional cooperation could offer some states greater efficiency in both laboratory testing and screening policy formulation. From the standpoint of an individual state, Wisconsin's approach to policy development in this area is described as a model worthy of consideration.
Arch Pediatr Adolesc Med. 1997;151:561-564
Author Affiliations
From the University of Wisconsin Medical School, Madison.
 CiteULike  Connotea  Del.icio.us  Digg  Reddit  Technorati  Twitter
What's this?
THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES
|
Practices and perceptions of long-term follow-up among state newborn screening programs.
Hoff and Hoyt
Pediatrics 2006;117:1922-1929.
ABSTRACT
| FULL TEXT
Does Familiarity Breed Acceptance? The Influence of Policy on Physicians' Attitudes Toward Newborn Screening Programs
Koopmans and Ross
Pediatrics 2006;117:1477-1485.
ABSTRACT
| FULL TEXT
Status of Newborn Screening Programs in the United States
Therrell et al.
Pediatrics 2006;117:S212-S252.
ABSTRACT
| FULL TEXT
Financing State Newborn Screening Programs: Sources and Uses of Funds
Johnson et al.
Pediatrics 2006;117:S270-S279.
ABSTRACT
| FULL TEXT
Newborn Screening by Tandem Mass Spectrometry
Enns
NeoReviews 2001;2:e201-207.
FULL TEXT
Ethical Issues With Genetic Testing in Pediatrics
Committee on Bioethics
Pediatrics 2001;107:1451-1455.
ABSTRACT
| FULL TEXT
Genetic Counseling and Risk Communication Services of Newborn Screening Programs
Farrell et al.
Arch Pediatr Adolesc Med 2001;155:120-126.
ABSTRACT
| FULL TEXT
Serving the Family From Birth to the Medical Home. Newborn Screening: A Blueprint for the Future - A Call for a National Agenda on State Newborn Screening Programs
Pediatrics 2000;106:389-422.
FULL TEXT
The Magnitude and Challenge of False-Positive Newborn Screening Test Results
Kwon and Farrell
Arch Pediatr Adolesc Med 2000;154:714-718.
ABSTRACT
| FULL TEXT
|
