Newborn Genetic and Metabolic Disease Screening
THIS DOCUMENT IS MAINTAINED ON THE NCSL WEBSITE FOR REFERENCE PURPOSES. THE INFORMATION IS CURRENT AS OF THE DATE BELOW, AND THIS DOCUMENT IS NOT BEING UPDATED.
November 2007
State public health programs screen an estimated 4.1 million infants annually for genetic and metabolic disorders. Early detection of these abnormalities can prevent severe disability, mental retardation or even death and may also save states and families money by avoiding financially burdensome medical costs and state institutional services. Comprehensive state newborn screening programs involve more than the initial screening. Diagnosis, follow-up, treatment and evaluation are also vital components to ensure that children with potentially life threatening conditions receive necessary care.
All state legislatures play a key role in the newborn screening system as the bodies responsible for appropriating funds or authorizing fees to make newborn screening possible. The extent of legislative involvement in the newborn screening system varies. In some cases, the panel of disorders screened for is set forth in state statutes while in other instances the state health department or other entity has the authority to alter the panel. State statutes or regulations also may address payment for newborn screening services, the provision of medical foods for treatment of a disorder, privacy and confidentiality issues, parent education about newborn screening, contracting services, laboratory standards and the storage, use and disposal of blood spots.
Whether a newborn is screened for a particular condition depends on his or her birthplace because newborn screening lists of conditions (referred to as a panels) differ state by state. Factors such as prevalence and severity of a condition, availability and effectiveness of treatment, and cost may help to determine whether a state screens for a particular disorder. Recent advances in technology have enabled some states to add a substantial number of conditions to the newborn screening panel in a relatively short timeframe.
Through tandem mass spectrometry, public health laboratories can now quickly analyze a blood sample for dozens of conditions. These developments prompted the Health Resources and Services Administration (HRSA) to request a report on newborn screening that would include a recommendation for a uniform panel of conditions. The report Newborn Screening: Toward a Uniform Panel and System completed by the American College of Medical Genetics was approved by the U.S. Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. The committee also has developed a process for applicants to request the addition of a condition to the recommended panel.
Citations and links to newborn screening program statutes in the states and the District of Columbia are below. Links to state legislative websites have been added, but please check the date of the on-line statutes to make sure that you are accessing the most current information. The information provided below does not necessarily include sections pertaining to program funding or payment for or coverage of services and treatment. A list of disorders screened for by state is available on-line through the National Newborn Screening and Genetics Resource Center.
NOTE: NCSL does not have a position with respect to newborn screening or the ACMG report. The above links to outside organizations are provided for informational purposes only.
Alabama Ala. Code § 22-20-3
Alaska Alaska Stat. § 18-15-200, 210
Arizona Ariz. Rev. Stat. § 36-694
Arkansas Ark. Code Ann. § 20-15-301 to 304
California Cal. Health and Safety Code § 124975 to 125001
Colorado Colo. Rev. Stat. § 25-4-1001 to 1006
Connecticut Conn. Gen. Stat. Ann. § 19a-55
Delaware Del. Code § 16.2.201 to 206
District of Columbia D.C. Code Ann. § 7-831 to 840
Florida Fla. Stat. Ann. 29 § 383.14
Georgia Ga. Code § 31-12-5 to 7
Hawaii Hawaii Rev. Stat. § 321-291
Idaho Idaho Code § 39-909 to 912
Illinois 410 ILCS § 240/.01 to .03
Indiana Ind. Code § 16-41-7
Iowa Iowa Code § 136A.1 to 7
Kansas Kan. Stat. Ann. § 65-180 to 183
Kentucky Ky. Rev. Stat. § 214.155
Louisiana La. Rev. Stat. Ann. 40 § 1299
Maine Me. Rev. Stat. Ann. tit. 22 § 1531 to 1533
Maryland Md. Health Code Ann. § 13-101 to 110
Massachusetts Mass. Gen. Laws 111 § 3, 4E, 5, 6, 24A, 110A
Michigan Mich. Comp. Laws § 333.5431
Minnesota Minn. Stat. § 144.125 to 128
Mississippi Miss. Code Ann. § 41-21-201 to 205; § 41-24-1 to 5
Missouri Mo. Rev. Stat. § 191.331, 332
Montana Mont. Code Ann. § 50-19-201 to 211
Nebraska Neb. Rev. Stat. § 71-519 to 24
Nevada Nev. Rv. Rev. Stat. § 442.008
New Hampshire N.H. Rev. Stat. Ann. § 132:10-a to d
New Jersey N.J. Stat. Ann. § 26:2-510 and 511
New Mexico N.M. Stat. Ann. § 24-1-6
New York N.Y. Public Health Law § 2500-a
North Carolina N.C. Gen. Stat. § 130A-125
North Dakota N.D. Cent. Code § 23-01-03.1; 25-17-00.1 to .5
Ohio Ohio Rev. Code Ann. § 3701.50.1 to .9
Oklahoma Okla. Stat. § 63-1-533, 534
Oregon Or. Rev. Stat. § 433.285 to .295, § 192.531 to .549
Pennsylvania Pa. Cons. Stat. tit. 35 § 621-625
Rhode Island R.I. Gen. Laws § 23-13-14
South Carolina S.C. Code Ann. § 44-37-30
South Dakota S.D. Codified Laws Ann. § 34-24-17 to 25
Tennessee Tenn. Code Ann. § 68-5-401 to 506
Texas Tex. Code Ann. Health and Safety § 33.001 to .038
Utah Utah Code Ann. § 26-10-6
Vermont 18 V.S.A. § 115
Virginia Va. Code § 32.1-65-69
Washington Wash. Rev. Code § 70.83.020 to .050
West Virginia W.V. Code § 16-22-1 to 6
Wisconsin Wis. Stat. Ann. § 253.13
Wyoming Wyo. Stat. § 35-4-801 to 802
Sources: National Conference of State Legislatures, West Group, StateNet
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