American Academy of Pediatrics Committee on Genetics. Pediatrics. 1996;98:473-501.
Covers broad policy issues in newborn genetic testing. Contains clinical and genetic information for disorders considered in this unit. Older information on genetic diseases screened in each state.
List of genetic disorders the March of Dimes believes every U.S. state should screen for in their newborn screening programs (as of 2000).
A committee at the University of Central Lancashire, Centre for Professional Ethics that examines ethical issues in genetic screening in Europe. They have produced several interesting papers that outline current views and concerns in the European community on genetic screening. These papers were available online, but have recently been removed. Contact the group for further information.
Public participation in medical policy-making and the status of consumer autonomy: the example of newborn screening programs in the United States.
Hiller E., Landenburger G., Natowitz R. American Journal of Public Health. 1997;87:1280-128.
Table of state-by-state policy for access to newborn screening information, parental consent and parental right to screening refusal in the United States as of April 1995.
The National Screening Committee. London: Health Departments of the United Kingdom 1998.
Contains an inventory of newborn and broad population screening programs currently in effect in the United Kingdom. Outlines policy guidelines already in effect or being considered by the Screening Committee.
Title V of the Social Security Act authorized the creation of the Maternal and Child Health Services programs and financially supports newborn screening tests for all infants born in each U.S. state. This table includes some states not reported in the "U.S. National Screening Status Report". Tests are reported by states in their Title V Block Grant FY 1998 Annual Report and FY 2000 Application.