Methodology and Limitations

State laws (statutes and regulations) related to newborn screening of all 50 states and the District of Columbia were accessed online and reviewed between July 2012 and December 2014 by two independent reviewers to determine the extent to which the retention and use of DBS and associated information were addressed. These state statutes and regulations were accessed online again in May 2015 to identify any laws that had been revised and updates made, as indicated, based on review of revised law by two independent reviewers. While most or all laws will be current as of May 11, 2015, users should note the potential that this toolkit might not include recent amendments to specific state law.

This review was limited to laws, and did not include policies or procedures adopted by state health departments to implement laws. Similarly, while this analysis seeks to capture what states are required or permitted by law to do, the analysis may not reflect current state practices.

In addition to state newborn screening laws, many other types of state laws, such as those that address medical records, medical waste, and genetic privacy, for example, may govern state practices related to the retention and/or use of DBS and information derived from them.  However, this review was limited to state laws related to newborn screening, and analysis of other laws enacted within a state that might address any of the core provisions or topics was beyond the scope of this research.