APHL collaborates with state newborn screening programs and legal counsels to monitor legal and legislative issues affecting state newborn screening programs. It conducts these activities through the Legal and Legislative Issues in Newborn Screening (LLINBS) Workgroup. APHL also disseminates related policy resources.
State Newborn Screening Bills
APHL monitors NBS legislation, such as additions to state NBS panels and fee increases, across the US. APHL's
State Legislation Tracking site, allows users to click on highlighted states to view proposed and enacted legislation. Bill information is automatically updated as it becomes available. This tool is restricted to APHL staff, NBS program personnel, state laboratory directors and federal partners. To request access, please contact Funke Akinsola, senior specialist, Newborn Screening & Genetics.
Genetic Privacy Educational Sessions
The Next Frontier of Genetics and Privacy: NBS at the Intersection
Newborn Screening Genetic Privacy Concerns Persist, Despite the Common Rule
Position Statements on Newborn Screening
Timely, efficient and integrated short term follow-up programs are a critical and necessary component of a successful newborn screening system.
Newborn Screening Contingency Planning: Sunset December 2022
APHL recommends that all state newborn screening systems maintain and update a Continuity of Operations Plan (COOP) that ensures minimal or no interruption of services.
Newborn Screening Residual Dried Blood Spot Specimens: Sunset August 2022
APHL supports the position that public health newborn screening programs should be able to store and use residual dried blood spot specimens and test results for program activities without requiring parental consent.
Parental Consent for Newborn Screening:
Sunset July 2022
APHL supports the position that public health newborn screening should be mandated and should not require parental consent.
Quality Assurance and Quality Control in the Newborn Screening Laboratory: Sunset December 2020
Supports the effort to assure and sustain the highest quality of testing by public health newborn screening programs. As part of its support, APHL endorses the role of the CDC Newborn Screening Quality Assurance Program and urges expansion of its services for disorders screened by state NBS programs.