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 Ethical, Legal, Social, and Policy Issues (ELSPI) Subcommittee. APHL also disseminates related policy resources.
Genetic Privacy and Other Related NBS Symposium Sessions
Model language for state regulations regarding NBS specimen and data access by law enforcement and related entities: A Roundtable Conversation
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.