Regulatory landscape of providing information on newborn screening to parents across Europe.

ABSTRACT: Newborn screening (NBS) is an important part of public healthcare systems in many countries. The provision of information to parents about NBS is now recognised as an integral part of the screening process. Informing parents on all aspects of screening helps to achieve the benefits, promote trust and foster support for NBS. Therefore, policies and guidelines should exist to govern how the information about NBS is provided to parents, taking into account evidence-based best practices. The purpose of our survey was to explore whether any legally binding provisions, guidelines or recommendations existed pertaining to the provision of information about NBS to parents across Europe. Questions were designed to determine the regulatory process of when, by whom and how parents should be informed a

SUBMITTER: Frankova V 

PROVIDER: S-EPMC7853088 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature