Policy Making in Newborn Screening Needs a Structured and Transparent Approach.

ABSTRACT:

Purpose

Newborn bloodspot screening (NBS) programs have expanded significantly in the past years and are expected to expand further with the emergence of genetic technologies. Historically, NBS expansion has often occurred following ad hoc consideration of conditions, instead of a structured and transparent approach. In this review, we explore issues pertinent to NBS policy making, through the lens of the policy cycle: (a) agenda setting, (b) policy advice, (c) policy decision, (d) implementation, and (e) evaluation.

Methods

A literature search was conducted to gather information on the elements specific to NBS and its policy making process.

Results

The review highlighted two approaches to nominate a condition: a structured approach through horizon scanning; an

SUBMITTER: Jansen ME 

PROVIDER: S-EPMC5359248 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature