Ethics of genomic newborn screening—a child centered public health framework

Abstract

Background: The screening of newborns for severe congenital diseases has been a success story since the 1960s. With the upsurge of genomic sequencing technologies, the question arises: Should genomic Newborn Screening (gNBS) be introduced as general public health measure for all newborns? From an ethical perspective, this leads to the question: What are the relevant moral criteria and points to consider when analyzing and evaluating gNBS as a standard public health procedure in neonatal care? Method: We investigated genomic newborn screening from a child-centered public health ethics perspective. We conducted a systematic literature search and identified 15 general ethical frameworks for public health. Based upon text analysis, we extracted all relevant normative elements and grouped them inductively. Furthermore, we developed a detailed substantial concept of the child’s best interest to serve as central and systematic reference point for a child-centered ethical assessment of gNBS. Matching the peculiarities of gNBS with this concept of the child’s best interest, we identified three aspects that are particularly affected by gNBS: health, family welfare and autonomy. Results: Having excluded all norms not applicable to gNBS we illustrate the meaning and most important implications of each of the remaining 54 general public health ethics norms from a child-centered perspective. The article thereby offers a framework for an assessment of gNBS from a child-centered public health ethics perspective. It also provides substantive and methodological guidance for further systematic ethical inquiry into gNBS.