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Background <p>The screening of newborns for severe congenital diseases has been a&#xa0;success story since the 1960s. With the upsurge of genomic sequencing technologies, the question arises: Should <i>genomic</i> 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&#xa0;standard public health procedure in neonatal care?</p> Method <p>We investigated genomic newborn screening from a&#xa0;child-centered public health ethics perspective. We conducted a&#xa0;systematic literature search and identified 15&#xa0;general ethical frameworks for public health. Based upon text analysis, we extracted all relevant normative elements and grouped them inductively. Furthermore, we developed a&#xa0;detailed substantial concept of the child’s best interest to serve as central and systematic reference point for a&#xa0;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: <i>health, family welfare</i> and <i>autonomy</i>.</p> Results <p>Having excluded all norms not applicable to gNBS we illustrate the meaning and most important implications of each of the remaining 54&#xa0;general public health ethics norms from a&#xa0;child-centered perspective. The article thereby offers a&#xa0;framework for an assessment of gNBS from a&#xa0;child-centered public health ethics perspective. It also provides substantive and methodological guidance for further systematic ethical inquiry into gNBS.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年9月4日

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  • Martin Jungkunz,
  • Christoph Schickhardt

摘要

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.