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Definition of the problem <p>This article examines the ethical implications of genomic newborn screening (gNBS) from a&#xa0;hermeneutic perspective. Decisions on criteria for preventive actionability, as well as on the detailed analysis and disclosure of genetic information to parents or to those affected, largely depend on the meaning and significance of the genetic information in question. gNBS represents a&#xa0;new form of genetic communication in which also popular understandings of the special significance of the genome play a&#xa0;role.</p> Arguments <p>The concept of „temporal vulnerability“ (Janna Thompson) can highlight the challenges faced by children who cannot consent to the collection of their genomic data at birth. Based on two case studies that are far apart in terms of <i>actionability</i>—familial hypercholesterolemia and complete androgen insensitivity syndrome—the paper discusses how to find the ethically relevant reasons that play a&#xa0;role in deciding about early genetic diagnosis.</p> Conclusions <p>We advocate for a&#xa0;nuanced ethical framework that considers not only medical actionability but also the broader societal impacts of making genomic information available from birth.</p>

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Ethik der genetischen Kommunikation im Kontext des genomischen Neugeborenen-Screenings: Hermeneutische Überlegungen und zwei Fallbeispiele

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年8月26日

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  • Lena:Emil Kramheller,
  • Christoph Rehmann-Sutter

摘要

Definition of the problem

This article examines the ethical implications of genomic newborn screening (gNBS) from a hermeneutic perspective. Decisions on criteria for preventive actionability, as well as on the detailed analysis and disclosure of genetic information to parents or to those affected, largely depend on the meaning and significance of the genetic information in question. gNBS represents a new form of genetic communication in which also popular understandings of the special significance of the genome play a role.

Arguments

The concept of „temporal vulnerability“ (Janna Thompson) can highlight the challenges faced by children who cannot consent to the collection of their genomic data at birth. Based on two case studies that are far apart in terms of actionability—familial hypercholesterolemia and complete androgen insensitivity syndrome—the paper discusses how to find the ethically relevant reasons that play a role in deciding about early genetic diagnosis.

Conclusions

We advocate for a nuanced ethical framework that considers not only medical actionability but also the broader societal impacts of making genomic information available from birth.