Akademie für Ethik in der Medizin e.V. (@aem-online.bsky.social)

Jetzt neu in der AEM-Zeitschrift: Ein Text von Lena:Emil Kramheller und Christoph Rehmann-Sutter, zur "Ethik der genetischen Kommunikation im Kontext des genomischen Neugeborenen-Screenings". URL: dx.doi.org/10.1007/s004...

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Ethik der genetischen Kommunikation im Kontext des genomischen Neugeborenen-Screenings: Hermeneutische Überlegungen und zwei Fallbeispiele - Ethik in der Medizin 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. http://dx.doi.org/10.1007/s00481-025-00877-2