Facing suffering honestly: On severity, utility, and the public good in reproductive genetic carrier screening

M’hamdi, Hafez Ismaili, van der Hout, Sanne, Clarke, Angus ORCID: https://orcid.org/0000-0002-1200-9286 and de Wert, Guido 2026. Facing suffering honestly: On severity, utility, and the public good in reproductive genetic carrier screening. European Journal of Human Genetics 10.1038/s41431-026-02123-9

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Abstract

Reproductive genetic carrier screening (RGCS) raises the question of which conditions should be included. Severity has long been the guiding criterion: conditions causing serious suffering, justify offering reproductive options. Some propose replacing severity with utility, defined as the usefulness of information for reproductive decision-making. Proponents of this approach claim that utility aligns more directly with RGCS’s aim of supporting informed choice while avoiding stigmatizing judgments about genetic conditions. This article challenges that proposal. First, utility depends on severity: contextual factors such as preimplantation genetic testing become relevant only once a condition is judged sufficiently severe. Second, while severity retains some clinical anchors such as prognosis, functional limitations, treatment burden, utility dissolves into subjective preferences, making it ill-suited for guiding population-level policy. Third, collective recognition of severity provides prospective parents with a moral frame of reference that eases the heavy responsibility of reproductive decisions. Fourth, avoiding severity judgments in the name of respect risks both invalidating the suffering of affected individuals and bypassing the democratic deliberation essential to public healthcare policy. We argue that value judgments in RGCS are inevitable and necessary. Severity, though imperfect, provides the shared normative anchor needed for publicly funded programs. Facing suffering honestly, acknowledging severity while respecting those who live with severe conditions, is the foundation of a compassionate and democratic RGCS policy.

Item Type:	Article
Date Type:	Published Online
Status:	In Press
Schools:	Schools > Medicine
Publisher:	Springer Nature [academic journals on nature.com]
ISSN:	1018-4813
Date of Acceptance:	15 April 2026
Last Modified:	11 May 2026 11:00
URI:	https://orca.cardiff.ac.uk/id/eprint/186915

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