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ArticleJournal of bioethical inquiry2026

Moral Attitudes on Somatic Gene Editing for Inherited Cardiomyopathy: A Qualitative Interview Study with Key Stakeholders in the Netherlands.

Jannieke N Simons, Phaedra Locquet, Pascal Borry, Johannes J M van Delden, Rieke van der Graaf

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Article in Journal of bioethical inquiry, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

5 authors.

Jannieke N SimonsDepartment of Bioethics and Health Humanities, Julius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, Heidelberg 100, Utrecht, 3584, CX, The Netherlands. j.n.simons-6@umcutrecht.nl.
Phaedra LocquetCentre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 7, 3000, Louvain, Belgium.
Pascal BorryCentre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 7, 3000, Louvain, Belgium.
Johannes J M van DeldenDepartment of Bioethics and Health Humanities, Julius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, Heidelberg 100, Utrecht, 3584, CX, The Netherlands.
Rieke van der GraafDepartment of Bioethics and Health Humanities, Julius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, Heidelberg 100, Utrecht, 3584, CX, The Netherlands.

Funding

EU HORIZON EUROPE 101080204ZonMw 10250022110004
6 · The paper itself

Abstract

This qualitative study aims to understand the moral attitudes of key stakeholders toward the development of somatic gene editing for inherited cardiomyopathy. Patients are waiting on effective treatment for inherited cardiomyopathies, including those caused by PLN and LMNA mutations. Somatic gene editing, particularly prime and base editing, is being explored as a potential therapeutic strategy. Development of these technologies requires insight into the perspectives of stakeholders directly affected by or involved in their translation. Semi-structured interviews were conducted with eighteen stakeholders in The Netherlands, including PLN and LMNA-mutation carriers, clinicians, laboratory researchers, and regulatory officers. Interview transcripts were thematically analysed to foster collaborative development of higher-order themes. Three central themes were identified. First, participants emphasized the importance of "the right treatment for the right person at the right time," reflecting a mixture of cautious pragmatism and hopeful anticipation of meeting patients' unmet medical need. Second, respondents highlighted potential societal benefits, like cost savings and technological spill-over, as justifications for continued development of somatic gene editing for inherited cardiomyopathy. Third, stakeholders expressed notable trust, not only in the promise of somatic gene editing itself but also in the broader process of scientific and clinical advancement. Respondents recognized somatic gene editing as a potential root cause fix, but attitudes spanned from considering it the superior option to maintaining a more ambivalent stance. Importantly, expressed concerns were framed as challenges to overcome rather than grounds for rejection. This convergence of optimism and trust across stakeholder groups underscores a rare degree of alignment between patients, professionals, and regulators; an alignment that demands careful stewardship if enthusiasm is to translate into responsible development and implementation of somatic gene editing for inherited cardiomyopathy.

Indexed as

CardiomyopathyEthicsGene therapyLMNAPLNQualitative research

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.