ArticleEuropean journal of human genetics : EJHG2025
Severity in the genomic age: the significance of lived experience to understandings of severity.
Article in European journal of human genetics : EJHG, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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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.
The trial behind it
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Who cites it
4 citing papers in PubMed.
- Navigating the use of preimplantation genetic testing: a retrospective analysis of 15 years of the Dutch National Indications Committee for PGT.European journal of human genetics : EJHG · 2026Article
- An exploration of the perspectives of Dutch adults experiencing a genetic condition on human germline gene editing.Journal of community genetics · 2025Article
- The stigma of seriousness: views of genome editing scientists and policy professionals on defining serious disease.Journal of community genetics · 2025Article
- Editorial: severity in a genomic age.European journal of human genetics : EJHG · 2025Article
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Authors and funding
1 author.
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Abstract
This article explores the significance of lived experience to understandings of severity in the genomic age. It draws upon data from structured interviews with 21 people living with monogenic conditions in England. The article argues that while lived experiences are subjective, participants consider the severity of disease by the impact a condition has on a person's quality of life and mental health; both of these interplays are influenced by social, economic, and environmental factors. The three factors and considerations to the impact of living with disease on mental health are generally absent from current frameworks designed to assess severity for clinical applications of genomic technologies such as preimplantation genetic testing (PGT). This article describes ways in which such factors impact the quality of life and the mental health of people living with genetic conditions. It also indicates what lived experiences, which illustrate the impact of these factors, have to offer policy-makers when they are assessing the concept of severity or seriousness of genetic conditions for applications of existing and potential genomic technologies in the genomic age.
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Registered trials
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