Journal article
The value of large-scale programmes in human genomics
- Abstract:
- Large national genomic programmes have been created in many countries, including France, England and Germany, to advance the realisation of the potential genomic medicine holds to significantly contribute to society by improving health, and driving science, innovation and the economy. To reach this ambition, these programmes collect, manage and analyse big genomic datasets. While there is much talk about the promises, and hence the importance of genomics, there is little in-depth analysis of the actual contribution or value—here understood as benefits—of genomics for society at large. To explore the issue of the value of large-scale genomic programmes for society, UK-FR-D+ GENE held an international workshop focusing on a variety of levels—societal, economic, clinical, scientific, and population-wide level—at which such benefits might be observed. First, the broader societal implications of large genome programmes and their impact for public trust were discussed. Second, the meaning of fair and just allocation of public resources, based on considerations of the economic costs and benefits of genomic innovations, was examined. Third, the benefits of these innovations for stakeholders (clinicians, patients, and families) at the clinical level were investigated. Fourth, the scope and limitations of genomics at the scientific level were discussed. Finally, the potential of genomics to improve health at the population level was explored. Providing an insight into the benefits of large genomic programmes on various levels, the workshop concluded by defining several criteria that should be considered to ensure benefits for society when implementing large genomic programmes.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
Actions
Access Document
- Files:
-
-
(Preview, Version of record, pdf, 773.4KB, Terms of use)
-
- Publisher copy:
- 10.1038/s41431-025-01844-7
Authors
+ Economic and Social Research Council
More from this funder
- Funder identifier:
- https://ror.org/03n0ht308
- Grant:
- ES/T00908X/1
+ Wellcome Centre for Ethics and Humanities
More from this funder
- Funder identifier:
- https://ror.org/05crdvn36
- Grant:
- 203132/Z/16/Z
- Publisher:
- Springer Nature
- Journal:
- European Journal of Human Genetics More from this journal
- Volume:
- 33
- Issue:
- 5
- Pages:
- 563–569
- Place of publication:
- England
- Publication date:
- 2025-04-08
- Acceptance date:
- 2025-03-25
- DOI:
- EISSN:
-
1476-5438
- ISSN:
-
1018-4813
- Pmid:
-
40200064
- Language:
-
English
- Keywords:
- Pubs id:
-
2117295
- Local pid:
-
pubs:2117295
- Deposit date:
-
2025-04-24
- ARK identifier:
Terms of use
- Copyright holder:
- Horn et al
- Copyright date:
- 2025
- Rights statement:
- © The Author(s) 2025. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.
If you are the owner of this record, you can report an update to it here: Report update to this record