Journal article
Determining a role for patient and public involvement and engagement (PPIE) in genomic data governance for cancer care
- Abstract:
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Comprehensive collections of cancer data, including genomic data, are needed to improve cancer risk prediction and treatments. A recent government review, Better, Broader, Safer: Using health data for research and analysis, has argued for high-quality Patient and Public Involvement and Engagement (PPIE) for ethical data use. In this paper we determine a role and justification for PPIE to govern uses of genomic data in fields like cancer. First, we analyse two public attitudes studies about the role of PPIE in genomics governance. Second, we characterise two ethically-significant features of the context of governing genomic data: 1) data aggregation leading to novel group formation, and 2) the hybrid territory of genomic cancer data uses. Thirdly, we bring together these aspects to describe a fully determined role for PPIE within an approach to governing cancer genomic data, which is tailored to major areas of ethical consideration. Our account is a novel interpretation of what PPIE is for in governance, how it may foster public support and how its success in so doing depends on it being tailored to context.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
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- Files:
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(Preview, Version of record, pdf, 536.8KB, Terms of use)
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- Publisher copy:
- 10.1038/s41431-025-01866-1
Authors
- Funder identifier:
- https://ror.org/00dpztj76
- Grant:
- C61296/A27223
- Publisher:
- Springer Nature
- Journal:
- European Journal of Human Genetics More from this journal
- Publication date:
- 2025-05-23
- Acceptance date:
- 2025-04-30
- DOI:
- EISSN:
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1476-5438
- ISSN:
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1018-4813
- Language:
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English
- Keywords:
- Pubs id:
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2125590
- Local pid:
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pubs:2125590
- Deposit date:
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2025-05-23
- ARK identifier:
Terms of use
- Copyright holder:
- Sahan et al.
- Copyright date:
- 2025
- Rights statement:
- Copyright © 2025, The Author(s). 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. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
- Licence:
- CC Attribution (CC BY)
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