Journal article
Ethical and social implications of public–private partnerships in the context of genomic/big health data collection
- Abstract:
- This paper reports on the findings of an international workshop organised by the UK-France+ Genomics and Ethics Network (UK-FR + GENE) in 2022. The focus of the workshop were the ethical and social issues raised by public-private partnerships in the context of large-scale genomics initiatives in France, Germany, the United Kingdom and Israel, i.e. collaborations where commercial entities are given access to publicly held genomic data. While the public sector relies on partnerships with commercial entities to exploit the full potential of the data it holds, such collaborations may have an impact on the return of benefits to the public sector and on public trust, and subsequently challenge the social contract. The first part of this paper explores the ways in which the four countries examined respond to the challenges posed to the social contract, and what safeguards they put in place to secure public trust. The second part presents three approaches to address the challenges of private-public partnerships in secondary data use. In conclusion, this paper offers a set of minimum requirements for these partnerships within solidarity-based publicly funded healthcare systems. These include the necessity of public-private partnerships to (1) contribute to the public benefit and minimise harm produced by the use of publicly held data; (2) avoid prioritisation of commercial interests over robust governance structures to guarantee benefits to the public and protect donors, especially marginalised groups; (3) side-step the pitfalls of the rhetoric of solidarity and be transparent about the challenges to return the benefits to ‘all’.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
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(Preview, Version of record, pdf, 733.3KB, Terms of use)
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- Publisher copy:
- 10.1038/s41431-024-01608-9
Authors
+ Wellcome Trust
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- Funder identifier:
- https://ror.org/029chgv08
- Grant:
- 203132/Z/16/Z
+ Economic and Social Research Council
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- Funder identifier:
- https://ror.org/03n0ht308
- Grant:
- ES/T00908X/1
- Publisher:
- Springer Nature
- Journal:
- European Journal of Human Genetics More from this journal
- Volume:
- 32
- Issue:
- 6
- Pages:
- 736-741
- Publication date:
- 2024-04-16
- Acceptance date:
- 2024-03-28
- DOI:
- EISSN:
-
1476-5438
- ISSN:
-
1018-4813
- Language:
-
English
- Pubs id:
-
1990409
- Local pid:
-
pubs:1990409
- Deposit date:
-
2024-04-16
Terms of use
- Copyright holder:
- Horn et al.
- Copyright date:
- 2024
- Rights statement:
- © 2024, The Author(s). Open Access. 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.
- Licence:
- CC Attribution (CC BY)
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