Communicating clearly about data sharing in genomics

Donrich Thaldar¹, Diya Uberoi², Adrian Thorogood³, Richard Milne^{4

5}, Ainsley J Newson⁶, Alison Hall⁷, David Glazer⁸, Paul Esselaar¹, Yann Joly⁹

Affiliations

¹ School of Law, University of KwaZulu-Natal, Durban, South Africa.
² Centre of Genomics and Policy, Institute of Genomics Medicine, McGill University, Montreal, QC, Canada. diya.uberoi@mcgill.ca.
³ Terry Fox Research Institute, Vancouver, BC, Canada.
⁴ Wellcome Connecting Science, Wellcome Sanger Institute, Hinxton, UK.
⁵ Kavli Centre for Ethics, Science, and the Public, University of Cambridge, Cambridge, UK.
⁶ Sydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
⁷ PHG Foundation, University of Cambridge, Cambridge, UK.
⁸ Verily Life Sciences, South San Francisco, CA, USA.
⁹ Centre of Genomics and Policy, Institute of Genomics Medicine, McGill University, Montreal, QC, Canada.

PMID: 40660395
PMCID: PMC12257658
DOI: 10.1186/s40246-025-00784-z

Review

Communicating clearly about data sharing in genomics

Donrich Thaldar et al. Hum Genomics. 2025.

. 2025 Jul 14;19(1):80.

doi: 10.1186/s40246-025-00784-z.

Authors

Donrich Thaldar¹, Diya Uberoi², Adrian Thorogood³, Richard Milne^{4

5}, Ainsley J Newson⁶, Alison Hall⁷, David Glazer⁸, Paul Esselaar¹, Yann Joly⁹

Affiliations

¹ School of Law, University of KwaZulu-Natal, Durban, South Africa.
² Centre of Genomics and Policy, Institute of Genomics Medicine, McGill University, Montreal, QC, Canada. diya.uberoi@mcgill.ca.
³ Terry Fox Research Institute, Vancouver, BC, Canada.
⁴ Wellcome Connecting Science, Wellcome Sanger Institute, Hinxton, UK.
⁵ Kavli Centre for Ethics, Science, and the Public, University of Cambridge, Cambridge, UK.
⁶ Sydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
⁷ PHG Foundation, University of Cambridge, Cambridge, UK.
⁸ Verily Life Sciences, South San Francisco, CA, USA.
⁹ Centre of Genomics and Policy, Institute of Genomics Medicine, McGill University, Montreal, QC, Canada.

PMID: 40660395
PMCID: PMC12257658
DOI: 10.1186/s40246-025-00784-z

Abstract

In the field of genomics, the secure and responsible sharing of data across institutions and borders is critical for advancing research and improving healthcare. However, challenges such as inconsistent terminology, data localization requirements, and cross-border data transfer regulations impede collaboration and innovation. To address these barriers, the Global Alliance for Genomics and Health (GA4GH), a global standards-setting organization in genomics, has developed a standardized lexicon of key terms for data sharing, including the nascent terms data visiting and federated data analysis. These definitions aim to improve communication within the genomics community by ensuring a consistent understanding of complex processes, addressing challenges like data localization and cross-border transfer. This article introduces these recently developed data sharing-related terms and considers their implications for data governance and global health research.

Supplementary Information: The online version contains supplementary material available at 10.1186/s40246-025-00784-z.

Keywords: Cross-border data transfer; Data visiting; Genomic data sharing.

PubMed Disclaimer

Conflict of interest statement

Declarations. Ethics approval and consent to participate: Not applicable. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

References

1. Amorim M, Silva S, Maia T, de Freitas C. Benefits and risks of sharing genetic data for research purposes: the views of patients and carers. Eur J Pub Health, 30, Issue Supplement_5, September 2020;ckaa165.365, 10.1093/eurpub/ckaa165.365
1. Villanueva AG, Cook-Deegan R, Robinson JO, McGuire AL, Majumder MA. Genomic Data-Sharing practices. J Law Med Ethics. 2019;47(1):31–40. 10.1177/1073110519840482 - PMC - PubMed
1. Global Alliance for Genomics and Health (GA4GH). https://www.ga4gh.org - PubMed
1. Joly Y, Dove E, Knoppers BM, Nicol D. The GA4GH regulatory and ethics work stream (REWS) at 10: an interdisciplinary, participative approach to international policy development in genomics. In: Corrales Compagnucci M, Minssen T, Fenwick M, Aboy M, Liddell K, editors. The law and ethics of data sharing in health sciences. Singapore: Springer Nature Singapore; 2024. pp. 13–32. 10.1007/978-981-99-6540-3_2
1. Kraemer J, Shekhar S, Hofmann J. Regulating algorithmic learning in digital platform ecosystems through data sharing and data siloing: Consequences for innovation and welfare. ICIS 2021 Proceedings (2021).

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Communicating clearly about data sharing in genomics

Affiliations

Communicating clearly about data sharing in genomics

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

Grants and funding

LinkOut - more resources

Full Text Sources