Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Perspective
  • Published:

Governance of cross-border genomic data sharing through a human rights approach

Abstract

Cross-border genomic data sharing is crucial for advancing research progress, understanding of genetic diversity and international public health. However, this practice also leads to concerns regarding biosecurity, individual privacy and regulatory conflicts. Scientific communities often advocate data sovereignty approaches to address these challenges, yet related frameworks are often inadequate in their ability to address such challenges and have an overemphasis on national control and protectionism. They also may not fully consider the inherently transnational nature of genomic data and the need for a governance system that reflects the shared human heritage of the data and global interconnectivity. Instead, we propose here a human rights-based approach that surpasses territorial boundaries to promote shared responsibility and equitable research practices. A balanced governance framework that incorporates extraterritorial obligations and aligns data policy with human rights principles can safeguard individual privacy and biosecurity, encourage international collaboration and support ethically responsible genomic research.

This is a preview of subscription content, access via your institution

Access options

Buy this article

Prices may be subject to local taxes which are calculated during checkout

Fig. 1: Timeline of key events in the development of ETOs.

Similar content being viewed by others

References

  1. Stephens, Z. D. et al. Big data: astronomical or genomical? PLoS Biol. 13, e1002195 (2015).

    Article  PubMed  PubMed Central  Google Scholar 

  2. Bonomi, L., Huang, Y. & Ohno-Machado, L. Privacy challenges and research opportunities for genomic data sharing. Nat. Genet. 52, 646–654 (2020).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  3. Woods, A. Litigating data sovereignty. Yale Law J. 69, 328 (2018).

    Google Scholar 

  4. Dilanian, K. Congress wants to ban China’s largest genomics firm from doing business in the U.S. Here’s why. Center for Genetics and Society www.geneticsandsociety.org/article/congress-wants-ban-chinas-largest-genomics-firm-doing-business-us-heres-why (2024).

  5. Chen, Y. & Song, L. China: concurring regulation of cross-border genomic data sharing for statist control and individual protection. Hum. Genet. 137, 605–615 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  6. Watson, J. D. & Crick, F. H. Molecular structure of nucleic acids; a structure for deoxyribose nucleic acid. Nature 171, 737–738 (1953).

    Article  CAS  PubMed  Google Scholar 

  7. Collins, F. S., Morgan, M. & Patrinos, A. The Human Genome Project: lessons from large-scale biology. Science 300, 286–290 (2003).

    Article  CAS  PubMed  Google Scholar 

  8. Berens, M. E. & Marchant, G. E. Genetic samples and genetic philanthropy; Roth SC. What is genomic medicine? J. Med. Libr. Assoc. 107, 442–448 (2004).

  9. Goodwin, S., McPherson, J. D. & McCombie, W. R. Coming of age: ten years of next-generation sequencing technologies. Nat. Rev. Genet. 17, 333–351 (2016).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  10. Manolio, T. A., Brooks, L. D. & Collins, F. S. A HapMap harvest of insights into the genetics of common disease. J. Clin. Invest. 118, 1590–1605 (2008).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  11. All of Us Research Program Investigators. The ‘All of Us’ Research Program. N. Engl. J. Med. 381, 668–676 (2019).

    Article  Google Scholar 

  12. Wall, J. D. et al. The GenomeAsia 100K Project enables genetic discoveries across Asia. Nature 576, 106–111 (2019).

    Article  CAS  Google Scholar 

  13. The 1000 Genomes Project Consortium. A global reference for human genetic variation. Nature 526, 68–74 (2015).

    Article  Google Scholar 

  14. Jones, K. M. et al. Complicated legacies: the human genome at 20. Science 371, 564–569 (2021).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  15. Chattopadhyay, S. et al. Weaponized genomics: potential threats to international and human security. Nat. Rev. Genet. 25, 1–2 (2024).

    Article  CAS  PubMed  Google Scholar 

  16. Gao, Y. et al. A pangenome reference of 36 Chinese populations. Nature 619, 112–121 (2023).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  17. Caixin Media. Chinese pan-genome mapping on Nature draws controversy: should genetic data be shared or not? (Original in Chinese) https://www.zhishifenzi.blog.caixin.com/archives/268744 (2023).

  18. European Data Protection Board. 1.2 billion euro fine for Facebook as a result of EDPB binding decision https://www.edpb.europa.eu/news/news/2023/12-billion-euro-fine-facebook-result-edpb-binding-decision_en (2023).

  19. Xia, L., Cao, Z. & Zhao, Y. Paradigm transformation of global health data regulation: challenges in governance and human rights protection of cross-border data flows. Risk Manag. Healthc. Policy 17, 3291–3304 (2024).

    Article  PubMed  PubMed Central  Google Scholar 

  20. Thorogood, A. & Chokoshvili, D. in Handbook of Bioethical Decisions. Volume I: Decisions at the Bench (eds. Valdés, E. & Lecaros, J. A.) 345–369 (Springer International, 2023).

  21. OECD. Bridging the rural digital divide. OECD Digital Economy Papers No. 265 (OECD Publishing, 2018).

  22. Satam, H. et al. Next-generation sequencing technology: current trends and advancements. Biology 12, 997 (2023).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  23. OECD. Understanding the digital divide. OECD Digital Economy Papers No. 49 (OECD Publishing, 2001).

  24. Bezuidenhout, L. et al. Beyond the digital divide: towards a situated approach to open data. Sci. Publ. Policy 44, 464–475 (2017).

  25. Mulligan S. P. Cross-Border Data Sharing Under the CLOUD Act (Congressional Research Service, 2018).

  26. United States v. Microsoft Corp., 584 U.S.__, (2018) (US Supreme Court, 17 April 2018).

  27. Google LLC v. Commission nationale de l’informatique et des libertés (CNIL). Case C-507/17 (Court of Justice of the European Union, 24 September 2019).

  28. Data sovereignty in genomics and medical research. Nat. Mach. Intell. 4, 905–906 (2022).

  29. O’Doherty Kieran, C. et al. Toward better governance of human genomic data. Nat. Genet. 53, 2–8 (2021).

    Article  PubMed  Google Scholar 

  30. Irion, K. Government cloud computing and national data sovereignty. Policy Internet 4, 40–71 (2012).

    Article  Google Scholar 

  31. Alboaie, S. & Cosovan, D. Private data system enabling self-sovereign storage managed by executable choreographies. In Distributed Applications and Interoperable Systems (eds Chen, L. Y. & Reiser, H. P.) 83–98 (Springer International, 2017).

  32. Garrison, N. A. et al. Genomic research through an indigenous lens: understanding the expectations. Annu. Rev. Genomics Hum. Genet. 20, 495–517 (2019).

    Article  CAS  PubMed  Google Scholar 

  33. Carroll, S. R. et al. The CARE Principles for Indigenous Data Governance. Data Sci. J. 19, 43 (2020).

    Article  Google Scholar 

  34. First Nations Information Governance Centre (FNIGC). Ownership, Control, Access and Possession (OCAP): the Path to First Nations Information Governance (FNIGC, 2014).

  35. Alibaba Cloud Bao. Data sovereignty: storing information across borders. Alibaba Cloud www.alibabacloud.com/tech-news/a/data_storage/gufvwim9xf-data-sovereignty-storing-information-across-borders (2024).

  36. Chen, M. What is data sovereignty? Oracle www.oracle.com/jo/cloud/sovereign-cloud/data-sovereignty/ (2024).

  37. Besson, S. Sovereignty. Max Planck Encyclopedias of International Law (Oxford Univ. Press, 2011).

  38. UNESCO. Universal Declaration on the Human Genome and Human Rights (OHCHR, 1997).

  39. Kabata, F. & Thaldar, D. The human genome as the common heritage of humanity. Front. Genet. 14, 1282515 (2023).

    Article  PubMed  PubMed Central  Google Scholar 

  40. Maastricht Principles on Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights (ETO Consortium, 2013).

  41. UNESCO. International Declaration on Human Genetic Data (OHCHR, 2003).

  42. Global Alliance for Genomics and Health. Framework for Responsible Sharing of Genomic and Health-Related Data (GA4GH, 2014).

  43. Meron, T. Extraterritoriality of human rights treaties. Am. J. Int. Law 89, 78–82 (1995).

    Article  Google Scholar 

  44. General Comment No. 31: The Nature of the General Legal Obligation Imposed on States Parties to the Covenant CCPR/C/21/Rev.1/Add.13 (Human Rights Committee, 2004).

  45. Armed Activities on the Territory of the Congo (Democratic Republic of the Congo v. Uganda). Judgment (International Court of Justice, 19 December 2005).

  46. Loizidou v. Turkey. Chamber, judgment (European Court of Human Rights, 18 December 1996).

  47. Al-Skeini and Others v. the United Kingdom. Grand chamber, judgment (European Court of Human Rights, 7 July 2011).

  48. ETO Consortium. Human rights beyond borders: the Maastricht Principles turn five. Maastricht University www.maastrichtuniversity.nl/news/human-rights-beyond-borders-maastricht-principles-turn-five (2016).

  49. Smet, S. in When Human Rights Clash at the European Court of Human Rights: Conflict or Harmony? (eds Smet, S. & Brems, E.) 38–57 (Oxford Univ. Press, 2017).

  50. S. and Marper v. the United Kingdom. Application nos. 30562/04 and 30566/04, judgment (European Court of Human Rights, 4 December 2008).

  51. United Nations. International Covenant on Economic, Social and Cultural Rights. United Nations Treaty Series 993, 3 (1966).

    Google Scholar 

  52. United Nations. International Covenant on Civil and Political Rights. United Nations Treaty Series 999, 171 (1966).

    Google Scholar 

  53. Henkin L. International Law, Politics, Values and Functions (Cambridge Univ. Press, 1995).

  54. Report of the Working Group on the Issue of Human Rights and Transnational Corporations and Other Business Enterprises. UN document no. A/HRC/47/39 (United Nations Human Rights Council, 2021).

  55. Optional Protocol to the International Covenant on Civil and Political Rights (OHCHR, 2023).

  56. Shah, S. & Sivakumaran, S. Complementing UN human rights efforts through universal periodic review. J. Hum. Rights Pract. 16, 794–818 (2024).

    Article  Google Scholar 

  57. Stark, Z. et al. Australian Genomics: a federated model for integrating genomics into healthcare. Am. J. Hum. Genet. 105, 7–14 (2019).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  58. Dursi, L. J. et al. CanDIG: federated network across Canada for multi-omic and health data discovery and analysis. Cell Genom. 1, 100033 (2021).

    CAS  Google Scholar 

  59. Blomberg, N. & Lauer, K. B. Connecting data, tools and people across Europe: ELIXIR’s response to the COVID-19 pandemic. Eur. J. Hum. Genet. 28, 719–723 (2020).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  60. Cook-Deegan, R., Ankeny, R. A. & Maxson Jones, K. Sharing data to build a medical information commons: from Bermuda to the Global Alliance. Annu. Rev. Genomics Hum. Genet. 18, 389–415 (2017).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  61. Rehm, H. L. et al. GA4GH: international policies and standards for data sharing across genomic research and healthcare. Cell Genom. 1, 100029 (2021).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  62. Mulder, N. et al. H3Africa: current perspectives. Pharmgenomics Pers. Med. 11, 59–66 (2018).

    PubMed  PubMed Central  Google Scholar 

  63. Abimiku, A. et al. H3Africa Biorepository Program: supporting genomics research on African populations by sharing high-quality biospecimens. Biopreserv. Biobank. 15, 99–102 (2017).

  64. H.R.8333 — BIOSECURE Act (US House of Representatives, 2024).

  65. Executive Office of the President. Preventing Access to Americans’ Bulk Sensitive Personal Data and United States Government-Related Data by Countries of Concern. 89 FR 15421 (Federal Register, 2024).

  66. Human Genetic Resources Administration Regulation (China) (State Council of the People's Republic of China, 2019).

  67. General Data Protection Regulation (GDPR). Document 32016R0679 (European Union, 2016).

  68. European Union. European Health Data Space Regulation (EHDS) https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space-regulation-ehds_en (2022).

  69. Data Protection Act 2018 (UK Parliament, 2018).

  70. Genomics England. Genomics England Initiative www.genomicsengland.co.uk/ (2013).

  71. National Statement on Ethical Conduct in Human Research (National Health and Medical Research Council, Australian Research Council and Universities Australia, 2023).

  72. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022).

  73. Act on Protection of Personal Information. Act No. 57 of 2003 (Personal Information Protection Commission, 2003).

  74. Guidance on the Ethical Guidelines for Life-science and Medical Research Involving Human Subjects (Ministry of Education, Culture, Sports, Science and Technology (MEXT), Japan, 2021).

  75. Digital Personal Data Protection Act (Parliament of India, 2023).

  76. General Personal Data Protection Law (National Congress of Brazil, 2020).

  77. Covenant on Civil and Political Rights (ICCPR) (United Nations, 1966).

  78. International Covenant on Economic, Social and Cultural Rights (ICESCR) (United Nations, 1966).

  79. Convention on the Rights of the Child (CRC) (United Nations, 1989).

  80. International Convention on the Elimination of All Forms of Racial Discrimination (ICERD) (United Nations, 1965).

  81. Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (CAT) (United Nations, 1984).

  82. International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families (ICMW) (United Nations, 1990).

  83. International Convention for the Protection of All Persons from Enforced Disappearance (ICPED) (United Nations, 2006).

Download references

Acknowledgements

This work was mainly sponsored by the National Key Research and Development Program of China (grant no. 2022YFA1104700) to Y.P., the Strategic Priority Research Program of the Chinese Academy of Sciences (grant no. XDB0820000) to Y.P. and the Youth Innovation Promotion Association of the Chinese Academy of Sciences (grant no. 2021080) to Y.P.

Author information

Authors and Affiliations

Authors

Contributions

L.Y. and R.F. contributed equally to all aspects of the Perspective, including the conceptualization of the human rights approach and analysis of its implications for genomic data governance. Y.S. provided critical input during the review process, improving the Perspective’s clarity and rigor. Y.P. made comprehensive contributions throughout, leading the study’s conceptual, technical, legal and ethical integration and guiding the overall development of the Perspective. All authors reviewed and approved the final version.

Corresponding authors

Correspondence to Youhai Sun or Yaojin Peng.

Ethics declarations

Competing interests

The authors declare no competing interests.

Peer review

Peer review information

Nature Genetics thanks Yann Joly and Janitza Montalvo-Ortiz for their contribution to the peer review of this work.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Yu, L., Feng, R., Sun, Y. et al. Governance of cross-border genomic data sharing through a human rights approach. Nat Genet 57, 2090–2098 (2025). https://doi.org/10.1038/s41588-025-02252-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41588-025-02252-9

Search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing