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Remove obstacles to sharing health data with researchers outside of the European Union

COVID-19 has shown that international collaborations and global data sharing are essential for health research, but legal obstacles are preventing data sharing for non–pandemic-related research among public researchers across the world, with potentially damaging effects for citizens and patients.

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Fig. 1: Involvement of academies in the international sharing of health data for research.

References

  1. European Union. EUR-Lex https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A02016R0679-20160504 (2016).

  2. European Data Protection Board. https://edpb.europa.eu/system/files/2021-05/edpb_letter_out2021-0086_un_en.pdf (2021).

  3. The European Academies Science Advisory Council, the Federation of European Academies of Medicine & the European Federation of Academies of Sciences and Humanities. https://doi.org/10.26356/IHDT (2021).

  4. European Union. EUR-Lex https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A12012P%2FTXT (2012).

  5. Wilkinson, M. D. et al. Sci. Data 3, 160018 (2016).

    Article  Google Scholar 

  6. Richter, G. et al. Eur. J. Hum. Genet. 27, 841–847 (2019).

    Article  Google Scholar 

  7. Ursin, G. et al. Lancet 394, 1902–1903 (2019).

    PubMed  Google Scholar 

  8. Court of Justice of the European Union. InfoCuria Case-law https://curia.europa.eu/juris/liste.jsf?num=C-311/18 (2020).

  9. Shilo, S., Rossman, H. & Segal, E. Nat. Med. 26, 29–38 (2020).

    Article  CAS  Google Scholar 

  10. European Data Protection Board. https://edpb.europa.eu/system/files/2021-06/edpb_recommendations_202001vo.2.0_supplementarymeasurestransferstools_en.pdf (2021).

  11. Royal Society. https://royalsociety.org/-/media/policy/projects/privacy-enhancing-technologies/privacy-enhancing-technologies-report.pdf (2019).

  12. Scheibner, J. et al. J. Med. Internet Res. 23, e25120 (2021).

    Article  Google Scholar 

  13. European Commission. https://ec.europa.eu/info/law/law-topic/data-protection/international-dimension-data-protection/adequacy-decisions_en (accessed 2 May 2021).

  14. European Commission. https://ec.europa.eu/commission/presscorner/detail/en/ip_21_3183 J (28 June 2021)

  15. Eiss, R. http://www.iscintelligence.com/archivos_subidos/robert_eiss_gdpr_us-eu_cooperation_in_biomedical_science_isc_gdpr_seminar_19_nov_2019.pdf (2019).

  16. Eiss, R. Nature 584, 498 (2020).

    Article  CAS  Google Scholar 

  17. Rabesandratana, T. Science https://doi.org/10.1126/science.aba2926 (2019).

    Article  PubMed  Google Scholar 

  18. United Nations Secretariat on behalf of United Nations System Organisations. https://edpb.europa.eu/sites/edpb/files/webform/public_consultation_reply/2020.05.14_letter_to_edpb_chair_with_un_comments_on_guidelines_2-2020.pdf (2020).

  19. European Data Protection Board. https://edpb.europa.eu/sites/edpb/files/files/file1/edpb_guidelines_2_2018_derogations_en.pdf (2018).

  20. European Data Protection Board. https://edpb.europa.eu/sites/edpb/files/files/file1/edpb_guidelines_202003_healthdatascientificresearchcovid19_en.pdf (2020).

  21. Peloquin, D., DiMaio, M., Bierer, B. & Barnes, M. Eur. J. Hum. Genet. 28, 697–705 (2020).

    Article  Google Scholar 

  22. Norwegian Institute of Public Health & Cancer Registry of Norway. https://edpb.europa.eu/sites/edpb/files/webform/public_consultation_reply/edpb_guidelines_niph_crn_comments_20200518.pdf (2020).

  23. Nordic Society of Human Genetics and Precision Medicine. https://edpb.europa.eu/sites/edpb/files/webform/public_consultation_reply/nshg-pm_comments_edpb_recommendations_012020.pdf (2020).

  24. Bovenberg, J., Peloquin, D., Bierer, B., Barnes, M. & Knoppers, B. M. Science 370, 40–42 (2020).

    Article  CAS  Google Scholar 

  25. European Parliament. https://www.europarl.europa.eu/doceo/document/TA-9-2021-0256_EN.html (2021).

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Acknowledgements

We acknowledge the support of the European Academies Science Advisory Council, the Federation of European Academies of Medicine, and All European Academies, as well as all members of the working group that contributed to writing the joint report3.

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Correspondence to Rosa Castro.

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Bentzen, H.B., Castro, R., Fears, R. et al. Remove obstacles to sharing health data with researchers outside of the European Union. Nat Med 27, 1329–1333 (2021). https://doi.org/10.1038/s41591-021-01460-0

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