Viewpoint | Published:

The FAIR guiding principles for data stewardship: fair enough?

European Journal of Human Geneticsvolume 26pages931936 (2018) | Download Citation

Subjects

Abstract

The FAIR guiding principles for research data stewardship (findability, accessibility, interoperability, and reusability) look set to become a cornerstone of research in the life sciences. A critical appraisal of these principles in light of ongoing discussions and developments about data sharing is in order. The FAIR principles point the way forward for facilitating data sharing more systematically—provided that a number of ethical, methodological, and organisational challenges are addressed as well.

Access optionsAccess options

Rent or Buy article

Get time limited or full article access on ReadCube.

from$8.99

All prices are NET prices.

References

  1. 1.

    Munafò MR, Nosek BA, Bishop DVM, et al. A manifesto for reproducible science. Nat Hum Behav. 2017;1:0021.

  2. 2.

    Fecher B, Friesike S, Hebing M. What drives academic data sharing? PLoS One. 2015;10:e0118053.

  3. 3.

    European Commission. Open innovation, open science, open to the world—a vision for Europe. European Commission, DG Research and Innovation, 2016; https://bookshop.europa.eu/en/open-innovation-open-science-open-to-the-world-pbKI0416263/.

  4. 4.

    Editors TPM. Can data sharing become the path of least resistance? PLoS Med. 2016;13:e1001949.

  5. 5.

    Borgman CL. Big data, little data, no data: scholarship in the networked world. Cambridge, Massachusetts: The MIT Press; 2015.

  6. 6.

    Wilkinson MD, Dumontier M, Aalbersberg IjJ, et al. The FAIR guiding principles for scientific data management and stewardship. Sci Data. 2016;3:160018.

  7. 7.

    Data management - H2020 Online Manual. https://ec.europa.eu/research/participants/docs/h2020-funding-guide/cross-cutting-issues/open-access-data-management/data-management_en.htm. Accessed 14 Dec 2016.

  8. 8.

    GA4GH. https://www.ga4gh.org/. Accessed 10 Dec 2017.

  9. 9.

    The FAIR data principles explained. Dutch Techcentre Life Sci. https://www.dtls.nl/fair-data/fair-principles-explained/. Accessed 16 Feb 2018.

  10. 10.

    Holub P, Swertz M, Reihs R, van Enckevort D, Müller H, Litton J-E. BBMRI-ERIC directory: 515 biobanks with over 60 million biological samples. Biopreserv Biobanking. 2016;14:559–62.

  11. 11.

    Lappalainen I, Almeida-King J, Kumanduri V, et al. The European genome-phenome archive of human data consented for biomedical research. Nat Genet. 2015;47:692.

  12. 12.

    Genomic Data Toolkit. https://www.ga4gh.org/ga4ghtoolkit/genomicdatatoolkit/. Accessed 10 Dec 2017.

  13. 13.

    BRCA Exchange. http://brcaexchange.org/. Accessed 10 Dec 2017.

  14. 14.

    Mons B, Neylon C, Velterop J, et al. Cloudy, increasingly FAIR; revisiting the FAIR Data guiding principles for the European Open Science Cloud. Inf Serv Use. 2017;37:49–56.

  15. 15.

    Lezaun J, Montgomery CM. The pharmaceutical commons: sharing and exclusion in Global Health Drug Development. Sci Technol Hum Values. 2014;40:3–29.

  16. 16.

    Knoppers BM. Framework for responsible sharing of genomic and health-related data. Springer, 2014.

  17. 17.

    Pisani E, Aaby P, Breugelmans JG, et al. Beyond open data: realising the health benefits of sharing data. BMJ. 2016;355:i5295.

  18. 18.

    Shabani M, Knoppers BM, Borry P. From the principles of genomic data sharing to the practices of data access committees. EMBO Mol Med. 2015;7:e201405002.

  19. 19.

    Murray MJ. Thanks for sharing: the bumpy road towards truly open data. BMJ. 2016;352:i849.

  20. 20.

    Shabani M, Borry P. Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation. Eur J Hum Genet 2018;26:149–156

  21. 21.

    Dyke SOM, Philippakis AA, Argila JRD, et al. Consent codes: upholding standard data use conditions. PLoS Genet. 2016;12:e1005772.

  22. 22.

    A Code of Conduct for Health Research—A code of conduct for health research regarding the EU GDPR. http://code-of-conduct-for-health-research.eu/. Accessed 16 Feb 2018.

  23. 23.

    Spertus JA. The double-edged sword of open access to research data. Circ Cardiovasc Qual Outcomes. 2012;5:143–4.

  24. 24.

    Head ML, Holman L, Lanfear R, Kahn AT, Jennions MD. The extent and consequences of P-hacking in science. PLoS Biol 2015; 13. https://doi.org/10.1371/journal.pbio.1002106.

  25. 25.

    Khoury MJ, Bertram L, Boffetta P, et al. Genome-wide association studies, field synopses, and the development of the knowledge base on genetic variation and human diseases. Am J Epidemiol. 2009;170:269–79.

  26. 26.

    Mittelstadt BD, Floridi L. The ethics of big data: current and foreseeable issues in biomedical contexts. Sci Eng Ethics. 2015;22:303–41.

  27. 27.

    Mostert M, Bredenoord AL, Biesaart MCIH, van Delden JJM. Big data in medical research and EU data protection law: challenges to the consent or anonymise approach. Eur J Hum Genet 2015. https://doi.org/10.1038/ejhg.2015.239.

  28. 28.

    Cavoukian A, Jonas J. Privacy by design in the age of big data. Information and Privacy Commissioner of Ontario, Canada, 2012. https://datatilsynet.no/globalassets/global/seminar_foredrag/innebygdpersonvern/privacy-by-design-and-big-data_ibmvedlegg1.pdf. Accessed 21 Feb 2017.

  29. 29.

    Vayena E, Blasimme A. Biomedical big data: new models of control over access, use and governance. J Bioethical Inq. 2017;14:1–13.

  30. 30.

    Erlich Y, Williams JB, Glazer D, et al. Redefining genomic privacy: trust and empowerment. PLoS Biol. 2014;12:e1001983.

  31. 31.

    Kaye J, Whitley EA, Lund D, Morrison M, Teare H, Melham K. Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet. 2015;23:141–6.

  32. 32.

    Boeckhout M, Reuzel R, Zielhuis G. The donor as partner. How to involve patients and the public in the governance of biobanks and registries. BBMRI-NL, 2014; http://www.bbmri.nl/wp-content/uploads/2015/10/guidelineeng_def.pdf.

  33. 33.

    Hicks D, Wouters P, Waltman L, de Rijcke S, Rafols I. Bibliometrics: the Leiden Manifesto for research metrics. Nature. 2015;520:429–31.

Download references

Acknowledgements

Boeckhout’s work was financially supported by BBMRI-NL, a Research Infrastructure financed by the Dutch government (NWO), no. 184033111. Thanks to the anonymous reviewers and to Jan-Willem Boiten for comments on a draft version.

Author contributions

MB came up with the initial idea for this paper. The idea was elaborated on in discussion with GZ and ALB. MB led the drafting process, to which GZ and ALB contributed with revisions, additions and comments in a number of iterations. The authors provide complimentary expertise to the topic: MB is a philosopher and sociologist of science by training; GZ is an epidemiologist and biobanker; ALB is professor in the ethics of biomedical innovation. MB is the guarantor of the article.

Author information

Affiliations

  1. Julius Center for Health Sciences and Primary Care, Department of Medical Humanities, University Medical Center Utrecht, Utrecht, The Netherlands

    • Martin Boeckhout
    •  & Annelien L. Bredenoord
  2. Parelsnoer Institute, Utrecht, The Netherlands

    • Gerhard A. Zielhuis
  3. Radboud Biobank, Radboud university medical center, Nijmegen, The Netherlands

    • Gerhard A. Zielhuis
  4. Department for Health Evidence, Radboud university medical center, Nijmegen, The Netherlands

    • Gerhard A. Zielhuis

Authors

  1. Search for Martin Boeckhout in:

  2. Search for Gerhard A. Zielhuis in:

  3. Search for Annelien L. Bredenoord in:

Conflict of interest

The authors declare that they have no conflict of interest.

Corresponding author

Correspondence to Martin Boeckhout.

About this article

Publication history

Received

Revised

Accepted

Published

DOI

https://doi.org/10.1038/s41431-018-0160-0