Archiving and Publishing Human Subject Data

Your project nears its completion. It is time to prepare your data for archiving and publishing in accordance with the FAIR principles, to make your data as open “as possible and as closed as necessary”. When research involves human participants, there is a tension between protecting the privacy of your participants and meeting expectations to archive and publish data so others can verify and reuse your work. Navigating this playing field requires careful planning and thoughtful decisions, putting safeguards in place that protect participants, while still allowing responsible access for future research. You can use the sections below to guide you in this process.

Check whether you can further minimize your data, with two goals of archiving in mind:

• Select and organize the data and other materials that are needed to validate your findings;
• Select and organize the data and other materials that are potentially valuable for further research by you, your team, or fellow researchers.

Often it is not necessary to keep all collected data for the purpose of validating your findings or for researchers to reuse your data.

• Limit the (personal) data and materials you archive to the ones that you need for verification of your research. Follow the procedures in the destruction protocol(s) that you designed. Add these protocol(s) to your data package, publication package or archive. (e.g. anonymised consent forms can be archived, while consent forms containing personal data can be deleted in accordance with the UG protocol)
• Determine whether it is possible to de-identify before publishing, while also keeping in mind the usability of your dataset.

FAIR data does not necessarily mean that all your data and materials need to openly available. Even after de-identification, there can be good reasons to restrict access to your data. The objective is to have data as open as possible, and as closed and protected as necessary.

Consider applying a ‘layered’ approach to your (de-identified) files by scoring your files in terms of sensitivity.

Publish your dataset in a recognized data repository such as DataverseNL, on the condition that no other reasons for restricting access apply. Allow for reuse by adding a license (for instance, a Creative Commons license) and use the persistent identifier (e.g., DOI) for data citation.

Publish your dataset in a recognized repository such as DataverseNL, under restricted access. Determine the terms of access and use for external parties that would like to reuse your data. Make sure that these terms of access align with the informed consent.

When your data still contains highly sensitive information, do not publish this data openly or with access controls in a data repository. Instead, archive your data in accordance with the research data policy of your faculty or institute. The UG DCC can assist in developing a procedure for making these sensitive data available for reuse under well-defined conditions. Make sure that these conditions are in line with the informed consent.

→ Go back to the Privacy & Data protection home page