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Research Data Management (RDM): Sensitive data

One stop shop for all things related to Research Data and how to manage your data throughout its entire lifecycle

Sensitive data


Sensitive data might include clinical or critical data, information about a person’s health or details of their private life, information relating to secret or sacred practices, or ecological data that could potentially put vulnerable species, ecosystems or environments at risk of harm or exploitation.


Sensitive data is commonly subject to legal and ethical obligations that impose restrictions on how it is accessed, used and handled. The data often can’t simply be published and made openly accessible.


But metadata records can help with sharing sensitive information, if the records describe the data without directly reporting any of the confidential information.

 

Publishing Sensitive Data

 

This ARDC flowchart asks 8 questions that will help you work out when and how to publish sensitive data as openly and ethically as possible.

 The ARDC Guide to Publishing Sensitive Data outlines:

  • The benefits of publishing your sensitive data and metadata can be significant as long as
  • appropriate steps are taken to meet your ethical and legal obligations.
  • Publishing your data and metadata means that others can discover it and cite it. Increasing the
  • visibility of your data this way can lead to new collaborations, improve the impact of your
  • research, and create opportunities for authorship.
  • You can publish a description of your data (i.e. metadata) without making the data itself openly
  • accessible.
  • You can place conditions around access to published data.

FAIR sensitive data

Can Sensitive Data be FAIR?

Sensitive data can be FAIR without being open. The FAIRness is made by a clear description on how access to the data can be granted e.g. for research purposes.   

A lot of research is based on sensitive personal data, data protected by IPR (Intellectual Property Rights) agreements or confidential data. This means that access to the data must be managed and restricted.  

 

D.B. Deutz, M.C.H. Buss, J. S. Hansen, K. K. Hansen, K.G. Kjelmann, A.V. Larsen, E. Vlachos, K.F. Holmstrand (2020). How to FAIR: a Danish website to guide researchers on making research data more FAIR. https://doi.org/10.5281/zenodo.3712065

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