Informed consent for data sharing

A guide to best practices in informed consent for enabling the sharing of research data beyond the purposes for which your data was collected.  

 

1. Introduction

In present days, not only participation in the research project has to be consented, but also the archiving and sharing of the data. This will result in reproducible research and data with long term value. If appropriate, consent forms should address the possibility of sharing data, future data publication (including storage in a repository) or long-term retention of data for reproducibility.

When you talk about ‘future use’ of the data this can mean different things. In order of increased reuse possibilities these could be:

  • Specific use
    Limited to the specific project under consideration; 
  • Extended use
    Future research projects that are either an extension of the original project or that are in the same general area of research (for example, genealogical, ethnographical, epidemiological, or chronic illness research);
  • Unspecified use
    Any future research. Specific future uses will, of course, be unknown, but participants can be informed of the conditions of potential reuse. For example, reuse could be limited to non-commercial use or anonymised data only.

Sharing of research data that relates to people can often be achieved using a combination of obtaining consent, anonymising data and regulating data access.