The final session at the 5th Data Donation Symposium at the Weizenbaum-Institut in Berlin starts with Felicia Loecherbach, whose interest is in the embedding of FAIR (findable, accessible, interoperable, reusable) principles into data donation procsses. Data donation approaches are still not very standardised, and highly study-specific; this is not necessarily the best approach, and more standardisation of approaches and tools could help embed FAIR principles here.
The RIGHTS project in the Netherlands seeks to advance these ideas by developing standards and templates for researchers, data stewards and ethics review boards, and policy-makers at research institutions, while building on existing data donation infrastructures and communities; this is a collaborative effort between a number of relevant organisations in this field. In doing this, it is important to consider that FAIR is not the same as open: the aim here is to make donated data as open as possible, but as closed as necessary, in order to protect all participants but also enable further reuse as required.
This might entail the definition of various access levels (open, on request, secure research environment only, not shared), for instance, and distinctions between sensitive content and less sensitive metadata, for instance; these can be calibrated through further engagement with current and prospective data donation researchers across a broad range of project scenarios.
Key issues in such scenarios tend to relate to future reuse, data access provisions, secure analysis environments, and the sharing of metadata separate from the data themselves; these now inform the further development of FAIR-enhanced data donation approaches and processes. Such advances can make data donation more valuable to research, but the challenges in doing this work need to be considered along the way, and there is now also a need to expand these ideas beyond the RIGHTS project’s specific focus on the context of the Netherlands.
