Informing citizens about their data rights

Data is often described as the ‘new oil’, but do citizens know how their own well is being tapped? Are they fully informed about their rights regarding their personal data? And who is ensuring that the most vulnerable groups in society are aware of their rights?

One aim of the Panelfit project is to increase the quantity and quality of the information available about ethical and legal issues posed by ICTs – to policy-makers, professionals, journalists and the general public. A major output for the latter group will be a citizens’ information pack, which will include a version tailored to the needs of vulnerable groups.

To plan the content and structure of this information pack, Panelfit organised a two-day workshop in Berlin in March to ask the following questions:

  • What do people know about the EU’s General Data Protection Regulation (GDPR), and what actions have they taken in response?
  • What challenges are people experiencing in ensuring the protection and security of project data, and compliance with the GDPR, within existing data management processes/systems?
  • What information/tools/resources do they need to overcome these challenges?
  • What are the best formats/channels for receiving, sharing and acting upon this information?
  • What is the most appropriate structure/format(s) for the citizens’ information pack?

These issues are also highly relevant to the citizen science community, as many projects generate and manage huge amounts of data – including personal data. In light of this, the workshop was co-hosted by EU-Citizen. Science, ECSA, COST Action 15212 and ICM-CSIC.

The report from the workshop is now available. Some of the key findings include that:

  • there is not always a shared understanding of all the terms around data protection and the ethical and legal issues around ICTs
  • there is not yet agreement on how data protection laws should be applied to research, including citizen science research
  • to ensure vulnerable citizens’ data rights and other ICT-related rights are met, it may be easier to consider such groups in terms of the barriers they encounter, then focus on strategies for overcoming each barrier separately – rather than seeking to identify or create ‘solutions’ for each vulnerable group.

During the workshop, the participants started an exercise to map vulnerable groups in Europe. The results from this can be found in the annex to the workshop report, and will hopefully be a useful list for the citizen science community to build on in its efforts for greater inclusivity and representativeness.

Being held just as the COVID-19 pandemic was taking hold of Europe, the workshop also provided a useful learning experience for how to work collaboratively in a time of restricted travel. As not all participants could travel to Berlin, the report was written in a two-stage process: immediately after the physical workshop, and then edited and extended collaboratively online. This approach is one that could prove useful in the future, not just during times of travel restrictions, but also to facilitate participation in workshops for those who may be less able or less willing to travel.