The challenges here are that data are often not ready to be shared, the quality needs to be improved, as well as the metadata and data structure. The data’s various sensitivity levels (high trust, low trust) can be addressed with different terms and conditions, for which templates are available (from the Data Sharing Coalition, for example). These should then be made ‘machine-readable and enforceable’. Note that ‘sensitive’ can also mean ‘commercially sensitive’.
Stefano, one of the attendees in the session, questioned who owned the data. He stated that the Marineterrein are the data users, not the owners. He wondered if the General Data Protection Regulation (GDPR) could answer that prickly problem. A brief discussion followed. It was said the GDPR does not talk of ownership but of data subjects and rights to process.
Attendee Mike was curious about the language used to describe the data commons. “Data space, data union, data commons. Do we even have a shared language?” We do not. Schreijer: “Focus on achievement and we’ll figure out language when things get legal.” Mike, who works with policy makers in the United States, asked for a compendium of cases in the EU and was referred to the Data Sharing Coalition.
Case 2: BioCommons
In 2003, the humane genome was successfully mapped and DNA sequencing became a million dollar business. Citizens enthusiastically submitted their DNA for ancestor research and genetic scans. Quirine van Eeden, concept designer at Waag, claimed in her presentation that valuable insights that arise from such scans, should not be in the hands of the few. “These data should be regarded as commons and shared with universities, healthcare institutes and some commercial parties. We want to start thinking about how to properly organise genetic data. For example, individuals could share only relevant parts of their DNA sequence. However, DNA also contains information about a person’s relatives. How to organise individual and collective informed consent? How can we assess the risk of sharing these data? Should consent be outsourced to parties who can evaluate that risk?
BioCommons, a project by Waag, show the diversity of questions in data commons and the limits of the GDPR. Session attendee Thomas: “The challenge is how to communicate the way the rules are set and made transparent. What are the rules for the rules?” AMdEX researcher Van Binsbergen replied the underlying system needs to be adaptable, because decisions will need to be revised continuously in this new domain. Debate followed on who should set the rules for BioCommons: collectives? Individuals? Individuals with or without the relatives? And how to guarantee the necessary transparency for consent? This entire topic captured the imagination and will be discussed in a separate session.
Case 3: Social housing and energy bills
Speaker Tom Griffioen is co-founder of Clappform. This data analytics platform works with Dutch local and regional government as well as social housing corporations. The company was asked to predict which of 20,000 households in a particular region would have the highest energy bills, so they could be offered a reduction in rent. The data restrictions in this case were steep: energy consumption data were not available at home level, nor were there any data on the tentants’ current financial situations. The challenge was how to share sensitive data in a fair and reliable way. To that purpose, Clappform is exploring the use of synthetic data. There was some confusion amongst the audience as to why the question had to be answered this way in the first place. Tenants would know how high their energy bills are and can apply for rent reduction themselves. Some suggested asking the owners of the data (the tenants) for help, because a possible reduction in rent would benefit them.
Text: Karina Meerman