A Research Agenda for Data Trusts (Working Paper 3)

Data Trusts Initiative
, The Data Trusts Initiative , 2021.

Abstract

Despite much progress in establishing the case for data trusts as a necessary innovation in data stewardship, important questions remain about the function and form that such trusts should take when responding to real-world challenges. Addressing these questions requires further work to clarify how data trusts fit in the current data governance landscape, and to identify the operational strategies that can ensure their success.

To better understand how data trusts can be taken from theory to practice, the Data Trusts Initiative is funding seven research projects that each address a gap in current understandings. These projects ask:

  • What do recent use cases tell us about operational strategies for data trusts?
  • How can legal mechanisms associated with data trusts enhance participation in healthcare research?
  • How might data trusts operate in the urban context?
  • How can data trusts support civic engagement and environmental stewardship in local communities?
  • How can data trusts be created in civil law jurisdictions?
  • Does the General Data Protection Regulation (GDPR) allow individuals to mandate their data rights to a trust (or other data intermediary)?
  • What combination of technical and legal infrastructure can give individuals more control over data about them?