From Research Data Ethics Principles to Practice: Data Trusts as a Governance Tool

Artificial intelligence and data science offer tools that could advance the pace of discovery across research domains. By processing large datasets, extracting insights from new data sources, and identifying patterns or relationships that would not otherwise have been visible to researchers, these technologies can advance understandings of science and society. Achieving this potential will require that researchers have access to data that is governed in ways that respect both the benefits that data use can bring and the risks to individuals, communities and society that can follow. Recent years have seen numerous examples of the ways in which these risks can be manifest, some of which also serve to highlight the ethical implications of pursuing behavioural research using advanced data analytics. Over the same period, researchers and policymakers have been active in developing frameworks that enable ethical data use. A range of data sharing structures exist, which are differently suited to achieving different governance aims. In seeking to connect the desire to share data with concerns about individual rights, data trusts offer a promising mechanism for future development. For researchers, data trusts offer a means of accessing multiple data types in a more streamlined way than current contract-based structures allow. For research participants, they provide a route to exerting informed influence over how and for what purposes data about them is used.