Dr Jessica Bell1
1University Of Warwick Law School
Data trusts are an emerging and varied concept; proposed as a mechanism of data stewardship and a legal structure for data governance with the potential to empower individuals and communities by authorising others (broadly referred to as ‘data intermediaries’) to act on their behalf.
This presentation will present the key findings from a multi-disciplinary, bi-national workshop funded by the Data Trusts Initiative to explore the concept of a data trust in the health research context. In collaboration with Generation Victoria (‘GenV’), a longitudinal birth cohort of 150,000 Australian new-borns and parents for discovery and interventional research, we examined the suitability and desirability of data trusts for a range of stakeholders, as well as the legal, ethical and practical considerations for the translation of data trusts from theory into practice using GenV and longitudinal population studies as a case study. Findings presented will include:
- How data trust mechanisms and principles fit within the existing health research governance landscape;
- Whether actors are well placed to adopt roles within a data trust, and the role of trustees in this context;
iii. Views on the comparative trustworthiness of collective data stewardship models;
- Data trusts as a vehicle for engagement and involvement of minors during the lifetime of a longitudinal research study;
- Stakeholder views on the overall desirability of data trusts and added value for health research.
We conclude that while the data trust model holds promise in this context, it raises as many questions as answers at this early stage.
Biography:
Jessica works at the intersection of law, technology and health. In January 2021 Jessica joined the Warwick Law School as Assistant Professor and prior to this was Research Fellow at the Melbourne Law School and the HeLEX Centre for Health, Law and emerging technologies, University of Oxford.