What can data trusts learn from the biobanking experience?
1st March 2022
Cambridge Data Trust:
Our interactions in the workplace, at home or with public services are increasingly mediated by digital technologies. These technologies have great potential to boost economic growth and enhance our wellbeing, but these novel patterns of data use can also leave us vulnerable in new ways.
Reaping the benefits of data and digital technologies will require robust new institutions or frameworks that can allow data sharing – helping develop new data-enabled products and services – while protecting individual rights and freedoms. Data trusts offer a mechanism to achieve this goal.
A data trust is a mechanism for individuals to take the data rights that are set out in law and pool these into an organisation – a trust – in which trustees make decisions about data use on their behalf. These trusts have received widespread attention in recent years from policymakers across the world. Further action is now needed to explore how data trusts could help tackle real-world data governance challenges.
Supported by a donation from the Patrick J McGovern Foundation, the Data Trusts Initiative will fund research and engagement activities at the interface of technology, policy and the law. By building a community of researchers and social entrepreneurs, the Initiative will shift discussions about data trusts from principle to practice.