Shared health data can be invaluable to medical research. However, risks around privacy, security and discrimination contribute to maintaining a siloed approach to data gathering. Madeleine’s work focuses on decentralising control and power over health data to empower contributors whilst advancing research. She is developing an open approach to human subjects research, with a particular focus on genetic research. This approach will enable research participants, individually and as a community, to access and explore their own data. They can manage and share this data, generated by any study, openly with new projects. The right to choose whether and how to share their data turns subjects into active participants.
We support Madeleine because she asks the right questions and is bravely seeking the answers. At the moment there are many more questions than answers for us in this field. How will this work technically? Can it work socially? What impact will the research findings have on individuals and on society? Most of these questions will not be answered over the next year. Madeleine will however explore, experiment and in doing so learn enough to help us think of the next steps.