We are investigating how the creation of a novel institution, the health-data bank, can increase data privacy and security, and at the same time reduce the barriers to consent based data sharing in the medical and biotech industries.
We understand individual self-agency to refer to the rights of individuals to obtain, store, transfer and transact their health data. Importantly, this means they should have some degree of control over 3rd party access to their data. We are developing a contract-based framework for balancing individual rights with the rights of the institutions that, through financial or other means, contribute to data generation.
Granting self-agency to individuals can accelerate the progress of science in 3 key ways: it can enable anonymous search & solicitation - ensuring research institutions can discover the data they need, it can incentivize compensated data sharing - increasing public engagement with an essential step in the scientific process, and it has the potential to improve public trust in institutions.