Essay author Martin Tisné - Managing Director of Luminate and founder of the Open Government Partnership, the Open Data Charter and Publish What You Fund - takes readers to 2023 and introduces them to Rachel as she agrees to share her health data in exchange for monetary reward.
Tisné explores the ramifications of this decision as future employers access her data - which brands her as a "depressed unreliable" - and then reject her for work.
Using Rachel as a case study, he argues that "data ownership" is an appealing concept as it implies we have power and control. However, Tisné continues, it is impossible to ever truly own your data and ownership itself does not protect individuals from unfair practices.
Tisné advocates instead for a "new paradigm" around what data is and - crucially - the rights that pertain to it. In this view, data is not owned, and is rather relational - binding together people and institutions. People have rights around the generation and use of data, and governments have an obligation to protect those rights.
Like other rights - to freedom of speech, for example - data rights are fundamentally about securing a space for individual freedom and agency while participating in modern society.