The Loss of Data Sovereignty: A Systemic Dilemma

Across healthcare institutions, technology companies, and governments, health data has become increasingly centralized. While it is collected and analyzed at massive scales, the original data owners — individuals — are excluded from decision-making and benefit distribution. Health data is inherently unique: it directly reflects individuals' health risks, while also possessing immense public and research value. Yet, under the current paradigm, individuals neither control their data nor share in the value it creates. Once health data is stripped of identity and aggregated into anonymized datasets, its source — the individual — is effectively removed from the ecosystem of ownership and rewards. This asymmetry has resulted in a systemic imbalance — where the benefits of data are privatized, but its value creation remains detached from those who generate it.