Proposes a model addressing genetic data governance challenges in private and public contexts, indicating pathways for stakeholders.
Human genetic data are simultaneously deeply personal, familial, and strategically valuable, raising regulatory challenges that individual-centered privacy frameworks only partially address. This is highlighted by the recent high-profile bankruptcy filing by 23andMe, which triggered widespread public concerns extending beyond consumer privacy interests to potential national security risks. To address this, this paper proposes a three-layer diagnostic model for more comprehensive analysis of genetic data governance: (1) individual privacy as sensitive personal data; (2) relational and group (privacy) interests reflecting genetic data's shared nature; and (3) the state or strategic layer treating genetic information as a national asset relevant to public health and security. Drawing on comparative examination of select jurisdictions and critical review of scholarship, this integrated framework offers researchers, policymakers, and private actors a practicable pathway to navigate the complex governance challenges posed by genetic data.
No takes yet. Share an insight, caveat, or question.
Ruoxin Su (2026) studied this question.
Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context: