PulseExploreJournal ClubDebatesTrendingResearchersJournals
Instagram
HomeExploreJournal ClubTrending
Synapse
⌘+K
Synapse
April 12, 2026The Journal of Law Medicine & Ethics1 citationsOpen Access

Beyond Individual Privacy: A Layered Diagnostic Model for Analyzing Genetic Data Governance

RSRuoxin Su

Key Points

  • The aim is to develop a comprehensive model for understanding genetic data governance beyond individual privacy.
  • Proposed a three-layer diagnostic model: individual privacy, relational group interests, and state strategic layer.
  • Conducted a comparative examination of jurisdictions related to genetic data governance.
  • Performed a critical review of existing scholarship in the field.
  • Identified gaps in current individual-centered privacy frameworks for genetic data.
  • Highlighted the need to address relational and group interests alongside individual privacy.
  • Showed that genetic information poses potential national security implications.

Abstract

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.

Ask AI
Helpful
Bookmark
Share
View Full Paper

Cite This Study

Ruoxin Su (2026) studied this question.

synapsesocial.com/papers/69db37404fe01fead37c549chttps://doi.org/10.1017/jme.2026.10259
Ask AI
Helpful
Bookmark
Share
View Full Paper