Governance of cross-border genomic data sharing through a human rights approach

Abstract

Cross-border genomic data sharing is crucial for advancing research progress, understanding of genetic diversity and international public health. However, this practice also leads to concerns regarding biosecurity, individual privacy and regulatory conflicts. Scientific communities often advocate data sovereignty approaches to address these challenges, yet related frameworks are often inadequate in their ability to address such challenges and have an overemphasis on national control and protectionism. They also may not fully consider the inherently transnational nature of genomic data and the need for a governance system that reflects the shared human heritage of the data and global interconnectivity. Instead, we propose here a human rights-based approach that surpasses territorial boundaries to promote shared responsibility and equitable research practices. A balanced governance framework that incorporates extraterritorial obligations and aligns data policy with human rights principles can safeguard individual privacy and biosecurity, encourage international collaboration and support ethically responsible genomic research. This Perspective proposes a human rights-based governance framework for cross-border genomic data sharing, addressing limitations of data sovereignty approaches while balancing privacy, security and global research collaboration.