Abstract
The rapid global expansion of genomic infrastructure presents a once-in-a-generation opportunity to embed equity, ethics and public value into how human genomic data are collected, governed and used. As genomics becomes increasingly central to health systems, biomedical research and artificial intelligence (AI)-driven innovation, policy decisions made today —on funding, governance and the deployment of resulting tools — will have far-reaching consequences. They will determine whose lives are improved, whose data and knowledge are recognized and represented, and whose needs remain invisible.
The 2024 World Health Organization (WHO) Guidance for Human Genome Data Collection, Access, Use and Sharing offers a timely normative foundation, articulating principles of equity, sustainability, solidarity and respect for rights (Box 1). These principles represent an essential first step. However, moving from principles to enforceable practice requires intentional, stepwise implementation across institutional, national and international governance frameworks, with clearly specified stakeholders, timelines and accountability mechanisms. Without this, genomic systems risk reproducing historical inequities through exclusionary data practices, extractive research models, and the unchecked deployment of biased datasets in research, diagnostic and decision-support applications.
This Comment represents a call to action for the implementation of a global agenda that encompasses several levels of governance. It is directed at national and international policymakers, funders and ethics bodies, as well as the broader scientific community, whose norms and practices ultimately shape how governance is enacted. It highlights persistent current disparities in the generation of and access to genomic data, the role of emerging national and regional initiatives, and governance models grounded in public trust and community engagement that offer insight into potential future directions. At a time when public investment in science, inclusive research and global collaboration are increasingly contested in parts of the world, reaffirming shared values and collective responsibility in genomics is not optional — it is essential. At the recent 79th World Health Assembly in Geneva, the endorsement of the WHA79.8 resolution on precision medicine highlights the urgency of this action statement.