Comment Form: WHO Principles for Human Genome Access, Use, and Sharing

Abstract

Worldwide, vast amounts of genomic data have been consented to, collected, used and stored for research. Governance frameworks have also been developed to ensure that past, present and future uses comply with ethical, legal, and social standards and norms. Ensuring that these principles align with existing governance frameworks is thus crucial.

On behalf of the Global Alliance for Genomics and Health (GA4GH), we would like to emphasize the importance of grounding these principles in the universality and indivisibility of all human rights, including the right to privacy, the highest attainable standard of health, and the right of everyone to “share in scientific advancement and its benefits.” The WHO’s report Accelerating Access to Genomics for Public Health (2022) already recognizes the need for frameworks to be guided by fundamental human rights. We thus encourage the WHO to be more explicit about the human rights foundations for the development of these principles and shy away from restricting the application of the principles to an individualistic approach. By centering this document on human rights, the WHO will take an important step in ensuring that future global policies align with existing international conventions, regulations, codes and policies.

Going forward, it will also be important that these principles guide policymakers and relevant stakeholders to better govern data sharing. While the primary purpose of these principles is to guide future researchers and institutions, it remains unclear how these guidance points are to be implemented. Below we provide our specific comments as to each of the sections.

Keywords: Genomics, data sharing, health