The Governance of Genomic Data and AI in a Globalised Research Context: Recent Standards and Initiatives


Over the last two decades, genomic science and technologies have achieved important breakthrough whose effect have started to impact patient care. Given this success, biobanks and genomic database projects have multiplied in numbers and grown in scope. These large genomic research projects now store petabytes of data on the cloud. These projects require a well thought out governance structure to ensure that they are legally compliant, ethically sound and, ideally positioned to yield public benefits. International organizations, new and old, such as the World Health Organization, the UNESCO International Bioethics Committee, The Global Alliance for Genomics and Health and the International Society for Biological and Environmental Repository (ISBER) have sought to provide these new kinds of research projects policy frameworks and guidance on good practices for genomic projects. The current presentation will focus on recent initiatives to tackle three major developments faced by genomic researchers: 1) streamlining the data visiting governance model, 2) developing meaningful policies to address the challenges raised using AI in genomics and, 3) points to consider for achieving greater diversity in genomics datasets. It will identify the stage of development of these initiatives, possibilities for researchers to get involved, and will present the policies and tools that are already available for the community to use.