Data Privacy and Governance of newborn whole genome sequencing in Nigeria and UK - Presented at the African Society of Human Genetics Conference held in Uganda in February 2025

Various jurisdictions are piloting new-born genome programs (NGP) as an addition to their new-born screening process, with the goal of carrying out whole genome sequencing (WGS) of new-borns. WGS of new-borns can provide advanced and detailed information about a baby's genetic makeup, opening up transformative possibilities for early detection of genetic disorders and variations. Despite the transformative possibilities and huge potential of NGP, its practical implementation in healthcare systems for clinical use presents ethical, legal, and social (ELSI) implications that warrant examination. Data privacy and storage are fundamental issues to consider in the NGP. I examined potential data privacy and governance issues through a comparative lens between the UK, with its advanced healthcare and legal systems, and Nigeria, a low-and-middle-income jurisdiction (LMIJ) with emerging genomic technologies and regulations. I took into account how the challenges in the UK differ from those in Nigeria when implementing the clinical use of WGS for new-borns. As common law jurisdictions, the UK and Nigeria offer a unique basis for comparing the ELSI issues in WGS from the developed and resource-constrained healthcare systems. This research will contribute to ongoing global discussion on the development and integration of WGS into new-born healthcare.