Genomic Data Governance Frameworks for Pan-African Biobanks

The unprecedented scale of genomic biobanking spread in Africa gives an indication of a necessary need to institute governance frameworks that facilitate innovation in healthcare and ensure maintained privacy, rights, and sharing-of-benefits in an equitable way between participants. This article outlines the governance of genetic data in Pan-African biobanks, which is fragmented and not standardised, resulting in a range of ethical, legal, and social issues. The research is based on a comparative study of policy and law and uses various regional and global instruments such as the General Data Protection Regulation (GDPR), the Health Insurance Portability and Accountability Act (HIPAA), the Global Alliance for Genomics and Health (GA4GH) and the directives of the African Union and national policies. The survey covered 12 African countries. The main finding was that, although many places have general data-protection laws, only a small number have specific genetic protections that have been designed to match the ethical and privacy requirements of biobanking. The purpose of the research was to reach the threefold goals: (i) to ascertain the best ways of achieving genetic data governance through global and African models; (ii) to assess the gaps and inconsistencies of the African frameworks that are in place; and (iii) to suggest the creation of a unified Pan-African framework, which would bridge the gap between innovation, cultural values, privacy protection, and equitable benefit-sharing. The results imply that although the global principles hold significant weight, their correctness in Africa hinges upon ethics being rooted in the local culture, the cross-border harmonisation, and the engagement of a wide range of stakeholders. The suggested Pan-African governance framework, with the support of a Five-Pillar Policy Roadmap, gives a feasible approach to decision-makers and organisations.