A Legal Model for Genetic Information Disclosure: Nigeria's Framework as a Blueprint for Genomic Medicine Governance

The slides were presented at the Panel session on 'Health Law and Bioethics: Consent and Disclosure in Genetics and Health Data' at the SLSA 2025 Conference held in Liverpool on Wednesday, 16 April, 2025, 11:00-12:30.

ABSTRACT

The rise of genomic medicine presents a critical challenge of balancing patient confidentiality with relatives’ rights to access shared genetic information (GI), particularly in cases of hereditary health risks. This research examines Nigeria’s evolving legal framework, positioning it as a blueprint for genomic medicine governance. By analysing the National Health Act 2014 and the newly enacted Nigeria Data Protection Act 2023, this research identifies legal mechanisms that balance patient autonomy and the right to confidentiality with relatives’ rights to access GI.

Nigeria’s legal framework uniquely recognizes genetic information as shared data, empowering healthcare practitioners (HCPs) to disclose hereditary risks to at-risk relatives without breaching confidentiality. This approach resolves ethical and legal dilemmas observed in jurisdictions such as the UK (ABC v St. George’s NHS Trust), where the balancing test remains ambiguous, and Australia, where disclosure is limited to the private sector.

This research further argues that Nigeria’s legal and cultural context—where communal family values intersect with emerging genomic medicine practices—offers an innovative governance model for balancing confidentiality and disclosure. It is recommended that clear guidelines for HCPs be developed and awareness campaigns implemented to operationalize these rights effectively. This legal framework positions Nigeria as a leader in genomic medicine governance, offering a scalable model for improving public health outcomes through early detection, prevention, and legal clarity on shared genetic risks.