Legal implications of data sharing in biobanking research in low-income settings: The Nigerian experience

Abstract

It is increasingly recognised that effective and appropriate data sharing in biobanking research requires the development of models of good data-sharing policy capable of ensuring that the rights and privacy interests of participants are protected. However, the effectiveness and efficacy of biobank research depend on data and samples. In the same vein, making such data available to the research community generates tension between two important goals: advancing scientific goals, and protecting the individual privacy interests of the tissue source. More critically, data sharing requires the development of models that promote an environment in which privacy rights and interests of participants are protected throughout the lifecycle of biobank initiatives. Many ethical issues are raised when genomics research is conducted on populations characterised by lower average income and literacy levels, such as populations included in lower-middle income countries (LMICs). These issues are further exacerbated in Nigeria by cultural and religious inflections. In this paper, to analyse the implications of data sharing within the legal framework of an LMIC, an analysis of existing laws in Nigeria was conducted. It was discovered that there were no provisions relating directly to data sharing, and its governance framework could only be gleaned from the patchwork of laws on privacy and confidentiality in Nigeria. There is a need for ethical guidelines in Nigeria to be adapted to the changing landscape of science, which increasingly involves storage and secondary use of samples and data. Current laws are inadequate for the challenges presented by biobanking.