Private commercial companies sharing health-relevant consumer data with health researchers in sub-Saharan Africa: an ethical exploration

Abstract

ABSTRACT Sharing large digital-first datasets, including for purposes for which they were not originally intended, is a hallmark of the “big data revolution”. Through their routine operations, private commercial companies collect massive amounts of diverse data from their customers, some of which may interest those working in the public sector, such as health researchers. Researchers and government agencies worldwide have been increasingly using data from commercial entities (such as Google, Microsoft, Apple, Facebook/Meta, Twitter/X and Amazon, among others) to generate health-related insights. This article explores ethical issues raised by the practice of commercial companies sharing consumer data with third parties for the purposes of promoting health in the sub-Saharan African (SSA) context. First, as an illustrative example, it examines some of the ways telecommunication (telecom) companies in SSA shared mobility data from cellphone users with public health researchers during the COVID-19 pandemic. Second, it examines a recent debate about the ethical responsibilities of companies that collect, process and share user-generated data, drawing implications for the SSA context. Finally, since this is a relatively understudied subject, we point out some areas where future conceptual and empirical work could contribute to the development of relevant ethics guidance and regulatory governance in SSA.