Paper short abstract:

This paper explores how the African Cancer Registry Network tries to incorporate questions of knowledge, data justice and equity in global cancer data relations and attempts to redress global inequalities by creating pan-African solidarities, local expertise and networked knowledge communities.

Paper long abstract:

Cancer is perhaps one of the most data heavy contemporary disease categories. Dependent on vast quantities of data for treatment paths, infrastructure building and even aetiological causes, extensive amounts of cancer data are produced by most countries across this world. This data, which gives information such as the top cancers in a country, forms the backbone of contemporary cancer policies. Recognising the importance of this data, many countries across the world have set up cancer registries, expressly for the purpose of producing cancer data. Much of this data is centrally collected, audited and analysed by the International Agency for Research on Cancer (IARC), a WHO body. Africa, however, has a long history of severe paucity in cancer data. Long not considered a disease of concern on a continent marked by infectious diseases, systems and structures for the production of cancer data on the continent have continuously struggled to stay alive. In this paper, we examine a little known network which is attempting to address the vast cancer data inequity on the continent: the African Cancer Registry Network. Established in 2012 on the ruins of earlier colonial efforts to measure and map cancer in Africa, the AFCRN works on a range of epidemiological surveillance efforts on the continent in partnership with the IARC as well as with Western universities, African governments, cancer charities and the pharmaceutical industry. Besides playing a critical role in the making of the Africa-section of IARC’s famous Global Cancer Maps (GloboCan), the network has also participated in many epidemiological cancer studies that seek to ascertain where best to invest resources and what type of interventions work.

This paper explores how the network tries to incorporate questions of knowledge, data justice and equity in global data relations. Indeed, a certain notion of justice was one of the main rationales for the establishment of the network. Specifically, by creating the network, the founders hoped to give Africans more control over the collection, analysis and use of cancer data from the continent, seeking rebuild data production capacities on the continent through cross-continental collaborations, by foregrounding African registrars and registries capacities and building local expertise. We explore these ethical hopes and how the network’s founders sought to operationalise them through a range of strategies, from training opportunities to creating a sense of community to data sharing protocols. While many of the founders’ efforts have been successful, some old inequalities and injustices have persisted, and new ones have come to the fore. We examine some of these injustices like the persistent lack of funding or the way low-skilled Africa data collectors feels themselves exploited by better educated and connected African medical researchers. In the face of economic, structural and epistemic inequalities in the collection of cancer data in Africa, this paper examines the AFRCN as an attempt to redress these inequalities through the creation of pan-African solidarities, local expertise and networked knowledge communities.