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.

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.

Short abstract:

Cancer epidemiology is rarely neutral in its practice. This paper examines the development, techniques and methods of the network of cancer registries in India, probing its political stakes, asking how it spatialises the disease, and what its mode of data generation obscures and reveals.

Long abstract:

Cancer registration is a scientific endeavour that aims to systematically generate knowledge on the incidence and prevalence of the disease in given populations, establish regional disease burdens, and subsequently undergird health policies that aim to address imbalances in access to care and interventions such as screening. Yet STS scholarship has demonstrated that such epidemiological endeavours are seldom simply the neutral collection and collation of data they are often assumed, be it the inherited logics they employ, or in the construction of disease objects or populations they purport only to study. Data is political. Cancer framed as an ‘epidemic’ secures funding, the rise of fall of individual cancer types allows claims to be made about relative levels of ‘development’ and the successes or failures of political projects. In this paper I analyse the cancer registry system in India, asking how, since its inception in the early 1980s, this network has developed, how the forms of research it undertakes have shifted, what its mode of data generation can reveal and obscure, and how this data is utilised in the spatialisation of cancer risk across the country. Narratives of ‘transition’ describe changes in diet, family structure, lifestyle, demographic makeup, and disease patterns (typically linking the rise particularly of colorectal cancers with a move towards ‘affluent’ lifestyles), yet are belied by the means of data collection and the populations that they cover. In this paper therefore, I examine the stakes of this data collection and the imaginaries and techniques it employs.

Short abstract:

This paper draws attention to the absence of cancer, exploring how negative diagnoses are figured in planning of cancer pathways and patient stories of ‘all-clear’ results. This contributes to thinking about how the anticipation of ‘not cancer’ is mobilised as part of imaginaries of cancer futures.

Long abstract:

National and international policy focus on cancer control has both prolonged life with cancer and altered the temporality of life at risk of cancer (Manderson, 2015, Andersen 2023). While this can foreground the potential presence of cancer, imagining the absence of cancer plays an equally important role in cancer detection initiatives, in that all-clear or indeterminate results create different responsibilities for health services in offering reassurance and closure.

This paper draws attention to the absence of cancer, drawing on two cases which emphasise different moments in the cancer detection journey. First, exploring the beginning of processes of cancer identification, I examine the mobilisation of professional and institutional resources during current efforts in the UK to improve colorectal cancer diagnosis. In exploring efforts to find more cases of cancer, I pay particular attention to how those who are anticipated not to have cancer are figured in planning. Second, looking at the endpoint of cancer detection pathways, I share insights from patients who have received an ‘all-clear’ after passing through novel pathways for vague symptoms.

Contrasting how the ‘absent presence’ of cancer is manifest in both cases, I further thinking on the flows of anticipation (Clarke, 2015) that shape cancer detection efforts, particularly how this relates to the concept of ‘chronic living’ (Heinsen, Wahlberg, Petersen, 2021). Through this I aim to contribute to STS conversations about how imaginaries of futures with and without cancer are mobilised in everyday life.

Short abstract:

In Tanzania, cancer is a lens to observe various scales of epistemic absences. Based on ethnographic data in urban Tanzania, this paper explores epistemic absence by focusing on the experiences of providers, intermediaries, and patients, asking what is at stake when cancer palliation becomes care.

Long abstract:

Today in Tanzania the National Cancer Control Strategy estimates that only 10% of cancer cases reach the referral level and over 80% of these cases arrive in late stages. [Tanzania National Control Strategy estimates]. In this context of palliation as care, cancer becomes a lens to observe various layers of epistemic absences and how they unfold at various scales or social contexts. These absences in Tanzania entail not only the lack of diagnostic and therapeutic technologies and medicines but also extend to gaps in the knowledge and understanding of the roles and experiences of health providers, traditional and spiritual healers. Based on ethnographic data conducted at a national cancer hospital in Dar es Salaam and communities in Bagamoyo, Tanzania in 2021 and 2024, this paper explores epistemic absence by focusing on the experiences of providers, their intermediaries, and patients. We ask, how do health workers, patients, and family members make do, talk about, and experience cancer? How do political, technological, and sociocultural silences surrounding cancer shape what practices count as care, and in turn how do existing care practices inside and outside of biomedical health facilities shape local lexicons and possibilities for cancer prevention and treatment? In what ways is cancer rendered as biomedical, social, and technological? Where and how can cancer be treated in individual bodies, communities, and environments? We seek to transform the study of cancer in Tanzania by centering these epistemic absences, their imaginaries and limitations, asking what is at stake if they are not urgently addressed.

Short abstract:

This presentation discusses problem frames associated with metastatic melanoma and its treatment. We present a range of frames that are used in the literature and evaluate how these frames interact, overlap, or clash to understand skin cancers as a complex societal problem.

Long abstract:

Metastatic melanoma is considered hard to treat and worrisome skin cancer. A limited efficacy of existing therapies for its treatment has motivated researchers in the MELOMANES project to develop an “innovative immunotherapy treatment enhanced by nanoparticles”. Beyond the molecular complexity that needs to be addressed, skin cancers as complex societal problems warrant additional perspectives from health systems, public and environmental health domains as well as lived experiences of patients. Furthermore, the development and purchase of treatments for skin cancers is becoming increasingly expensive, and access to such treatments is far from universally guaranteed. Such aspects of treating skin cancer are often ignored in the biomedical literature alone, despite the usefulness of biomedical interventions being dependent on their distribution, development, pricing, and prevention efforts. In short, the biomedical problematization of and solutions to skin cancers are stealthily intertwined with multiple disciplines and with multiple public health and political economy aspects of treating skin cancers. Using metastatic melanoma as a case study, we investigate a range of problem frames used in the literature (e.g. biomedicine, public health, political economy) and by the experts to describe the problems and the challenges of treating metastatic melanoma. Building upon our engagement as integrated STS researchers in the EC funded project MELOMANES, we explore how these frames can be aligned into a transdisciplinary problem framing of skin cancer treatment that can serve as a framework for reflexive evaluation of innovative treatments aimed at addressing a complex, interrelated societal problem.

Short abstract:

On TikTok, young people with metastatic breast cancer (MBC) chronicle their experiences of living with MBC in ways that transform the genre of the health update, emphasize the need for advocacy and policy change, and document stories which are often excluded from public breast cancer messaging.

Long abstract:

On TikTok, young people with metastatic breast cancer (MBC) chronicle their experiences of living with their disease in videos that explain what is currently happening with their treatment. These “health update” videos keep their followers informed on a range of health-related phenomena.

Young folks with MBC reorient the conventions of social media updates to TikTok, modeling TikTok as a key part of accounting for and processing their experiences of chronic illness, in ways which go beyond representations of MBC. Considering the significance of social media use and storytelling within MBC research (Jacobson 2018, Mazza et al. 2022), I understand the processes of maintaining accounts centered around health updates to be evidence of feminist practices as described by feminist scholarship on women’s and young people’s ways of knowing as patients (Lorde 1979, Ehrenreich and English 1974).

These TikToks act as compelling evidence of the urgent need for advocacy and policy change, especially regarding new and more effective lines of treatment, as well as forms of feminist documentation and accounting of stories which are often excluded from public breast cancer messaging. I examine MBC health updates posted by young people on TikTok, and ask, what are the patterns and trends which characterize MBC update videos? What forms of media accounting (Humphreys 2018) do their creators adopt to not only self-disclose their diagnosis, but to explain its meaning and treatment trajectory? How do young people with MBC use TikTok to transform the genre of the health update?