Paper short abstract:

In this paper, we comparatively examine how in the context of cancer genetics and technological innovations for the diagnosis and treatment of cancer in Brazil old inequalities in accessing prevention, diagnosis and treatment persist and intersect with emerging new inequalities.

Paper long abstract:

While there are now studies in the UK context examining how biomedical innovations are bringing about transformations in cancer patienthood (Kerr and Cunningham Burley 2015), how they are unevenly integrated across different fields of medical research and clinical practice and in the co-ordination of care giving (Bourret et al 2011, Day et al 2017, Kerr et al 2019), we know much less about these dynamics in the low income and emerging economies in the Global South. In this paper, we comparatively examine two related fields in cancer research and health care in Brazil; cancer genetics and technological innovations for the diagnosis and treatment of cancer. Based on an ethnographic research carried out in public and private cancer or cancer genetic centers in the north east and south east of the country we examine how in this context old inequalities in accessing prevention, diagnosis and treatment persist and intersect with emerging new inequalities. We argue that this is a situation that both reflects and informs how biomedical innovations are being incorporated into the Brazilian health system. We pay particular attention to how in Brazil judicialisation has emerged has emerged as a response to inequities in accessing cancer health resources whilst also posing an ethical challenge to care giving. We also examine how stratified patienthood in this context is less a product of global efforts to 'personalise' medicine and more an outcome of dynamic, often disjunctured social relations between the clinic, research and care.

Paper short abstract:

This study draws from findings of an ongoing long-term community-based participatory study in low-income areas of Argentina with the goal of providing insights into the role played by social determinants of health in cancer inequity during the first phases of the continuum of cancer control.

Paper long abstract:

Latin America has almost twice the overall cancer mortality than global north countries, and a greater proportion of the burden of morbidity, with inequities associated with this cancer burden (IARC/WHO, 2008). Epidemiological data show that this panorama also occurs in Argentina, with a fragmented health infrastructure, limited health-care coverage, insufficient funding and human resources, heterogeneity in the distribution of them and insufficient implementation of cancer registries and national cancer plans (Lancet Oncology, 2015: 1405). Even when most of the determinants of health are outside the health-care sector, its role in tackling health inequities is widely recognized (Cohen & Marshal, 2017). However, the role played by the first level of attention turned out to be an important determinant for explaining this gap, especially since it is much more easily modified than distal determinants, due to the fact that there are cancers that diagnosed in time are either preventable, such as cervical cancer, or treatable and curable if detected in early stages, such as breast cancer (IARC/WHO, 2008). This study draws from findings of an ongoing long-term community-based participatory study anchor in low-income rural and peri-urban areas of Argentina, with the goal of providing insights into the role played by social determinants of health in cancer inequity during the first phases of the continuum of cancer control. It is based on a collaborative design oriented to equity; organized in a collaborative format; and work with communities. The strategy combined specific forms of inquiry, mainly ethnography and other qualitative methods.

Paper short abstract:

This paper focuses on the interplay between cancer risk and care and notions of shortage, need and rights that are associated with economic crisis in Greece. It draws on this ethnographic case to consider attributions of locale and the global in the moral complexes that frame responses to cancer.

Paper long abstract:

Taking a lead from a recent edited volume on the anthropologies of cancer (Mathews, Burke and Kampriani, 2015), this paper considers responses to cancer and cancer risk through a lens of how inequality, socio-political ideologies and their ethical undercurrents are linked to conceptions of bodily disorder and other risks in life. Starting with insights from ethnographic research at the dawn of the Greek crisis, I go on to reflect on different moments and responses to cancer and cancer risk over the past decade. Even though Greece has retained its status as high-income economy in the World Bank country classification index, public health accounts have alerted to the implications of austerity for the health status of the population and the shortcomings of health structures, including cancer care. The parallel reading of emerging narratives that speak of a physical, embodied crisis and the national crisis, pinpoints to the ways in which the uncertainties associated with the sovereign debt crisis and the uncertainties that pervade cancer come to provide contexts for each other. In this way, the specific ethnographic domain serves for tracing the interplay between shortage, need and rights and considering the various attributions of locale and the global in the moral complexes that frame responses to cancer in situated cultural environments.

Paper short abstract:

This paper maps cervical cancer prevention advocacy in Indonesia, highlighting the leadership and resilience of the key community-based groups involved, limitations of advocacy focused only on biomedical solutions, and the potential for an intersectional framework to inform advocacy efforts.

Paper long abstract:

Indonesia has among the highest cervical cancer mortality rates in the world; each day 26 women die from and 58 women are diagnosed with cervical cancer in the country (KICKS, 2017). The absence of a national screening program means that Indonesian women are typically diagnosed at more advanced stages of cervical cancer, for which treatment is more invasive and expensive, and subsequently their chances of survival are lower. The burden on women affected by cervical cancer, their families and communities, and Indonesia's under-resourced health system is immense. Based on findings from a current four year study, this paper maps the leadership roles of community-based organisations and their contributions in advocating for cervical cancer prevention in Indonesia. It highlights the progress and resilience of these groups in raising the profile of cervical cancer through a range of media, and the crucial gaps they identify and fill in the government response. It identifies areas for improvement, including the narrow focus on biomedical solutions to cancer prevention, and the assumptions of a high degree of sexual and reproductive health literacy, reproductive agency and access to health services among women who are the targets of information campaigns. The paper explores the possibilities of utilising an intersectional advocacy framework to guide cervical cancer prevention, which would explicitly engage with the social causes of cervical cancer, including gender and socioeconomic inequalities, and health system deficits. The paper advances our understanding of the roles and impact of non-governmental actors in the global fight against cancer.

Paper short abstract:

I explore the patterns of resilience of women with breast cancer in Southern Italy, an area that can be considered a 'South within the North'. The illness is often experienced as one difficulty among many in their lives, and family, community and religion are among the resources mobilised to cope.

Paper long abstract:

Italy is characterised by structural inequalities between an industrial and relatively affluent north and a more economically fragile south. These inequalities extend to the domain of health and healthcare, and experiences of cancer can be significantly different between the north and the south of Italy. Southern Italy is a perfect context to explore the 'Souths within the North' and to analyse how contradictions within more economically developed areas reflect also in illness experiences. Using interviews conducted with southern Italian women with breast cancer, I explore local patterns of resilience within the experiences of the patients and show how these patterns are defined by the social and cultural resources that the women interviewed can access in the context in which they live. Many of the interviewees described their illness experience as one difficulty within a larger life story characterised by problems and obstacles, a perspective that in some cases helped relativise the impact of the illness and of the adjustments they needed to make in their lives. The capacity to cope with the illness emerges, explicitly or implicitly, as a key resource to manage the illness in a context characterised by a health-care system that, while universalistic and advanced, is often considered unreliable. Religion and support from family and the larger community are further important resources that the women were able to recur to in order to cope with and give meaning to their illness.

Paper short abstract:

In this presentation, we explore the experiences of cancer patients living in economic and social precarity in France. We focus on the inequities in access to health care and conceptualizations of cancer among these vulnerable populations residing in a high-resource country.

Paper long abstract:

In this presentation, we explore the experiences of cancer patients living in economic and social precarity in France. We focus on the inequities in access to health care among these vulnerable populations residing in a high-resource country with a national health system. In addition, we present the results of ethnographic research which illustrate the lived experience of cancer from the perspective of patients in conditions of marginality, such as undocumented immigrants. We draw on a four-year study of West African breast cancer patients under treatment in Paris public hospitals, and an ongoing study of health insurance coverage for undocumented immigrants in the cities of Paris and Bordeaux, to identify the constraints confronted by low-income cancer patients and the creative strategies mobilized to obtain support from clinicians, social workers, interpreters, kin, and grassroots organizations. We examine how structurally vulnerable patients navigate bureaucracies, institutional conventions, and diverse discourses of risk as they confront a cancer diagnosis and assess the merits of treatment options presented to them. Decisions regarding whether or not to begin biomedical treatment, such as surgery or chemotherapy, to continue with treatment, or to seek alternative remedies such as ritual therapies involve working through complex conceptualizations of cancer as a stigmatized disease category, the subjective experience of cancer for the patient, and the collective disruption to transnational family networks.

Paper short abstract:

This paper investigates the category of 'hard-to-reach' through relevant literature in cancer prevention and in health research in the UK. We argue that conceptualising people as 'hard-to-reach' risks contributing to long-standing inequalities in cancer research and care.

Paper long abstract:

Within UK public health initiatives researchers and policymakers constantly attempt to define and understand different patient profiles based on the ways in which eligible users engage with available services or do not; some of the most elusive populations are described as hard-to-reach.

This seemingly homogenising catch-all category - hard-to-reach - has been used to outline people who evade cancer prevention efforts (as described in academic literature) because they are: "ill informed", "not interested", or "facing barriers," all of which ostensibly prevent them from engaging with the discourses promoted by available services.

Through exploratory fieldwork on the themes of cancer prevention, risk, and care with 100+ people from so-called hard-to-reach populations including: those affected by physical disabilities; mental health conditions; people 64+; people in disparate rural areas; rough sleepers; Gipsy Roma Travellers; recovering addicts; and migrants; we have set out to ethnographically examine the category of hard-to-reach in a single and vastly diverse English region.

In addition to tracing this category through relevant literature in cancer prevention and the political effects of othering in health research in the UK, we will present an ethnographic overview of the groups within the region, focusing on the ways that different hard-to-reach communities conceive of 'care' and 'risk'. We argue that conceptualising people as "hard-to-reach" risks conflation of the diverse dynamics of social exclusion with epistemic opacity, potentially contributing to long-standing

inequalities in cancer research and care.

Paper short abstract:

How are we living with cancer-as-potential? We suggest that contemporary cancer disease control efforts in Denmark, focusing on early diagnosis and cancer-as-potential, is increasingly colonizing everyday life, rendering both subjectivity and embodied sensations as always more or less cancerous.

Paper long abstract:

What does the contemporary cancer challenge look like from 'the other side of the cancer divide' where survival rates are higher and healthcare is accessible to all? In this paper, we ask questions not of avoidable mortality, but rather of how we live while attempting to avoid mortality. The Global North has for the past decade witnessed a radical (re-)emphasis on 'early diagnosis' as a means to control cancer disease. In this paper, we suggest that contemporary forms of cancer disease control in the welfare-state of Denmark renders a shift in biomedical attention; a shift from prevention to prediction, and a shift from identifying the cancerous body to one that focus on identifying the cancerous subject. Biotechnological and epidemiological developments feed into diagnostic imaginaries where biographical details, behaviors and sensorial experiences are transformed into potential medical signs. This shift represents a vast expansion in what are considered medical signs, as well as new ways of rendering these signs actionable (e.g. algorithms, cancer risk prediction). We suggest that focus on 'early diagnosis' craft social, moral and sensorial spaces of dissonance, with an increasing dissonance between the medical signs produced within the institutional structures that inform health promoters, and everyday forms of bodily experience and moral values that direct individual health practices. Overall, this has social and affective implications and challenge future healthcare system regulations and prioritizations. The paper is based on several years of working in the field of early diagnosis and ethnographic fieldworks among Danish citizens and health professionals.

Paper short abstract:

The paper describes the relationships between patients and medical staff in a cancer ward, in order to identify the practices of care. The ethnographic analysis illuminates the gaps, that are created within the biomedical system, gaps within which these practices of care can rise.

Paper long abstract:

The topic of cancer has always been complicated. As Lochlann (2013) notes, cancer is an interconnected relationship that draws on the economic, sentimental, medical, personal, ethical, institutional and the statistical. Cancer in Greece is the third cause of death with 67.401 new cases reported in 2018. The paper is based on 12months ethnographic research carried out in a public anti-cancer hospital in Athens (Greece), including participant observation within a cancer ward and its associated clinic, as well as open-ended interviews with patients, medical practitioners, nurses and several specialists. Deriving from the ethnographic context of this cancer ward, the paper describes the relationships that are developed between the patients and the medical staff in order to identify the meanings, the practices and the politics of care. Since the cancer dehumanizes patients through wounds and sorrow, practices of care not only function as a thick social dynamic that rehumanizes the decomposing bodies and souls, but is further mitigated the social isolation of the disease preventing the patient's social death as social healing. The ethnographic analysis illuminates the gaps, that are created within the biomedical system, gaps within which these practices of care can rise.

Paper short abstract:

Research on the Indonesian health system response to upscaling cervical cancer prevention, screening and treatment has identified a range of issues related to consent and equity, which impact adversely on the efficacy of the cervical cancer response and the rights of women and girls.

Paper long abstract:

Cervical cancer incidence and survival rates are dramatically shaped by economic inequality, with 90% of the women dying from this disease living in low- and middle-income countries. This paper draws on current four-year study in Indonesia, where cervical cancer is now causing the death of 50 women per day (Globocan 2019). One objective of this research is to map the Indonesian health system response to the urgent need for up-scaling cervical cancer prevention, screening and treatment. In mapping the health system response we have identified a quagmire of issues related to informed consent including: the rights of adolescent girls and parents in consenting to HPV vaccination; the consent processes occurring in the context of outreach screening (or screening safaris); and the contested need for husband consent to screening, cryotherapy and radical hysterectomy. The paper also discusses: the difficulties of ensuring equity of access to free HPV vaccination for girls, when school communities have the right to veto the implementation of school-based vaccination program; discrimination in access to screening and services for unmarried women; and differential access to prevention, screening and treatment for women living outside of major urban centres and for the urban poor. The Indonesian health professionals and cancer advocates we have interviewed express a diversity of opinions on consent, equity, efficacy and reproductive rights, yet there is a common thread running through their narratives, which is the explicit assertion that their position is in the best interests of women.