EASA, 2008: EASA08: Experiencing diversity and mutuality
Ljubljana, 26/08/2008 – 29/08/2008
Rethinking the body: biotechnology and sociality
Date and Start Time 28 Aug, 2008 at 09:00
Body practices and sociality itself can be deeply affected by biotechnology. But are they? How and for whom? We invite researchers to explore critically the bodily and social consequences of diagnostic technology with an eye to differences in access and life conditions.
The experience, perception and practice of the body can be deeply affected by biotechnology, as much recent research has shown. Sociality itself may take on new forms based on diagnostic, therapeutic, and rehabilitative technology. But does it? And for whom? In this panel we invite researchers working in a variety of settings in the Global North and South to explore the bodily and social consequences of biotechnology. The main focus is on diagnostic technology: genetic testing, antenatal screening, tests for the whole range of infectious and non-communicable diseases, as well as measurements of health status through weight, BMI, and standardized scales.. To what extent is authoritative knowledge from such mechanisms incorporated and what are the dynamic processes through which it comes to make a difference...or not...for bodies, selves, subjectivities, identities, and sociality? We invite papers that highlight processes of transformation, resistance and also the gaps between technology, identity or sociality and the body.We also encourage a comparative perspective that considers inequalities in access and differences in life conditions.
"Checking the askaries (guards) of my body": testing for HIV and living with CD4 counts and viral loads in Uganda
With HIV and its diagnostic technology came new forms of socialities in Uganda during the 80s and 90s. Positive people attempted in various ways to cope with the uncertainties of a certain death. Some joined self-help groups based on open and "positive living". Others chose careful ways of living and loving with shared but unsaid knowledge of their HIV status. Around 2005 Antiretroviral treatment ART became widely available in Uganda and many people have since then returned to lives with hopes and plans for the future and social relationships. Their new life has, however, also brought a new range of uncertainties and vulnerabilities, stemming from the certainty with which the diagnostic technologies of monitoring antiretroviral treatment proclaim the status of a person's life. People now talk about their bodies, their general well-being and their futures in terms of viral loads and CD4 counts which they carefully monitor, rejoice over or worry about. They no longer think of themselves as heading towards a certain death, but as being on a path of uncertain survival. The paper is based on a study on Ugandans living on ART carried out by a team of researchers from Ugandan and Denmark from 2005-2007. In addition we draw upon our long-term experience with HIV/AIDS in Uganda.
'My baby is killed when I breastfeed': challenges of selves and sociality in a context of mother to child transmission of HIV in East Africa
The paper focuses on the adverse effects on subjectivities and sociality instigated by 'mother to child transmission of HIV' (PMTCT) programmes that are currently being launched globally to prevent infants from becoming HIV infected during pregnancy, birth and breastfeeding. With the 'opt out' approach increasingly implemented in HIV testing, vast numbers of HIV positive mothers today live with a known HIV+ status without an experienced ability to prevent the virus from spreading to their babies. None of the infant feeding options promoted through the programs - exclusive breastfeeding and exclusive replacement feeding - emerge as realistic alternatives for the large majority of HIV positive women; only a small minority can afford infant formula products, and exclusive breastfeeding has in many PMTCT programs increasingly emerged as the feeding option of poor women who have to breastfeed and 'let their babies die', as informants put it. Cherished moments of nurture and warmth are transformed to scenarios where mothers who hate their bodies, sometimes to the point of throwing up, breastfeed their infants with a sense of feeding them a poisonous liquid. The paper discusses the frightful alterations in perceptions of body and self produced through PMTCT programs, transformations that generate inconceivable suffering in a most vulnerable group, and simultaneously threaten vital gains in global breastfeeding promotion. The material was collected through interviews with HIV positive mothers and nurse counsellors in Ethiopia and Tanzania between 2004-2006. The methodological backdrop is five years of ethnographic fieldwork in East Africa.
Embodied biographies of heritable breast cancer risk: (re)making the female body amidst medical, religious and social discourses
This paper explores the implications of cultural articulations of heritable disease and predictive genetics, in the case of breast cancer, and the extent to which authoritative knowledge and institutional practices necessarily impose 'novel' ways of thinking about the female body. Drawing on the particularities of the ethnographic context of Northern Greece, in a rural area and among a so-called socio-economically disadvantaged population, I intend to show how developments in the field of breast cancer prevention and prediction are interwoven with the challenges and possibilities of the modernization and secularization processes. Notions of 'control' of or 'protection' from 'inherited suffering' are put to work in the medical and religious domains, through a renewed repertoire on pre-existing meaning-systems that highlights often contrasting aspects of collectivity and individuality and renders the individual/family body a contested ground. For women with high-risk family history of breast cancer, the moral and social prerequisites of these modes of embodiment are not always readily accepted or easily fulfilled. An understanding of embodied breast cancer risk as a family heritage, where biology and a person's social biography meet, integrates the potential of both suffering and power for the female subject but also the possibility of subversion.
Living and working in spite of antiretroviral therapies: HIV between control and resistance
Biomedical discourse has progressively come to redefine HIV as a chronic disease, and HIV-positive individuals as chronic patients. Antiretroviral therapies work as a clinical device to control and "chronicize" the pathology. Monthly blood tests, CD4+ T cell counts and oscillations in viral load indicate the stage of infection, determinate treatment, and reveal patients' adherence to therapies, ultimately redefining individuals as mere clinical data. Antiretroviral therapies, however, are extremely invasive: their posology shatters the individual's local world and forces a redefinition of the self, of one's ossibilities and priorities, thus greatly influencing drug consumption and adherence to treatment. In this sense we may speak of local strategies of resistance or, as I will suggest, of local 'rituals of resistance' which are performed by HIV-positive individuals in the attempt to negotiate their role of patients within the limits of the biomedical discourse.
Drawing upon fieldwork research conducted in Milan, Italy, in 2007 and 2008, I intend to explore the sociality of antiretroviral drugs, from their prescription to their consumption, in the attempt to show how HIV emerges as a culturally constructed experience through a specific use of biomedical technologies. I will focus on the case study of Italian construction workers as they are engaged in a constant and strategic process of negotiation of their adherence to therapy, which is influenced by the importance and need of "being able to go to work", as well as shaped by the need to "feel good and strong when going to work", as many patients have claimed. HIV will then be analyzed as a social construction, as what originates from the interplay of biomedical categories and the more intimate meanings that patients attach to the ideas of "work", "strength", "energy" and "health".
Therapy adherence will ultimately shed light on local forms of social suffering.
Sonographic images of anomalous fetal bodies: tracing cultural mediations
On the basis of ethnographic fieldwork carried out in Vietnam's capital Hanoi from 2003 to 2006, I explore how pregnant women and their health care providers interpret 3D scanning images of children-to-be. I focus particularly on images of fetuses that are medically graded as 'abnormal', tracing the meanings that people attach to visual representations of anomalous fetal bodies and examining the complex ways in which perceptions of such sonographic images are mediated by other images: by mass mediated representations of bodies grossly disfigured by 'Agent Orange', the highly toxic herbicide dioxin sprayed by U.S. military during the second Indochina war, and by glossy commercial advertisements for baby and child products aimed at an expanding group of middle class consumers. I show how health care providers and pregnant women act on the medical 'facts' produced by sonographies through imaginative engagements with fantasy worlds conjured by such powerful mass mediated representations, and discuss the implications of such engagements between 'fact' and 'fantasy' for anthropological apprehension of the social impact of new biomedical technologies.
The 'bio-social' dynamics of breast cancer genetics: comparisons between the UK and Cuba
It is becoming increasingly clear that there are important differences in the space and shape of the 'biosocialities' in and between national and trans-national arenas. These differences relate, in part, to the scope (and limits) of technological intervention, the organisation of state health care or research resources, the presence (or absence) of a culture of health care activism and the specific history and character citizenship. Drawing from past and current research in the UK and Cuba this paper presents a comparative perspective on the dynamics between biology and sociality in relation to the field of 'breast cancer genetics'. Focusing on the pursuit, use and application of genetic knowledge and technology linked to breast cancer, the paper critically examines the continuities and discontinuities between these two national contexts. It shows how understanding these differences have consequences for theorizing and conceptualizing the meeting point between genomics, identity and citizenship.
Transplant anxieties: discourses about bone marrow/haematopoietic stem cell transplantation
This research examines discourses and practises in the Bone Marrow Transplant (BMT) network in South Africa, as observed in Cape Town: South African Bone Marrow Registry (SABMR), Sunflower Fund (SFF) and transplant centres, analysed in concert with accounts from patients, donors, and family members who interact with this network. A prominent discourse is a suite of assertions articulated in the BMT network:
1) Genetically inherited HLA (Human Leukocyte Antigen) types appear in certain ethnic populations more commonly than others.
2) Patients who cannot find an HLA match for BMT in their family are most likely to find a match in the same ethnic group.
3) Ethnic groups not well-represented on the SABMR database of HLA-typed volunteer donors lead to patients of those backgrounds having little chance of finding a match.
4) SABMR and SFF are working to increase the number so that all ethnic groups are represented on the SABMR given South Africa's unique and diverse gene pool.
This reflects a complex interweaving of biological materiality, ethnicity, culture, mortality, health resource rationing, South African nationhood, and the limits of bodily integrity and necessitates engagement with several issues: health inequalities, human rights, and the prioritisation of first and third world medicine, the meanings of race, culture, ethnicity, and nationhood in a diverse South Africa (especially given its history as a highly racialised society and its contemporary political agenda of transformation), conceptions of donor shortage, and the imperative of treatment vis-à-vis transplant technology and socio-genetic matching.