Paper short abstract:

There has been an increase in experimental trials conducted into public health interventions across South Asia. This paper draws on case studies to explore issues around their conduct and how institutions collaborate to run these.

Paper long abstract:

Drawing on material from a project spanning India, Nepal and Sri Lanka this paper explores a number of collaborations around the conduct of experimental public health interventions. These are run by assemblages of organisations (universities, hospitals, donor agencies, local non-governmental institutions, research institutes, and government clinics for example) and we explore the tensions in these institutional relationships, as a balance between the need to generate both evidence and provide services is negotiated. We propose that health development programmes increasingly structure their interventions with the generation of diverse forms of evidence in mind. We ask the questions: What kind of evidence is necessary? What networks are developed to undertake this? A range of case studies will be presented as we develop our argument.

Paper short abstract:

This paper is about the uncertainties raised by a period of conflict on the production of scientific data in a clinical trial conducted in Abidjan (Ivory Coast), on early antiretroviral treatment of HIV-1 infected people.

Paper long abstract:

A clinical trial is a hybrid system, a scientific experiment mainly grounded in clinical practices. It therefore confers a specific status to the people who are enrolled in it, at once subjects of the experimentation and patients for the medical staff, and can be considered as an "experiment without borders" (to quote Sheila Jasanoff), depending on the wider context in which it is located. Objectifying an organism is a very complex process, which necessitate people, time, instrument, follow-up, papers, and traces. It is an even more complex, and an even more uncertain process when it comes to a human being, possessing its own life and its own history, belonging to different social worlds. In this paper, I want to explore the way data are produced in a clinical trial conducted in Abidjan on early antiretroviral treatment of HIV-1 infected people. How can we ascertain that people respect the trial protocol once they are at home? And, to quote Isabelle Stengers, how can we ascertain that an individual constitute a good "scientific object"? These questions are even more salient when we consider the events that punctuated life in Ivory Coast during the year 2011, and which had big repercussions on people lives, but also, and inevitably, on the progress of the trial and the data produced. How scientists manage uncertainties in a period of crisis? And what does it learn about the way science construct and define bodies and people?

Paper short abstract:

Articulating patients’ views on the causation of “their” tuberculosis with biomedical research trying to get to grips with uneasy disease mechanisms, my paper seeks to dwell on the uncertainties and indecidabilities (indécidables) surrounding the matters of disease causation.

Paper long abstract:

Based on ethnographic research in clinical facilities and tuberculosis prevention centers in France and Germany, my paper will analyse the role(s) the mycobacterium tuberculosis (Mtb) is said to play in the aetiology of this infectious disease from patients as well as scientific points of view. Since the discovery of the germ by Robert Koch in 1882, Mtb has become taken for granted as the main agent of disease causation, and tuberculosis is treated today through a very standardized six-month treatment protocol combining four antibiotics worldwide. Tuberculosis has thus been transformed through pharmaceutical intervention on a specific germ from a chronic infection to a "treatable" affection, which is seen as being largely "controlled" in the North, setting it very low on a clinical and public health agenda. Besides this taken for granted bacteriological "nature" of disease and the unquestioned biomedical treatment response, however, tuberculosis continues to be portrayed in biomedicine as highly complex infection surrounded by much "empiricism" on the one hand, as well as "social disease", "social pathology", or "disease of poverty" in public health on the other. Articulating patients' views on the causation of "their" tuberculosis with biomedical research trying to get to grips with uneasy disease mechanisms, my paper seeks to dwell on the uncertainties and indecidabilities (indécidables) surrounding the matters of disease causation.

Paper short abstract:

In this paper I propose to analyze the multiple logics underlying the signature of the agreement between the clinical trial as an institution and the HIV-AIDS patients recruited. Instead of deconstructing these logics and experiences in insisting on what seems to oppose them, I want to highlight how different actors play a role in the setting up of the Ethical process and in doing so articulate matter of facts and concerns. The ethical procedures appear as a fiction opening the way for the association to happen.

Paper long abstract:

To adopt a realistic attitude would be to recognize that in the encounter of researchers and subjects within clinical trials, there is no strict opposition of matters of fact and concern, but rather an articulation of the two. This articulation (or association) is based on the staging of an agreement grounded on the multiplicity and economy of registers _ fact, concern. Even so the terms of the agreement seem to give precedence to fact, the different parties do not ignored concern of both parties. But the signature of the agreement is not a place of revelation of an absolute truth neither about why parties do sign nor about what they "carry"; it is a place of staging of the trial where actors accept to collaborate knowing that while signing they both have other "matter of concerns". We will discuss this issue from the experience of subjects enrolled in a clinical trial in Ivory Coast looking at early antiretroviral treatment against HIV and AIDS. Analyzing the conditions and experiences of inclusion of different patient-subjects, I propose to discuss the staging of this agreement and its consequences on what is the ethical protocol within clinical trials.

Paper short abstract:

Government discourse emphasises individuals' responsibility for healthy eating and corporations' responsibility in food production and promotion. But for effective, meaningful public health policy, it is essential to understand how actors in the food system construct and delineate responsibility.

Paper long abstract:

The locus of responsibility for dietary behaviour and ensuing health outcomes is uncertain, although systemic factors beyond individual control are significant. Indeed, there is an ideological tension in the assignment of such responsibility: to what degree it lies with individuals, with the state and its proxies, or with powerful commercial interests whose raison d'être is to profit from food sales. Meanwhile, a 'behavioural justice' perspective suggests that individuals cannot be held entirely responsible for their health behaviour unless they have the resources - economic and otherwise - to make fully informed choices. As such, expecting individuals to take sole responsibility for their food choices is to ignore the role in diet-related health outcomes of structural and relational factors. This paper elucidates the implicit and explicit portrayal and expectations of responsibility for healthy eating in industry and government discourse. Such discourse is contextualised in and contrasted with public health policy and evidence from the media and food outlets; the analysis also accounts for the uncertain line between state and corporate responsibility, and individual autonomy. The common usage of 'responsibility' in public health discourse belies its subjective and intangible nature. This research emphasises the importance of consensus on the meaning and loci of responsibility, and questions whether it is proportionally delineated between different actors in the food system.

Paper short abstract:

This paper aims to show how un/certainty is constantly questioned when parents are expecting a baby following a stillbirth. Scientific and public health authorities as well as medical technologies aiming at preventing uncertainties make unsuspected effects on those experiencing this surveillance.

Paper long abstract:

In the actual quest of postmortality, a stillbirth appears as a failure for parents as well as for both scientific and public health authorities. In this context, time for mourning is, at best, a « rite de passage » to another pregnancy. This expectation stands against the state of horror, the lost of all references and the possibility of a double failure (e.g.: the breaking up of the couple, the suicide of the parents, etc.). To help the begrieved parents through this period, health authorities propose nothing but the results of autopsy, genetic tests, or psychological assistance. The parents are even introduces to the specialists who will take charge of their next pregnancy. In the meantime the mother has to convince herself that she is not lethal, that she can give birth to a healthy child. Should she become pregnant these thoughts will continue to inhabit her. The responses of the health authorities focus on ultrasound scan to directly monitor the baby, cumulating data. However, these information's can never result in a complete picture, leaving room for interpretations and doubts, hence uncertainty. In spite of such monitoring and data gathering no one seem to be able to account for the continuing high rate of unexplained cases of stillbirth. My analysis is based on a long term research on data produced by both the medical board and the public health surveillance. To these must be added data gathered regularly within the website created by a group of parents having experienced such lost.

Paper short abstract:

Les bouleversements de la maternité, les dilemmes contraignants et les sentiments contradictoires occasionnés par la médicalisation extrême de la reproduction (plus spécialement dans le cas du don d’ovocytes).

Paper long abstract:

L'infertilité ne constituant plus un problème social mais se définissant plutôt comme une condition biologique susceptible à des solutions médicales, les couples infertiles se voient obligés d'envisager les biotechnologies en tant que «fait accompli». Dans le cadre de cette «hégémonie biomédicale», les agents sociaux ne peuvent que se soumettre à l'autorité du savoir médical afin de réussir la procréation tellement désirée et assurer leur conformité aux prescriptions de la normalité sociale.

Néanmoins, les nouvelles technologies de reproduction s'avèrent bien plus qu'un instrument neutre et objectif au service de cette vocation; elles font instituer à la fois des relations inégales entre le corps « souffrant » et les agents médicaux censés à le «guérir», remuer des dilemmes et des craintes, soulever des ruptures, des fissures et des bouleversements.

Les données ethnographiques concernant des femmes qui vivent à Athènes et recourent au don d'ovocytes vont décrypter les sentiments contradictoires - angoisse, incertitude et dépendance, mais aussi confiance et espoir - éprouvés par ces femmes à l'égard du pouvoir biomédical, qui, malgré tout, finit par hyper-médicaliser leur réalité personnelle/familiale. Mon enquête va démontrer comment ces femmes confrontent des dilemmes contraignants: soit rester stigmatisées comme stériles, soit mettre au monde «l'enfant de leur mari» ; quel sens donnent-elles aux déplacements importants dans les représentations de la maternité ; révéler, en dernière instance, si elles restent passives devant l'autorité médicale ou, par contre, si elles arrivent, par stratégies diverses, à contourner les biotechnologies et reprendre la maîtrise de leur corps et de leur vie.

Paper short abstract:

For some pregnant couples, the routine screening for Downs Syndrome takes a disruptive turn when they receive a 'high-risk' result. The expected normal pregnancy is questioned. This paper will discuss how professionals and couples negotiate and make sense of this disruption.

Paper long abstract:

In Denmark, ultrasound screening for Down's syndrome is widely perceived as an - often enjoyable - routine pregnancy examination. For app. 5 % of all pregnant couples, this routine takes a disruptive turn when they receive a test result in the 'high-risk' end. They are subsequently offered invasive diagnostic testing (CVS) which involves a risk of miscarriage. Achieving certainty (of normal chromosomes) therefore involves a risk (of miscarriage). The majority decides to take the CVS and in most cases, the CVS will show normal chromosomes. Being categorized as high-risk calls into question the expected normal pregnancy and the imagined future parenthood. It generates anxiety, uncertainty and sadness. Based on 4 months of fieldwork at an obstetric ultrasound clinic and in-dept interviews with health-care professionals and 'high-risk' couples, this paper will show how professionals and couples negotiate and make sense of this disruption. Preliminary analyses indicate how doctors and sonographers work to frame the high-risk category and the CVS as a serious and uncertain situation, but also one of hope. Through their interaction with high-risk couples, doctors and sonographers negotiate, explain, tone down and elaborate on information in order to make the situation manageable for the couples. Couples use medical information and personal experience to negotiate and make sense of a process characterised by waiting and hoping. However, obtaining medical certainty - normal chromosomes - does not necessarily re-establish the couples' trust in normal pregnancy and future parenthood. This paper will reflect on how the 'high-risk' category generates uncertainties to which there are no medical answers.