P. Wenzel Geissler

'He is now like a brother, I can even give him some blood' - Relational ethics and material exchanges in a malaria vaccine 'trial community' in The Gambia

This paper explores social relations within the trial community (staff and volunteers) of a Malaria Vaccine Trial (MVT), implemented by the Medical Research Council (MRC) in The Gambia between 2001 and 2004. It situates ethical concerns with medical research within the everyday life of scientific fieldwork. Based upon discussions with volunteers and staff, we explore processes of mediation between scientific project and study population, and between formal ethics, local ethical debates and everyday practice. We observe that material contact and substantial transactions, notably of blood and medicine, are central to the construction of the MVT. These transactions are guided by a concrete and relational form of ethics, which contrasts with the abstract and vertical formal ethical principles underwriting the scientific study protocol. The success of the MVT owed much to these kinship-like ethics. One possible conclusion from these observations is that research ethics should be understood, not just as a quasi-legal frame but also as an open, searching movement, much in the same way that kinship is not merely a juridical institution and a prescriptive frame of rules, but a network made through relational work. However, this conclusion raises new problems: by contrasting formal, abstract principles to intimate, immediate relations, and economic justice to personal morality, we accept that the order of medical research is moved further out of the public and political, and into the domains of either quasi-legal claims or of private morality. Irrespective of the undeniable importance of clear-cut rules and of good face-to-face relations, a third essential foundation of medical research ethics is the democratically constituted public sphere, including equitable health services, and transparent institutions to facilitate open debate and regulate particular interests. Ultimately, the ethics of global science can rely neither on principles nor trust but requires citizenship and democratic government.

Earth-eating and reinfection with intestinal helminths among pregnant and lactating women in western Kenya

We conducted a longitudinal study among 827 pregnant women in Nyanza Province, western Kenya, to determine the effect of earth‐eating on geohelminth reinfection after treatment. The women were recruited at a gestational age of 14–24u2003weeks (median: 17) and followed up to 6u2003months postpartum. The median age was 23 (range: 14–47) years, the median parity 2 (range: 0–11). After deworming with mebendazole (500u2003mg, single dose) of those found infected at 32u2003weeks gestation, 700 women were uninfected with Ascaris lumbricoides, 670 with Trichuris trichiura and 479 with hookworm. At delivery, 11.2%, 4.6% and 3.8% of these women were reinfected with hookworm, T. trichiura and A. lumbricoides respectively. The reinfection rate for hookworm was 14.8%, for T. trichiura 6.65, and for A. lumbricoides 5.2% at 3u2003months postpartum, and 16.0, 5.9 and 9.4% at 6u2003months postpartum. There was a significant difference in hookworm intensity at delivery between geophagous and non‐geophagous women (Pu2003=u20030.03). Women who ate termite mound earth were more often and more intensely infected with hookworm at delivery than those eating other types of earth (Pu2003=u20030.07 and Pu2003=u20030.02 respectively). There were significant differences in the prevalence of A. lumbricoides between geophagous and non‐geophagous women at 3 (Pu2003=u20030.001) and at 6u2003months postpartum (Pu2003=u20030.001). Women who ate termite mound earth had a higher prevalence of A. lumbricoides, compared with those eating other kinds of earth, at delivery (Pu2003=u20030.02), 3u2003months postpartum (Pu2003=u20030.001) and at 6u2003months postpartum (Pu2003=u20030.001). The intensity of infections with T. trichiura at 6u2003months postpartum was significantly different between geophagous and non‐geophagous women (Pu2003=u20030.005). Our study shows that geophagy is associated with A. lumbricoides reinfection among pregnant and lactating women and that intensities built up more rapidly among geophagous women. Geophagy might be associated with reinfection with hookworm and T. trichiura, although these results were less unequivocal. These findings call for increased emphasis, in antenatal care, on the potential risks of earth‐eating, and for deworming of women after delivery.

The relationship of acceptance or denial of HIV-status to antiretroviral adherence among adult HIV patients in urban Botswana

Adherence to antiretroviral therapy among HIV patients is the most important patient-enabled factor related to virological failure and can lead to drug resistance. It is important to avoid virological failure, especially in resource-limited settings where treatment options are limited and the effects of treatment failure are profound. This qualitative study aimed to identify the psycho-social factors related to adherence behaviour in Gaborone, Botswana, a high prevalence setting in southern Africa. One-to-one, in-depth interviews were conducted with adult antiretroviral patients in the private and public health sectors who had been on antiretroviral therapy for a minimum of 6 months. A grounded theory approach was adopted and patients were selected purposively and theoretical sampling determined the final sample size. Thirty-two patients were interviewed, 22 from the public-sector, the mean age was 9.5 years and 53% were women. We found that acceptance of HIV-status, the ability to avoid internalising stigmatising attitudes and identification of an encouraging confidante were key factors related to good adherence. Encouraging confidantes (including clinicians) and contributed to promoting hope and acceptance of HIV-status, enabling patients to develop a positive therapeutic relationship with their antiretrovirals and make lifestyle changes that promoted adherence. Active participation in a social network and a desire to avoid being thin and visibly identifiable as HIV-positive were also adherence-motivating factors. Conversely, participants who expressed some degree of denial about their HIV-status tended to express emotions associated with depression, and internalised stigma that inhibited the development of a relationship with a confidante. We feel it is important to identify individuals with HIV who are still in some degree of denial about their status and to identify depression among patients on antiretrovirals. This will enable more targeted, individualised support in the management of individuals HIV disease.

Ethics and the ethnography of medical research in Africa

The ethics of medical research have grown as an area of expertise and debate in recent years, with two broad approaches emerging in relation to transnational research: (1) the refinement of guidelines and strengthening of review, processes primarily to protect the right of individual research participants and strengthen interpersonal relations at the micro-level; and (2) considering more centrally, as crucial ethical concerns, the wider interests of whole populations, the functioning of research institutions, the processes of collaboration, and the ethics of inequitable international relations. We see the two areas of debate and action as complementary, and believe that social science conducted in and around transnational medical research environments can bring these two perspectives together in a more ‘situated ethics’ of research. To explore this idea for medical research in Africa, we organized a conference in December 2005 in Kilifi, Kenya. In this introduction we outline the two emerging approaches to medical ethics, summarise each of seven papers selected from the conference for inclusion in this special issue on ethics and ethnography, and finally highlight two areas of lively debate at the conference itself: the appropriateness and value of ethics guidelines and review boards for medical research; and the ethical review of social science research. Together, the papers and debates point to the importance of focusing on the ethics of relationships and on justice in both biomedicine and social science research, and on giving greater voice and visibility to the field staff who often play a crucial and under-supported role in ‘doing ethics’ in the field. They also point to the potential value of social science research on the range of relationships operating at different levels and time scales in medical research, including those surrounding community engagement activities, and the role and functioning of ethics review boards. We conclude by highlighting the ethical priority of capacity strengthening in medical research, social science and research ethics in Africa to ensure that local and national priorities and concerns are considered at both the micro and macro levels.

Effects of iron and multimicronutrient supplementation on geophagy: a two-by-two factorial study among Zambian schoolchildren in Lusaka

Geophagy has been associated with iron deficiency and anaemia, but no causal relationship has been established. To clarify this, we conducted a two-by-two factorial randomised, controlled trial on the effect of iron and multimicronutrient supplementation on geophagy in Zambian schoolchildren in Lusaka, from February to December 2001. Of the 406 children, 212 (52.2%) were girls and the mean (range) age was 10.2 (7-15) years. Geophagy was reported by 302 (74.4%) and more often in girls than in boys (80.2 vs. 67.7%, P = 0.007). The mean (range) daily earth intake was 25.2 (1-200) g. Geophageous children had more often geophageous relatives than non-geophageous children (79.5 vs. 1.9%, P < 0.001). Geophageous children had lower serum ferritin (20.5 vs. 25.0 microg/l, P = 0.032) but not haemoglobin (Hb) (129.2 vs. 130.4 g/l, P = 0.59), than non-geophageous. Among those with Hb < 130 g/l, geophageous children had significantly higher prevalence (53.7 vs. 30.6%, P = 0.024) of Ascaris lumbricoides infection than non-geophageous. The prevalence of geophagy (74.4 to 51.6%) and the intake of earth (25.3 to 15.0 g/day) declined (P = 0.001 and P < 0.001, respectively) among the 220 (54.2%) children followed-up. In bivariate analysis, non-iron supplementation reduced the prevalence of geophagy more than iron supplementation did, but this was not confirmed in the multiple logistic regression analysis. Multimicronutrients had no effect on either geophagy prevalence or earth intake. Geophagy was prevalent and associated with iron deficiency, but iron supplementation had no effects on geophageous behaviour. Geophagy could be a copied behaviour and the association between geophagy and iron deficiency due to impaired iron absorption following earth eating.

ENGAGING COMMUNITIES TO STRENGTHEN RESEARCH ETHICS IN LOW-INCOME SETTINGS: SELECTION AND PERCEPTIONS OF MEMBERS OF A NETWORK OF REPRESENTATIVES IN COASTAL KENYA

There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked to a large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCRs perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential.

AIDS and religious practice in Africa

This volume explores how AIDS is understood, confronted and lived with through religious ideas and practices, and how these, in turn, are reinterpreted and changed by the experience of AIDS. Examining the social production, and productivity, of AIDS - linking bodily and spiritual experiences, and religious, medical, political and economic discourses - the papers counter simplified notions of causal effects of AIDS on religion (or vice versa). Instead, they display peoples resourcefulness in their struggle to move ahead in spite of adversity. This relativises the vision of doom widely associated with the African AIDS epidemic; and it allows to see AIDS, instead of a singular event, as the culmination of a century-long process of changing livelihoods, bodily well-being and spiritual imaginaries.

Field Workers at the Interface

This issue of Developing World Bioethics includes a collection of papers on intermediary staff and volunteers working at the interface between research institutions and researchers, and the communities from which research participants are recruited. ‘Field worker’ – a short hand commonly used in many research settings – refers here to those whose main role is face-to-face engagement with participants, who usually speak the participants’ first language, who are from or live in the study areas, and whose work entails moving around the study areas or health facilities. Field workers can be differentiated from medical or scientific staff for whom only part of their duties entail direct interaction with participants, and who are primarily based in the research institution or the clinic. In international research settings field workers are variously called research assistants, community interviewers, data collectors, fieldworkers, field assistants, assessors, follow up staff or defaulter tracers. Although some may hold first degrees or certificates, many are secondary school leavers without higher education opportunity; overall they are formally less qualified than clinical and research staff. Instead, field workers often have extensive informal training and experience from earlier volunteering and jobs in research centres or the NGO sector, which often require similar tasks and expertise.1 Their roles may include communicating about studies and mobilisation and follow-up of participants, conducting interviews, and carrying out relatively simple biomedical data-collection procedures such as taking temperatures and collecting finger prick blood samples.

The effect of iron and multi-micronutrient supplementation on Ascaris lumbricoides reinfection among Zambian schoolchildren

A randomised, placebo-controlled, double-blind trial was conducted among schoolchildren in Chawama, Lusaka, Zambia, to determine the effect of iron and multi-micronutrients on reinfection with Ascaris lumbricoides. Supplementation was given on every school day for 10 months. Baseline A. lumbricoides prevalence and geometric mean intensity among positives were 43.4% and 2526 eggs per gram (epg) faeces, respectively. Serum ferritin <12microg/l was associated with higher egg counts than serum ferritin >or=12microg/l (4728 vs. 2036epg, P=0.033). Of 406 children recruited, 378 (93.1%) were examined at baseline and all infected children were treated and cure ascertained. The mean number of tablets taken per week was 2.5, giving 50% compliance. At six months 283 (74.9%) children complied, and reinfection intensities in those receiving iron were lower than in those receiving placebo (1600 vs. 3085epg, P=0.056). This effect disappeared at 10 months, where 215 (56.9%) complied. Iron had no effect on A. lumbricoides reinfection rates and multi-micronutrients had no effect on reinfection rates or intensities. Iron appears to affect reinfection intensity with A. lumbricoides, but further investigations are required to confirm this effect and elucidate the mechanisms involved.

A home for science: The life and times of Tropical and Polar field stations

A ‘halfway house’ between the generic, purified space of the laboratory and the varied and particular spaces of the field, the field station is a controlled yet uncontained setting from which nature can be accessed and anchored. As living quarters for visiting scientists, field stations are also enmeshed in the routine and rhythms of everyday domestic life, and in longer cycles of habitation, wear, and repair. This introduction considers the empirical and conceptual significance of Polar and Tropical field stations as homes for scientific work and scientific lives. The field station’s extra-territorial yet intimate character affects the credibility and circulation of knowledge along science’s frontiers. The challenge of making a home in the (non-temperate) field and the mundane experiences of expatriation and appropriation establish particular political dynamics of knowledge-making in these locations. They bring into focus the imaginaries of nature and science that drive transnational research and put into relief the aesthetic and affective dimensions of work and life in these distant homes for science. All these themes are pursued and amplified in a different medium by the artists who contributed to our research and are also featured in this special issue.