Childhood Vaccination and Society in the Gambia: Public engagement with science and delivery

1. Childhood Vaccination and Society in the Gambia: Public engagement with science and delivery Melissa Leach (IDS, Sussex), James Fairhead (University of Sussex), Mary Small (Gamcotrap), Jackie Cassell (University of London)

2. Broader project • Funded by ESRC Science in Society Research programme • Childhood vaccination as a key issue for exploring changing science-society relations, involving encounters between Rapidly advancing, globalised health technology and technocracy Deeply intimate, personal and social world of childrearing • Britain-West Africa comparison • Gambia: routine vaccination and vaccine research – 2 papers/seminars

3. Fluid Anxieties:Techno-science and the economy of blood in The Gambia

4. Medical research amidst global inequalities • Researcher and subject living in two different worlds (Farmer 2002) • Research world configured by ‘the trial’ • Connectivity with communities and subjects through ‘best practices’ of biomedical ethics focused on the trial – communication, regularised information, ‘informed consent’ • But how do Gambian populations actually encounter and understand research practices and procedures – and interpret what MRC is up to?

5. Gambian views…. • Are of an institution, not particular trials • Are based on MRC’s historical reputation/experience, not shaped through current bioethical practices • Hold that MRC offers good, free treatment to study subjects, but also ‘steals blood’ • ‘Blood-stealing’ ideas sour otherwise good community relations and fieldworker experiences • How should ‘blood-stealing’ be understood and addressed?

6. Broader relevance of study • How the trans-national ordering and economy of medical research is interpreted in a particular social and cultural world • Academic significance to current debates about ‘post-colonial technoscience’ • Critical to sustainability of medical research in Africa: levels of trial participation, political legitimacy • Public engagement with science – towards dialogues which appreciate fundamentally different framings

7. Presentation • Survey findings – how people reflect on MRC engagement • Interpreting ‘blood-stealing’ – popular and academic views of rumour and the occult • Interpreting ‘blood-stealing’ – a different view rooted in Gambian villagers’ understandings of blood and its economy

8. Context and methods • Spirit of translational research – improving communication between researchers and publics • Anthropological approach • PVT as a case study – but paper not about the PVT • Ethnography (March – Oct 2003) - Tambasansang village near Basse in URD - PVT and previous MRC studies • Survey (Oct 2003 – Mar 2004) • 800 mothers in three rural districts of URD (Fulladu, Wuli West and Sandu, within PVT area) (also 800 in WD)

9. Ethnographic methods • Narrative interviews (child health, immunisation and research biographies – 50) • Participant observation in social settings where parents take infants • Group and individual discussions with men, women, elders, healers • Interviews with MRC fieldworkers (8)

10. Survey • Population and sampling: All resident children aged 12-24 months eligible Two-stage stratified sampling process: Enumeration areas (EAs) used for 1993 Census were identified within the chosen districts, separately within URD and WD; 35 enumeration areas in each Division randomly selected; target number of mothers identified in each EA using random walk method (as in EPI surveys) • Interviewer-administered questionnaire (team of 5 fieldworkers) to explore themes emerging from ethnography

11. Questionnaire – embedded questions about MRC in broader perspectives/experiences around child health and immunisation • Mother's social profile (wealth status linked to compound appearance and landlord/tenant status; stage in reproductive life; ethnicity; marital status; access to mobile phone; western/koranic education; occupation; husband's occupation) • Child health biography (conditions since birth; expectations of immunisation; practice and experience around each batch of immunisations) • Experiences and perceptions of different health providers (government infant welfare clinics, Islamic practitioners, local herbalists, participation in MRC studies) • Child’s health card data concerning recorded immunisations and their dates copied where available.

12. Survey findings – PVT participation (tables 10 & 11) • Only 58% of mothers reported that they had been asked to participate in an MRC study (low proportion if the timing and area of our survey corresponded to that for PVT recruitment eligibility). • More educated mothers were less likely to report being invited (39.2% of those with 5 or more years education, as opposed to 60% of those with no education). • Of those invited, 15.3% declined to participate. MRC staff often link refusal to social variables such as ethnicity (e.g. linking high refusal rates to the Serrehuli), education (e.g. linking refusal to 'tradition', adherence to Islamic authority, or ignorance of science), or wealth, but the survey showed no significant association between trial acceptance/refusal and any of these variables.

13. Survey findings – Involvement in decision (table 14) • Despite an informed consent process focusing ultimately on individual mothers (plus wider communication processes), only 44% of women who participated said that they had been involved in the decision (deciding themselves, or jointly with husband); others said their husband, compound head or other senior men had decided. • Of those who refused, 26% said they had been involved. This suggests that where women were involved, the decision was more likely to be positive. • Older women who had had more pregnancies were more likely to be involved than younger women, although education made no significant difference.

14. Survey findings – Views of what study was about (table 15) • 45% of mothers invited to join said they did not know, were not told or had forgotten; 30% said it was for improved child health, and 18% said that it concerned free checking and treatment for their children. • Only 6% mentioned pneumonia or the phrase 'pneumococcal vaccine trial'. • All those who indicated pneumonia or PVT had participated, but otherwise there was no significant difference between the responses of those who had accepted and refused.

15. Survey findings –Views of benefits in having a child registered with MRC (table 13) • 55.4% of those invited to join mentioned good treatment, and a further 25.6% specified that this was free. A further 14% added an interest in the free food and transport that MRC provides to study subjects. • Many of those who were invited but declined reported similar benefits, although 25.4% said they did not know or had never heard of any benefits. • Of the whole population (including those not invited), the percentage of those reporting no known benefits rose to 31%.

16. Survey findings –Negative ideas about MRC (table 16) • When asked if they had heard any bad things or negative ideas about MRC, 28% of the population (regardless of whether they were asked to participate or not) said they had. • 38.1% of those who had accepted to participate had heard negative ideas (compared with 27.4% of those invited but who declined). • Many mothers still participated despite these fears, and virtually all reporting negative things about MRC also saw benefits • In all cases except one single mention of a concern with vaccine adverse effects, these negative ideas turned on the notion that MRC ‘takes’ or ‘steals’ blood.

17. Understanding ideas about blood-stealing – academic debates • Most MRC staff and scientists see these as unfortunate rumours linked to misunderstanding and ignorance of medical research practices, and the social, political and racial isolation of the laboratories – gradually being remedied through education, best bioethical practice in informed consent, and more inclusive employment strategies • Most historians and anthropologists see these as a local idiom for (a) resistance to medical research in post-colonial conditions or (b) commentary on the consequences of capitalism and globalisation, part of a resurgence of rumours of the occult, witchcraft, sorcery, body-part theft and cannibalism in African modernities. • But problems in interpretations as ‘resistance’ – to what? If Gambians understand MRC as health provider not research institution, what are they resisting?

18. academic debates ….. • ‘Blood-stealing’ as part of resurgence of the occult to make sense of global economic relations • ‘The preoccupation with the occult is, at one level, about the desire to plum the secret of the invisible means of rapid enrichment; at another, it is concerned to stem the spread of a macabre, visceral economy founded on the violence of extraction and abstraction in which the majority are kept poor by the mystical machinations of the few……(Comaroff and Comaroff 1999) • But problems in conflation of blood and all things occult – lose specificity of local understanding of ‘blood’ • Problems in casting this as ‘meta-commentary’ in such general terms – what are local debates about exchange relations (and the extent to which they might implicate blood)?

19. Ethnographic perspectives – The struggle for blood • Life conceived of as a struggle to accumulate and re-accumulate blood/strength – e.g. in pregnancies and birth-spacing (Bledsoe 2002) • Women’s agricultural and domestic labour hinders recuperation – hence seen as less appropriate blood donors • Varied views of replenishability – but people speak of medicines and food which build-up blood • Importance of maintaining balance between blood and other body fluids

20. Ethnographic perspectives –The meaning of blood • In much of East Africa, blood is a substance of relatedness and kinship • In much of West Africa, relatedness depends on circulation of ‘white fluids’ – semen-breastmilk (hence concerns about intercourse while breastfeeding, and views that wet-nursing constitutes kinship) • Red blood instead associated with self (liver), personal strength, plumpness and power • Hence able to be seen as a commodity

21. Commodification of blood in transfusion • Blood is actually commodified in Gmabian hospitals • Cham (2003) documents how relatives ‘find blood’: • Give to their patient • Give to blood bank, and withdraw in exchange • Buy blood for cash from ‘professional donors’ by paying lab staff • A valuable commodity – one pint of blood cost 150 dalasis

22. Narratives referring to blood-taking Many statements….. MRC takes blood from healthy people and sells it When one joins the MRC study, they will take much blood from your child and if you are not lucky the child may die. I heard that MRC do take blood from their patients and sell it. I heard from people that MRC would treat your child until he/she grows older. Then they take his/her blood and give it to others. Some emphasise quantity….. I heard that MRC people take blood from their patients put that together and treat others with it. I heard that MRC people take blood from their patients in large quantities continuously. Some emphasise uncertainty….. I heard when your blood is good MRC will steal it. I don't know maybe they sell it. I cannot believe it. I will not however join MRC. I fear they will steal mychild's blood.

23. Some narratives suggest unreasonable transactions… Because of the outcome: Initially the child joined the MRC programme…later he fell ill and was taken to MRC. He heard they took blood and put it in a container. After returning home the child did not improve, and he was taken back where some blood was taken again. The child died four days later. Because of lack of feedback: They do not say what they do with the samples. They do not provide feedback about the blood taken to the person concerned. As this is not done, the rumour that is spreading about selling blood must be true Because of views of ‘white people’: The whites would never do anything free of charge, they are after their self-interest. They make themselves the priority and overwork you. Sometimes they pretend to be nice or good but behind this they have a different motive

24. Interpretations of selection practices can play into anxieties… They would also pick and choose those children to join and those not to join. If the intention is to protect children why do they accept some and reject others? They are interested in healthy fat babies I heard they look for healthy children and take their blood MRC were attracted by my son’s blood, because our blood is of higher quality than that of the white people African blood is stronger than Europeans’

25. Some narratives suggest reasonable transactions, or a balance of benefit against fear Whenever blood is taken, they ensure that enough medicines are given to replace the loss I am convinced that the blood they take would not earn them so much money sufficient for daily living I heard MRC steals blood. I believe it. I saw them take blood from patients. I feared for my child to join but I had to hence she gets treatment there I have heard that MRC takes blood from their registered children but didn’t pay heed to this, I just wanted to register my child with them for better treatment Gender differences: women seem more likely to background worries and foreground benefits; intra-household disputes

26. A more materialist interpretation – an economy of blood • Sense of transaction in narratives about MRC (both fair – e.g. giving blood ‘in exchange’ for treatment – and unfair – e.g. when too much blood taken, or no feedback given…) • Cultural associations between blood, strength and power; blood not associated with kinship/relatedness so easy to think of as a commodity; commoditisation of blood in hospital donation practices • Ie. direct relationships between bodily processes and wider economic processes, rooted in understandings of blood accumulation and depletion that both take place within and transcend the body • Is ‘blood economy’ thinking on the rise as (a) value of blood increases compared with falling real incomes; (b) as interplay of MRC interest in blood with local thinking enhances ‘blood calculus’ in local illness diagnostics? • ‘Age of blood’ in West Africa contrasting with ‘Age of immunology’ and flexible specialisation in Europe and America (Napier, Martin)

27. Implications – taking local framings seriously • Rather than focus only on trial-specific bioethical practices, need to acknowledge broader ways that people think about MRC as an institution • Rather than focus only on education, demystification of science and the creation of an informed research subject, could develop dialogues with communities based on ideas of ‘reasonable transaction’, being explicit about each side’s interests • Work on public engagement with science advocates moving from one-way education to dialogue and deliberation open to local framings - such as those around the economy of blood • Even ‘participatory’ approaches which do not appreciate such radically different framings can be counter-productive, leading to further misunderstanding (e.g. lab visits) • In the contexts of globalization and inequality that now pervade medical research in Africa, no bioethical magic bullets – instead such dialogue becomes a crucial part of the 'complex and difficult process of linking research in resource-poor settings to the services demanded by poor people' (Farmer 2002).