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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). Broader project. - PowerPoint PPT Presentation
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Childhood Vaccination: Science and public engagement in international perspective
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)
Broader project
Funded by ESRC Science in Society Research programmeChildhood
vaccination as a key issue for exploring changing science-society
relations, involving encounters betweenRapidly advancing,
globalised health technology and technocracy Deeply intimate,
personal and social world of childrearingBritain-West Africa
comparisonGambia: routine vaccination and vaccine research 2
papers/seminars
Fluid Anxieties:Techno-science and the economy of blood in The
Gambia
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?
Gambian views.
Are of an institution, not particular trialsAre based on MRCs
historical reputation/experience, not shaped through current
bioethical practicesHold that MRC offers good, free treatment to
study subjects, but also steals bloodBlood-stealing ideas sour
otherwise good community relations and fieldworker experiencesHow
should blood-stealing be understood and addressed?
Broader relevance of study
How the trans-national ordering and economy of medical research is
interpreted in a particular social and cultural worldAcademic
significance to current debates about post-colonial
technoscienceCritical to sustainability of medical research in
Africa: levels of trial participation, political legitimacyPublic
engagement with science towards dialogues which appreciate
fundamentally different framings
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
Context and methods
Spirit of translational research improving communication between
researchers and publicsAnthropological approach PVT as a case study
but paper not about the PVTEthnography (March Oct 2003) -
Tambasansang village near Basse in URD - PVT and previous MRC
studiesSurvey (Oct 2003 Mar 2004) 800 mothers in three rural
districts of URD (Fulladu, Wuli West and Sandu, within PVT area)
(also 800 in WD)
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)
Survey
Population and sampling: All resident children aged 12-24 months
eligibleTwo-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
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)
Childs health card data concerning recorded immunisations and
their dates copied where available.
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.
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.
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.
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%.
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.
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?
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)?
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)
Womens 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
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
Commodification of blood in transfusion
Blood is actually commodified in Gmabian hospitals
Cham (2003) documents how relatives find blood: Give to their patientGive to blood bank, and withdraw in exchangeBuy blood for cash from professional donors by paying lab staff
A valuable commodity one pint of blood cost 150
dalasis
Narratives referring to blood-taking
Many statements..MRC takes blood from healthy people and sells
itWhen 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 my child's
blood.
Some narratives suggest unreasonable transactions
Because of the outcome:Initially the child joined the MRC programmelater 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
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 sons blood, because our blood is of higher quality than that of the white people
African blood is stronger than Europeans
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 lossI am convinced that the blood they take
would not earn them so much money sufficient for daily livingI
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 thereI have heard that MRC takes blood from their
registered children but didnt 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
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)
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
institutionRather 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 sides interestsWork 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).
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