Public Engagement With Science? Local Understandings of a Vaccine Trial in the Gambia

Abstract

This paper considers how parents engage with a large, internationally supported childhood pneumococcal vaccine trial in The Gambia. Current analysis and professional reflection on public engagement is strongly shaped by the imperatives of public health and research institutions, and is thus couched in terms of acceptance and refusal, and 'informed consent'. In contrast Gambian parents' perspectives on the trial are couched in conceptual and experiential terms that are linked to their wider dilemmas of raising infants amidst the hazards of globally connected village life. Ethnographic research reveals how for most parents, longer-term experiences of the organization managing the research (the UK Medical Research Council Laboratories in The Gambia) as a health-providing institution override their reflection on trial-specific aims. A decision to participate in the trial involves a perceived balance of benefit and danger -- in the extreme, of free medical treatment, versus one's child being drained of blood for sale to Europe. Social relations (especially gender relations) shape this calculus and study participation. This case suggests how the idea of 'public engagement with science' in a globalized context might be recast, with implications for debates in biomedical ethics, and the sustainability of public participation in medical research.

Stakeholder Views of Clinical Trials in Low- and Middle-Income Countries: A Systematic Review

“…45 Parents were anxious that "the trial was a disguise for witchcraft or Satanism," 49 "children's body parts would be removed and sold," or the "white people" would infect them with HIV or tuberculosis. 21 Parents in Puerto Rico were reluctant to enroll their children in a placebo-controlled trial because they "would not trust what is being injected to their children."…”

“…39 In some communities, illness was believed to be due to physical or spiritual occurrences, and herbalists and religious leaders were trusted to protect their child's health, which discouraged participation in trials. 45 The confidentiality measures required in trials were perceived by the community to be a contravention of their cultural practices and were misinterpreted that the trial was unethical or shameful. 40 Researchers also recognized that culturally…”

“…23,40,46 Sponsors in The Gambia elected to treat nonparticipants and siblings of participants to maintain overall community goodwill. 45 Tensions emerged when benefits differed between studies or when there was poor clarity or disagreements on eligibility for reimbursement. 30 Researchers proposed that direct collateral community benefits should be primarily medical rather than monetary and should be maximized through engagement of the country's ministry of health.…”

Anthropologie de la recherche médicale au Sud

“…À Niakhar, des recherches réalisées dans les années 1960 et 1970 pourraient être à l'origine des premières rumeurs. Ces rumeurs peuvent aussi être rapprochées de l'idée -fréquente dans de nombreuses sociétés en Afrique -selon laquelle la force de l'individu est intimement liée à la qualité et la quantité de son sang [31,32]. Les prélèvements sanguins sont considérés comme un vol potentiel, car ils représentent l'extraction d'une puissance individuelle indispensable au travail et à la survie, etc.…”

Pediatric Assent for a Study of Antiretroviral Therapy Dosing for Children in Western Kenya: A Case Study in International Research Collaboration

“…These threats include significant differences in education between investigators and community members (Shapiro & Meslin, 2001); mismatches in the understanding, value, and priorities of health and illness (Fairhead, Leach, & Small, 2006); and limited access to quality health services (Emanuel et al, 2004). While prior studies deal almost exclusively with adult informed consent, pediatric assent is likely to be complicated by the same issues.…”