When the science fails and the ethics works: 'Fail-safe' ethics in the FEM-PrEP study.
This paper will explore the concept of 'fail safe' ethics in the FEM PrEP trial, and the practice of research and ethics on the ground. FEM-PrEP examined the efficacy of PrEP in African women after promising outcomes in research conducted with MSM. This was a hugely optimistic time and FEM-PrEP was mobilised using rights-based ethical arguments that women should have access to PrEP. This paper will present data collected during an ethnographic study of frontline research workers involved in FEM-PrEP. During our discussions, 'fail-safe' ethics emerged as concept that encapsulated their confidence that their ethics could not fail. However, in 2011, FEM-PrEP was halted and deemed a failure. The women involved in the study were held responsible because contrary to researcher's expectations they were not taking the oral PrEP being researched. This examination of FEM-PrEP will show that ethical arguments are increasingly deployed to mobilise, maintain and in some cases stop trials in ways which, at times, are superseded or co-opted by other interests. While promoting the interests of women, rights-based approaches are argued to indirectly justify the continuation of individualised, biomedical interventions which have been problematic in other women-centred trials. In this examination of FEM-PrEP, the rights-based approach obscured: ethical concerns beyond access to PrEP; the complexities of power relationships between donor and host countries; the operations of the HIV industry in research-saturated areas and the cumulative effect of unfilled expectations in HIV research and how this has shaped ideas of research and ethics.
a University of Oxford , The Ethox Centre , Nuffield Department of Population Health, Old Road Campus , Headington , Oxford OX3 7LF , UK.
Patricia
P
Kingori
D060432:Anthropology, Medical; D019380:Anti-HIV Agents / Q000008:administration & dosage / Q000627:therapeutic use*; D002986:Clinical Trials as Topic / Q000941:ethics*; D005260:Female; D015658:HIV Infections / Q000188:drug therapy / Q000208:ethnology* / Q000517:prevention & control*; D006282:Health Personnel; D006801:Humans; D065129:Pre-Exposure Prophylaxis / Q000941:ethics* / Q000379:methods*; D012107:Research Design; D017211:Treatment Failure
D019380:Anti-HIV Agents
Africa; PrEP; failure; fieldworkers; women