[Acting on clinical trials. Experience of organizations for the fight against AIDS].
This article analyses the action of organizations fighting against AIDS, from a sociological point of view, with regard to clinical trials conducted in France. It first refers to past work, and briefly describes how TRT5 was created (TRT5 is an interassociative group which defends the interests of persons suffering from HIV in clinical research). The organization of meetings, in 1993, between associative militants, methodologists and clinicians to discuss trial protocols with the support of the Agence Nationale de Recherches sur le Sida (ANRS) is an original experiment in France. Using a series of ethnographic observations made between 1994 and 1997, the article retraces the way in which, during these meetings, AIDS organizations took position on the methodology of controlled trials based on criteria of clinical effectiveness. It makes an analysis of the associative work done on this occasion on the information and consent sheets aimed at patients. Finally, it assesses the effect on associative mobilisation of current changes with regard to carrying out trials: the use of viral load as predictive markers of clinical effectiveness, and the wider access, outside trials, to molecules that are both more numerous and more effective.
Barbot
J
J
CERMES (Centre de Recherche Médecine, Sciences Santé et Société), Unité INSERM-CNRS, Paris.
D000163:Acquired Immunodeficiency Syndrome / Q000517:prevention & control* / Q000628:therapy; D002986:Clinical Trials as Topic; D005602:France; D006801:Humans; D007258:Informed Consent; D009313:National Health Programs; D018579:Patient Selection; D012106:Research; D012959:Socioeconomic Factors