J. Barbot, ACTING ON CLINICAL-TRIALS - THE EXPERIENCE OF AIDS ORGANIZATIONS IN FRANCE, Revue d'epidemiologie et de sante publique, 46(4), 1998, pp. 305-315
This article analyses the action of organizations fighting against AID
S, from a sociological point of view, with regard to clinical trials c
onducted in France. It first refers to past work, and briefly describe
s how TRT5 was created (TRT5 is an interassociative group which defend
s the interests of persons suffering from HIV in clinical research). T
he organization of meetings, in 1993, between associative militants, m
ethodologists and clinicians to discuss trial protocols with the suppo
rt of the Agence Nationale de Recherches sur le Sida (ANRS) is an orig
inal experiment in France. Using a series of ethnographic observations
made between 1994 and 1997, the article retraces the way in which, du
ring these meetings, AIDS organizations took position on the methodolo
gy of controlled trials based on criteria of clinical effectiveness. I
t makes an analysis of the associative work done on this occasion on t
he information and consent sheets aimed at patients. Finally, it asses
ses the effect on associative mobilisation of current changes with reg
ard to carrying out trials: the use of viral load as predictive marker
s of clinical effectiveness, and the wider access, outside trials, to
molecules that are both more numerous and more effective.