title: [Moving from patient information to involvement in associations for people living with HIV participating in a medical study in Senegal - ANRS cohort 1215].
abstract: Based on work in anthropology and the experience of the implementation of a project on ethics, this article describes the contributions of the ANRS 1215 cohort to information of participants and community involvement in research. It draws a parallel between the development of information methods and the roles gradually held by PLWA individually or collectively. From 1998 to 2011, the PLWA have diversified theirs activities (psycho-social support, administrative tasks, ethical watch function) and have contributed to improve the information of participants. This involvement of PLWHIV in ethics, which belongs to a long-term process, is analyzed through social, political, economical and ethical evolutions, both at national and international level.
authors: Centre régional de recherche et de formation à la prise en charge clinique de Fann, CHNU de Fann à Dakar, Sénégal (CRCF), UMI 233 de l'IRD TransVIHMI, Dakar, Sénégal, mathilde.couderc46@gmail.com.
authors: M
authors: M
authors: Couderc
authors: C
authors: C
authors: Desclaux Sall
mesh_terms: D035843:Biomedical Research; D002986:Clinical Trials as Topic; D015331:Cohort Studies; D003153:Community Health Services; D015658:HIV Infections / Q000453:epidemiology*; D015497:HIV-1; D015438:Health Behavior; D006801:Humans; D057226:Information Seeking Behavior; D010353:Patient Education as Topic; D010358:Patient Participation / Q000706:statistics & numerical data*; D012675:Senegal / Q000453:epidemiology; D012944:Social Support; D000078329:Workforce