[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.
- SourceAvailable from: Ogobara K Doumbo[Show abstract] [Hide abstract]
ABSTRACT: The challenges to global health are vast. Malaria alone accounts for up to 500 million new cases of disease each year and for 2 to 3 million deaths, most of which occur in sub-Saharan Africa. To combat such extensive and devastating diseases, researchers need to conduct medical trials involving the diverse populations and communities that are affected. Doing that ethically and responsibly, explains malaria researcher Ogobara Doumbo of the University of Bamako in Mali, requires that investigators develop an understanding of the social and cultural subtleties that govern how different groups around the world make decisions about participating in research. Only then can the researchers feel assured that the human beings who consent to partake in their studies are fully informed about the possible risks and benefits. This is the second essay of a year-long series that celebrates 125 years of Science by inviting researchers from around the world to provide a regional view of the scientific enterprise. All essays appearing in this series can be found online at www.sciencemag.org/sciext/globalvoices/Science 03/2005; 307(5710):679-81. DOI:10.1126/science.1109773 · 31.48 Impact Factor
- Tropical Medicine & International Health 08/2006; 11(7):975-82. DOI:10.1111/j.1365-3156.2006.01682.x · 2.30 Impact Factor
- [Show abstract] [Hide abstract]
ABSTRACT: Three principal factors affect the stringency of medical researchers' obligation to provide antiretroviral treatment to participants in non-HIV/AIDS studies that are conducted in developing countries: (1) the centrality of HIV/AIDS to the study design, (2) the extent of the researcher-participant interaction, and (3) the cost relative to the study budget. I provide a basis for assessing the comparative stringency of the researchers' obligation to provide this type of ancillary care. Practically, given the range of possible responses to study participants' needs, calibrating the researcher's responsibility to provide ancillary care is a useful step in ethical analysis. Theoretically, a gradation of obligation suggests how research ethics committees or institutional review boards can take multiple, potentially conflicting ethical factors into account without undertaking spurious efforts to quantify their importance.American Journal of Public Health 12/2007; 97(11):1956-61. DOI:10.2105/AJPH.2006.093658 · 3.93 Impact Factor