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[BIOETHICS LAWS AND REALITY ON THE GROUND DURING EPIDEMIOLOGICAL STUDIES IN FRENCH GUINEA AND CAMEROON]
Abstract:
The objective of this article is to describe the difficulties encountered, during the twenty last years, to obey the laws of bioethics in force during epidemiological investigations, carried out in French Guiana and in Cameroon. These research tasks aim to better understanding the transmission of two viruses: the human T lymphotropic retrovirus type 1 and the human herpes virus 8. These investigations, carried out in highly endemic villages, for one or two of these viruses, also aim at searching susceptibility genetic factors for infection in children by these viruses. They are scientific researches carried out in populations on low level of education and strong socio-economic constraints. These studies performed in general population are without benefit for the people. They require a collection of the family data, to build genealogic pedigrees, and a blood sampling. Using concrete examples, collected during field-investigations, we illustrate the problems encountered to apply, practically, the laws of bioethics. We will introduce and discuss thus the legislative framework in force, the studied populations, the concepts of preliminary information and informed consent, the adaptation necessary to take into account the local social organization and the importance of the family hierarchy. Lastly, the question of returned results of this kind of investigation will be discussed like that of the possible compensatory measures. This inventory reveals the limits of the current regulation, which is often poorly adapted to research in epidemiology in this kind of population and the ethical choices that has thus to be decided by the investigator.