Bioethics laws and reality on the ground duringepidemiological studies in french guiana and cameroon

Abstract

the objective of this article is to describe the difficulties encountered, during thetwenty last years, to obey the laws of bioethics in force during epidemiologicalinvestigations, carried out in french Guiana and in Cameroon. these researchtasks aim to better understanding the transmission of two viruses: the human tlymphotropic retrovirus type 1 and the human herpes virus 8. theseinvestigations, carried out in highly endemic villages, for one or two of theseviruses, also aim at searching susceptibility genetic factors for infection inchildren by these viruses. they are scientific researches carried out inpopulations 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, anda blood sampling. using concrete examples, collected during field-investigations, we illustrate the problems encountered to apply, practically, thelaws of bioethics. We will introduce and discuss thus the legislative framework inforce, the studied populations, the concepts of preliminary information andinformed consent, the adaptation necessary to take into account the local socialorganization and the importance of the family hierarchy. Lastly, the question ofreturned results of this kind of investigation will be discussed like that of thepossible compensatory measures. this inventory reveals the limits of the currentregulation, which is often poorly adapted to research in epidemiology in this kindof population and the ethical choices that has thus to be decided by theinvestigator.