Analyse des enjeux éthiques soulevés au cours d’un programme de recherche épidémiologique de dix années en Guyane française : limites de l’encadrement actuel et solutions adoptées

Abstract

This paper discusses the ethical aspects of a large research program in virology, conducted since 1994 and which has evolved in parallel with the elaboration of bioethics laws in France. This research, which involved the collection of a considerable amount of epidemiological data in the field, focused on epidemiological determinants (mother to child transmission, genetic susceptibility/resistance) of the human oncogenic retrovirus human T cell lymphotropic virus type 1 (HTLV-1). Data were collected from a specific population (Noirs Marrons) living in remote areas in French Guiana (South America). This ethnic group of African descent is highly endemic for HTLV-1 and associated adult T cell leukemia/lymphoma. The population has lived for two centuries on either side of the Maroni river, which constitutes the frontier between French Guiana and Surinam. The low socioeconomic and education levels of a large part of this population are mainly explained by a recent housing/residence fixation on the French side of the Maroni river. It is also linked to significant immigration from Surinam due to the civil war, which lasted for five years in the late 1990s, in this country. Conducting epidemiological surveys in this peculiar context illustrates the limitations of the available current legal framework in France for such studies. Indeed, several important ethical issues arose concerning not only individual and population benefits, but also specificities of the given information and of the informed consent. Another question concerns individual information feed-back in such a context of persistent viral infection, with a very low disease incidence, in a population with a relatively low education level. The goal of this work was mainly to report several of the ethical issues encountered and to discuss possible ways of achieving better information deliver and consent procedures in such a context. Indeed, these procedures should include new ideas and regulations promoting a real partnership, in order to conduct long-term epidemiological studies in populations with a low education level.

Ética e justiça nas pesquisas sediadas em comunidades: o caso de uma pesquisa ecossistêmica na Amazônia

“…Em princípio, os participantes sabiam o que os pesquisadores sabiam a seu respeito. Além disso, o diagnóstico da visão em si mesmo não levantava problema ético particular, o que contrasta com os casos correntemente discutidos na literatura (por exemplo, Tortevoye et al, 2007). Mas se o diagnóstico revela no participante um problema de vista, e se existem os meios, não scientiae zudia, São Paulo, v. 9, n. 1, p. 129-47, 2011 disponíveis localmente, para corrigi-lo, mesmo imperfeitamente, é um dever dos pesquisadores de pôr em operação esses meios?…”

Éthique et justice dans les recherches participatives ancrées dans les communautés. Le cas d’une enquête écosystémique en Amazonie

“…En principe, les participants savaient ce que les chercheurs savaient à leur propos. En outre, le diagnostic visuel à lui seul ne soulevait pas de problème éthique particulier (Tortevoye et al, 2007). Mais si le diagnostic montre chez le participant un problème de vue, et que des moyens, non disponibles localement, existent pour le corriger, même imparfaitement, est-ce un devoir pour les chercheurs de mettre en oeuvre ces moyens ?…”