Project REENCONTRO: ethical aspects of genetic identification in families separated by the compulsory isolation of leprosy patients in Brazil

Abstract

In this paper, we discuss the experience of a team of geneticists, working in partnership with a Brazilian social movement aimed at promoting the rights of victims of Hansen's disease. These university researchers propose to use DNA test results to ascertain kinship connections and thereby reunite families that were sundered apart by draconian state policies of the mid-twentieth century that decreed the forced segregation of leprosy patients and the institutionalization of their children. The team's aim is to help revert stigma and reinforce positive group identity as well as to facilitate judicial claims to moral and financial reparation from the Brazilian state. We will discuss how, notwithstanding the voluntary nature of tests, mediated at all times through the social movement, the geneticists take care to follow clear ethical guidelines in the collection and stocking of DNA samples as well as in the devolution of test results. The subsequent inclusion of anthropologists in the team brings to the fore new ethical dilemmas ranging from procedures in field research to the possible consequences of research results.

La genética como herramienta de reparación. Desafíos para una Argentina mestiza

“…En ese caso la violencia estatal se ejerció sobre individuos y familias completas que fueron encerradas en leprosarios, y separadas y/o reubicadas luego. La información genética fue una de las vías mediante las cuales se pudo revincular a personas entre sí y otorgarles los derechos y reparaciones que el Estado brasileño había dispuesto (Fonseca et al 2015). En ambos casos fue la búsqueda de las familias y de organizaciones sociales la que incentivó la utilización de la genética como una de las tantas herramientas de reparación.…”

Narrativa, sofrimento e riso: algumas reflexões suscitadas por uma experiência etnográfica

“…As narrativas das experiências e trajetórias dos sujeitos internados nessas instituições são abordadas em vários trabalhos acadêmicos (SERRES, 2004;MACIEL et al, 2003;FARIA, 2009). Outros pesquisadores têm abordado a política de reparação estatal para os que foram submetidos a isolamento compulsório (MARICATO, 2015) e a luta pelo direito à reparação empreendida por seus filhos e filhas MARICATO, 2013;FONSECA et al, 2015). Esta última gama de trabalhos levanta questões que nos levam a perceber o protagonismo dessas pessoas ao compartilhar depoimentos de sofrimento.…”