title: 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.
authors.affiliation: Postgraduate Program in Social Anthropology, Federal University of Rio Grande do Sul (UFRGS), Av. Bento Gonçalves, 9500 - Prédio 43311, Block AI, Sala 104A, Porto Alegre, 91509-900, RS, Brazil, claudialwfonseca@gmail.com.
authors.forename: Claudia Lee Williams
authors.initials: CL
authors.lastname: Fonseca
authors.forename: Flávia Costa
authors.initials: FC
authors.lastname: Biondi
authors.forename: Glaucia Cristina
authors.initials: GC
authors.lastname: Maricato
authors.forename: Lavínia
authors.initials: L
authors.lastname: Schuler-Faccini