Fighting for Human Rights: DNA, Hansen's Disease and Separated Children in Brazil

Authors: Glaucia Maricato

Abstract:

Our research deals with specific use of DNA tests in Brazil – aimed at financial reparation for the institutionalized and otherwise scattered offspring of leprosy patients who, from the 1920s up through the 1980s, were subjected to compulsory internment in the 'hospital-colonies', specialized in the containment of Hansen’s disease. Through a social movement, the ex-patients themselves gained the right, in 2007, to financial compensations. At the moment, the movement is seeking reparation for the (now adult) children of these people as well. Many of these children grew up in orphanages, in adopted families, or do not have official documents to prove their family belonging. In 2011, a team of Brazilian geneticists had volunteered their services, applying DNA tests in order to ascertain the connection of certain individuals to an ex-internee of the leprosarium. We have accompanied the activities in four different ex-colonies in order to understand how the DNA test was being signified by those being tested, and how the test fit into already existent notions of family. Inspired in the writings of scholars such as Sheila Jasanoff and Helena Machado, we examine the possibility of a 'geneticization of family ties' when people are obliged to back their claim for human rights by producing legal proof based on blood tests. However, in like fashion to other ethnographic studies on this theme, we encountered among tested adults a number of creative strategies that allow for the co-existence of the idea of 'scientifically-based' blood ties alongside other more traditional ways of signifying kinship.

Keywords: human rights, social movements, DNA tests, Hansen's disease