EDCMA

Description

Li-Fraumeni syndrome is a rare syndrome in most parts of the world and is known for predisposing its carriers to the development of multiple tumours throughout their lives. In Brazil, despite the existence of the classic version of the syndrome, there is a high prevalence of a variant in the south and south-east of the country, known as the "Brazilian variant". Regarding this variant, geneticists have pointed to a common ancestor for all carriers, a de novo born in the 18th century, whom geneticists hypothesised would have been a drover. In view with this genetic and ancestral approach, the research follows paths in kinship studies, thinking about how the syndrome and the notion of a common ancestor permeate family memories and history.  In this sense, research into the syndrome makes it possible to reflect on how the notions of transmission, substance, ancestry and identity intersect with the questions posed by living with the syndrome. At the same time, medical genealogies are put into perspective, as well as the relationship between genealogies and memories from the optics of computational kinship, thinking about this data with the help of computer programmes.

Juliana Caruso is a post-doctoral researcher in the social anthropology programme at the University of São Paulo (USP), with funding from FAPESP (São Paulo Research Foundation), doing an internship at the University of Edinburgh. She has been carrying out research on kinship and hereditary cancer in Brazil. She carried out her PhD at the EPHE (École Pratique des Hautes Études) and was a doctoral student affiliated with the LAS (Laboratoire d´Anthropologie Sociale- EHESS/Collège de France). The research was on kinship relations, endogamy, and marriage among traditional caiçaracommunities in South-eastern Brazil. Since her master's degree in Social Anthropology at UFSC (Federal University of Santa Catarina), she has been developing computational analysis of kinship relations using programmes aimed at this area.