Inheritance, heredity and intermarriage among cousins in Cariri Paraiba:

anthropological analysis of mucopolysaccharidosis disease

Abstract

In genetics, much is said about the "Founder Effect", as the emergence of a high number of cases of a disease in a particular region, city, town. In this regard, Cariri Paraibano has revealed itself as a region that registers cases of Mucopolysaccharidosis (MPS), since 2005, but there are cases reported by the interlocutors from long before that recorded, attributed to marriage between cousins by the discourse of biomedicine. It is a disease of genetic origin, received from parents and with low incidence in different countries, thus considered a rare disease. Instigated by this discourse, we started to question what were the perceptions of families with people with MPS about the notion of inheritance or heredity of the disease and the understanding of kinship relations in cases identified by genetics. The fieldwork was carried out in two expeditions (two stages), so called because it was characterized by an immersion in the cities of Cariri Paraibano, when we traveled through 11 municipalities and interviewed 16 families. In these two moments, we carried out ethnographic interviews and, being the second expedition the moment in which I completed the genealogies of some families that participated in the first expedition, which allowed me to meet new cases of the disease indicated by the families already interviewed. With the expeditions carried out, it was analyzed that the inheritance of Mucopolysaccharidoses for the families is something that is directly linked to their life story, and that can be perceived in the discourse from the relationships that "are in the blood" that mediate in a certain way the notion of who is family from the individuals who have a blood proximity. Inheritance is also triggered by kinship when the geneticist points out, from the heredogram, the relationship between members of the same family, but this notion is guided by the interlocutors' understanding of who is a cousin or not, or who is a "distant" and "close" cousin. Locality plays its role in the representation of heritage when part of the interlocutors descend from the same places, places, thus having the same origin. These places today have formed towns based on these few families, thus allowing the relationship between people from their daily lives. Finally, one speaker calls attention to the construction of genetic risk, and how this inheritance can also be perceived as a risk of transmission to future generations, an element not perceived by most of the group. So the inheritance of Mucopolysaccharidoses is made up of different perspectives based on what was lived by the families, and can also be understood as an inheritance from local experience and heredity from a biological perspective that is yet to come in future generations.