The Politics of Inheritance: trajectories of families affected by rare hereditary diseases in Brazil

Waleska Aureliano (State University of Rio de Janeiro, Brazil), Jociara Alves Nóbrega (Federal University of Rio Grande do Norte, Brazil), Everson Fernandes Pereira (Federal University of Rio Grande do Sul, Brazil) & Luiza Nepomuceno Muniz (State University of Rio de Janeiro, Brazil)

Panel: Imagined and abandoned futures

Abstract: This communication brings together reflections of four Brazilian anthropologists that investigated people and families living with rare hereditary diseases, in diferent regions of the country. The rare conditions investigated are quite distinct: two of them have some tratament, with onset in childhood and/or at birth (Hereditary Spherocytosis and Berardinelli Syndrome), and the other two have onset in adult life, being degenerative and without specific treatment (CADASIL and Machado-Joseph Disease). Despite those differences, we observed common aspects in the trajectory of these families. These four researches are connected through some central points, which we want to address here: 1) the search for a diagnosis, normally a long journey marked by medical mistakes; 2) the search for treatments, when they exist, which may require judicialization for its access; 3) the political and social organization of those affected, through associations and virtual social networks and, finally, 4) the moral and affective implications that emerge in the family’s reproduction processes, when they are marked by a rare and hereditary disease. The researches were carried out in three different regions of Brazil, and based on participant observation that has taken place at hospitals, patient associations and/or virtual groups, accompanied by in-depth interviews. By putting these four investigations into dialogue, we aim to understand the social, political, economic and moral dynamics that permeate the experience of people living with a rare hereditary condition in their families, and the future horizons that are presented to them in the current scenario of the dismantling of public health and the disinvestment in scientific research in Brazil.