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TY - JOUR
JO - ARIES, Anuario de Antropología Iberoamericana
TI - THE POLITICS OF INHERITANCE: TRAJECTORIES OF FAMILIES AFFECTED BY RARE HEREDITARY DISEASES IN BRAZIL
VL - 
IS - 2022
PB - Asociación AIBR, Antropólogos Iberoamericanos en Red
T2 - ARIES, Anuario de Antropología Iberoamericana
PY - 2022
M1 - 
SN - 2530-7843
UR - https://aries.aibr.org/articulo/2022/12/4605/the-politics-of-inheritance-trajectories-of-families-affected-by-rare-hereditary-diseases-in-brazil
DO - doi:
AU - Waleska De Araujo Aureliano
A2 - 
A3 - 
A4 - 
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SP - 
LA - Esp
DA - 12/08/2022
KW - Rare Disease, Family and Kinship, Hereditary Disease, Brazil
AB - Spanish: This communication brings together reflections of four Brazilian anthropologists that investigated  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 differences, we observed common aspects that conect the four researches, 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. English: This communication brings together reflections of four Brazilian anthropologists that investigated  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 differences, we observed common aspects that conect the four researches, 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.
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ER -