(Dis) Continuities between genomics and society

inequalities, policies and life experiences with Sickle cell Disease

Abstract

This article addresses the relationship between society and genomics based on the experience of people with sickle cell disease, genetic and hereditary sickness, more common in the country. It seeks to problematize the interfaces between knowledge and health policies, through the approach on living conditions and narratives about sickle cell disease. It starts with multisituated research and ethnographic interviews with members of the Paraibana Association of People with Hereditary Anemias. Of the discontinuities, social inequality covers the black, poor and low education population, whose illness falls on life trajectory, self-care and access to health services. For biomedical technology, the heel test stands out as a diagnostic device and access to care, despite the limits on coverage and the service network. Technology that was not reached by generations of people deprived of genetic care, despite the disease "for life". Biosociality contributes to the construction of identity, reiterating ancestry and the political dimension of life.