The Futures of Biosocial Models of Carriership and Sociology of Cures: Sickle Cell, Thalassaemia and Genomic Frontiers
Maria Berghs (De Montfort University, UK), Bassey Ebenso (Leeds University, UK), Bola Ola (Lagos State University, Nigeria) & Anna Cronin-Chavez, London School of Hygiene and Tropical Medicine, UK)
Panel: Imagined and abandoned futures
Abstract: In this paper we use a sociology of cure to examine some of the latest genomic developments affecting people with sickle cell disorders and thalassemia. A history of racism, biological complexity and neglect, meant that there used to be few real treatments for the conditions and the options consisted of giving folic acid, blood transfusions, iron-chelation therapy for thalassaemia and hydroxyurea (a cancer drug) for sickle cell as well as pain alleviation. Recently however, for the first time in twenty years, new therapies are also being approved, like crizanlizumab, with several more in differing stages of development. Similarly, there was only one cure available in stem cell transplant but only from related donor in very significantly ill children because of the risks. Yet, now new genomic frontiers have opened with several clinical trials using various forms of gene therapy enabling new forms of genetic cure. Yet, these cures are stratified by biological promises and risks, ethnicity and inequalities and have mainly been available in the Global North. Additionally, they are in trial stages of development meaning it might take years to get to places in Africa, where for example, most people with sickle cell live. Alongside, the increase of therapies and cures has been the expansion in carrier testing for mutations and diseases meaning carrier status will take on increasingly complexity. While sickle cell and thalassaemia are often viewed together, they have not always had access to the same therapies and have a different biosocial understanding of carriership. In the Mediterranean region, around a future which can be chosen or negated and in West Africa, we note how biosocial models of carriership have developed around avoidance of romantic relationships. We note how this might change in light of the challenges of understanding rights, ethics and responsibilities of therapies, genomic frontiers and expanded carrier screening.