Genetic Responsibility & Remoteness

The aim of this project is to investigate the configuration of health equity in remote islands of the Maldives by focusing on inherited anemia. Within the last decade the prognosis for thalassaemia patients in the Maldives is about to change from a fatal pediatric diagnosis into a care-intensive chronic condition; and the risk of giving birth to a child homozygous for thalassaemia has become somewhat predictable and avoidable. In short, genetic destiny has become linked to genetic responsibility.
Genetic responsibility (Novas & Rose 2000) in treatment and prevention, however, is unevenly observed across the archipelago. Despite hosting one third of the population, the capital island Male’ has a far lower proportion of new thalassaemia major births, and urban patients are more adherent to their treatment schedule and thus are generally in better health. Two thirds of the local population live in scattered, small island communities in what patients and clients often experience as a more or less remote health periphery. Remoteness, however, is never just a plain geographical fact (Ardener 2012). This project scrutinizes remoteness with regard to genetic responsibility as a relational outcome of geography, genes and human agency.