Paper short abstract:

In the Greek case of Thalassaemia, implemented biopolicies such as the Prevention Programme result in the decision that no more Thalassaemics should be born. Focusing on sufferers’ experiences of such biopolicies the paper discusses the occasions when the moral dimension of such decisions is renegotiated.

Paper long abstract:

This presentation aims to discuss the issues raised within the interests of this workshop by drawing from research carried out in Greece focusing on the genetic (chronic) condition of Thalassaemia, a hereditary condition with high prevalence of heterozygotic carriers in various areas around the Mediterranean. This case study is believed to be an exemplary of policies being implemented, policies based on decisions about life and death carried out by various governmental and social institutions. In the case of Thalassaemia, thalassaemic patients, medicalised from the very onset of their lives, deal with such decisions in multiple ways, when dealing with therapies, current and future ones, blood transfusions or the welfare system. On top of all such decisions, acting also as a kind of framing device, stands the National Prevention Program for Thalassaemia, active since the '80s (involving testing and counseling of carriers-couples usually prior reproduction choices), a paradigmatic realization of the decision that no more people with Thalassaemia should be born, (since the choice has been made regarding the "abnormality" of Thalassaemia, no more births would contribute to the "genetic normalcy" of the population). This decision, whether presented as a moral choice or not has been normalized-routinized and currently doesn't embody any kind of a moral dilemma at least on the level of the official decision-making involving key-actors and institutions. By focusing on the actual patients -Thalassaemic sufferers-, representing also the "last generation of Thalassaemic sufferers" this research highlights the way such decisions/moral choices are appropriated by those that embody in all respects exactly that which was decided/ chosen to be avoided or in other words, not to exist. In what occasions and serving what purposes is the moral dimension of such decisions "remembered" or brought to the surface? In what occasions the bringing forward of the moral character of such decisions allows and enables the transformation of such moral choices once again to moral dilemmas?