Dr Aglaia Chatjouli (INNOVIA Foundation, Athens, Greece)
Prof. Sarah Franklin (BIOS, LSE)
In the case of thalassaemia reproduction is a contested field. Well established biopolitics aiming to ‘fight the disease’ (on the population and individual levels) are appropriated and reconceptualized in diverse ways by people with thalassaemia. Reproduction is controlled (biomedicalized, pathologized and/or normalized) via national prevention programs and biomedical technologies aiming to minimize new thalassaemic births. On the other hand, via the biomedically enabled ‘achievement of reproduction and parenthood’, adult women and men with thalassaemia are becoming more active reproductive agents, gaining control over the field of (their own) reproduction, gradually establishing a say at the underlying norms at stake.
In both contexts reproduction emerges as a field of normalizing potential: via the symbolic power of the (biotechnologically) able reproductive body, as the means of ensuring the reproduction of the national population and as the basic component of gender competency. At the same time, reproductive management (at the institutional, the biomedical and individual levels) invokes and informs discussions and reflections upon the key question regarding control upon life and death. Which are the key assumptions underlying reproductive decision making and in what terms and by whom are they contested? What is at stake for thalassaemics themselves?
The National Prevention Program targeting thalassaemia is strongly supported by both state structures and patient associations. Despite its successful implementation and popularity it triggers a bottom-up questioning of the ‘value of human life’, of ‘who is considered normal’, of ‘who has the right to decide, to control and define the boundaries’. Prevention practices aiming to inform the public and especially the future parents, reveal the underlying assumptions and determinisms while constructing normative bodies and lives. At the same time, biosocial subjects such as thalassaemic individuals appropriate the logics of prevention and propose alternative normalities and reproductions, embodying different yet normal reproductive bodies.
This paper aims to problematize and contextualize how prevention practices and biomedical innovations raise issues of reproductive control, of reproductive choice and reproductive agency.
Aglaia Chatjouli holds a PhD in Social Anthropology. Her main research interests concern the relation betweenbiology and culture, between (bio)difference and normality in the context of health and beyond, as well as the shifts and continuities in the imaginings of natures - human and otherwise. Her doctoral thesis focused on people with Thalassaemia in Greece, and examined issues of stigma and collective action as well as the cultural constructions of genetic illness, the politics of prevention and the reconceptualisations of chronic illness, disability and normality, as well as the conceptual tropes of genetic information.
Aglaia earned her BSc from King’s College London, in Molecular and Cell Biology and her MSc from Oxford University, in Human Biology. She was a research associate at the National Hellenic Research Foundation working in the European Program: «European Debates in Biotechnology & Life Sciences in European Society». She is co-editor of an anthropological series published in Greece at Polytropon Publications. Aglaia is currently working with Innovia, a virtual research institute based in the Netherlands concerned with the implications of new developments in health technology for patients and health advocacy organizations.
Professor Sarah Franklin has written and edited 15 books on reproductive and genetic technologies, as well as more than 100 articles, chapters, and reports. She has conducted fieldwork on IVF, cloning, embryo research, and stem cells. Her work combines traditional anthropological approaches, including both ethnographic methods and kinship theory, with more recent approaches from science studies, gender theory, and cultural studies. Professor Franklin has an MA in Women's Studies from the University of Kent (1984) and an MA in Anthropology from NYU (1986). She studied for her PhD at the Birmingham Centre for Cultural Studies from 1986-1989, taking her doctoral degree in 1992. From 1990-1993 she worked both in the Department of Social Anthropology at the University of Manchester and the Department of Sociology at Lancaster University. She was promoted to a Chair in the Anthropology of Science at Lancaster University in 2001. In 2004 she moved to the LSE where she is Professor of Social Studies of Biomedicine and Associate Director of the BIOS Centre.
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Part of the Cambridge Interdisciplinary Reproduction Forum seminar series.
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