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A collaborative research project aiming to provide a new perspective on the history of medical research by focusing on the experiences of the research subjects. It sets out to explore the ethics of accountability in medical research at both the individual and collective level by recovering and analysing the views of those who were willing or unwilling subjects of medical research in Europe between the 1940s and 2001. Funded by a Wellcome Trust Programme Grant (grant nr. 0906580/Z/11/A) awarded to Prof Paul Weindling, Principal Investigator, and co-applicants Dr Marius Turda, Dr Viviane Quirke, and Dr Elizabeth Hurren (who has since moved to the University of Leicester), "Disputed Bodies" is based at our Centre for Health, Medicine and Society: Past and Present, where it was launched in January 2012.
Even after the revelations of extensive and gruesome medical experiments under the Nazis, the expansion of medical research tended to place scientific knowledge above informed consent and the welfare of the research subject. Today, although patient groups are more active, better organised, and are increasingly able to influence medical research - particularly in cancer studies – the individual perspectives of research subjects remain under-researched in the medical humanities.
The research programme adopts an innovative approach by focusing on subjects’ experiences of participating in medical research. While recent histories of medical research speak of a ‘culture’ of medical experimentation, this concept has only rarely been extended to include the perspectives of the subjects themselves. Individual narratives of suffering and trauma, and the health implications of being involved in experiments have hardly been studied historically and comparatively in the European context.
The overarching project aims and ambitions are divided into three individual and a fourth, integrative project:
Project 1 develops the analysis of research subject narratives under National Socialism. It has located victim narratives in various genres from published autobiographies to diaries from the period. It builds on a biographical database of ca 25000 victim life histories, providing both a framework for the project and enabling comparative cohorts to be identified. These derive from the project developed as “Victims of Human Experiments and Coerced Research under National Socialism”, funded by the AHRC (2008-11). The current analysis of narratives involves the circumstances of the experiments, and how memories evolved over the lives of survivors, as when they had to obtain therapy for injuries as well as “proof” of a scientific violation. Methodologically innovative, as the first “total population” study, the dense collection of narratives allow in-depth comparative studies to be made.
This project is conducted with Aleksandra Loewenau, as postdoctoral research assistant. We are working jointly on the Auschwitz X-ray sterilisation victims, linking diverse sources. Here, an aim is to link document to oral testimony. Dr Loewenau is continuing to research Polish experiment victims, as her special field of expertise.
Project 3 addresses the history of cancer patient narratives rather than the history of the disease itself. It is all the more important to consider such narratives that patients’ experiences have become central to the design and delivery of cancer treatment and support, and patients have had unprecedented opportunities to shape cancer policy and influence the planning of cancer services. Although the main focus is on the UK, in the course of the project comparisons will be drawn with other countries, especially the US and France. This comparative perspective aims to situate cancer patient narratives in their historical context and to highlight the complex circulations involved in the globalization of attitudes to the disease.
Project 3 includes a PhD dissertation carried out by Catriona Gilmour-Hamilton and supervised by Dr Quirke. It is provisionally entitled “Experimental Selves: Experiences, Expectations and Discourses of Cancer Research in Britain, 1960-2005”.
This integrative and summative project revisits the major themes explored across the programme of research by tying together the three individual projects to illustrate how the disputed body can revise traditional thinking about “cultures” of medical research in post-1945 Europe. Together in project 4, with the Post-Doctoral Research Fellow Dr. Tudor Georgescu, we set out to better appreciate how narratives about disputed bodies shaped medical research cultures and the development of ethical standards in 20th-century Europe, and to understand how this complex and contested history informed the adoption of European Clinical Trials Directive in 2001.
Within this framework, Tudor currently focusses on the ethical debates surrounding the early years of IVF in Britain and Germany. In particular, the aim is to investigate the ethical ramifications of different perceptions of IVF as either experimental or therapeutic, the manner in which social anxieties about its implications were verbalised by professional or otherwise lobby groups, and, ultimately, how these came to influence subsequent regulatory frameworks.