This book explores the nature of decision making in one of the most crucial – yet also the most understudied – aspects of the regulatory system around biomedical research: research ethics committees. Every month, all over the UK, groups of people sit down and decide what kind of research should be carried out on patients within the National Health Service (NHS). These groups – Research Ethics Committees (RECs) – made up of doctors, nurses, researchers, and members of the general public, help shape the future of medicine, and play a crucial role in the regulation of a wide range of research from social science to epidemiology, vaccine and drugs trials, and surgery. Despite coming into existence in the late 1960s, and the considerable literature bemoaning the chilling effect such review has on biomedical research, we don’t know very much about how these bodies make decisions. This book provides one of the first empirical examinations of this kind of regulation, drawing on observational, interview, and archival data to give in-depth ethnographic insight into RECs, as they operate in the UK NHS. A key insight of this work is that, despite the trappings of a modern regulatory system – the operating procedures, guidance documents, and websites – NHS REC decision making revolves around very old-fashioned aspects of social life such as interpersonal trust, reputation, and the performance of character, and that an accurate understanding of this kind of regulation requires an acceptance of the inherently social nature of the processes involved.
What does it mean to personalise cancer medicine? Personalised cancer medicine explores this question by foregrounding the experiences of patients, carers and practitioners in the UK. Drawing on an ethnographic study of cancer research and care, we trace patients’, carers’ and practitioners’ efforts to access and interpret novel genomic tests, information and treatments as they craft personal and collective futures. Exploring a series of case studies of diagnostic tests, research and experimental therapies, the book charts the different kinds of care and work involved in efforts to personalise cancer medicine and the ways in which benefits and opportunities are unevenly realised and distributed. Investigating these experiences against a backdrop of policy and professional accounts of the ‘big’ future of personalised healthcare, the authors show how hopes invested and care realised via personalised cancer medicine are multifaceted, contingent and, at times, frustrated in the everyday complexities of living and working with cancer. Tracing the difficult and painstaking work involved in making sense of novel data, results and predictions, we show the different futures crafted across policy, practice and personal accounts. This is the only book to investigate in depth how personalised cancer medicine is reshaping the futures of cancer patients, carers and professionals in uneven and partial ways. Applying a feminist lens that focuses on work and care, inclusions and exclusions, we explore the new kinds of expertise, relationships and collectives involved making personalised cancer medicine work in practice and the inconsistent ways their work is recognised and valued in the process.