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staff to maintain. Fabrice Weissman engages with this experience from the perspective of his own project to document a significant new oncology programme in Malawi in which MSF plays a central part. Bertrand Taithe has been engaged with both for the past five years in discussing how synchronous historical writing ( Taithe and le Paih, forthcoming ) within missions and humanitarian operations can contribute to institutional stock taking (or capitalisation to use the MSF terminology) and to
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.
This book is about science in theatre and performance. It explores how theatre and performance engage with emerging scientific themes from artificial intelligence to genetics and climate change. The book covers a wide range of performance forms from the spectacle of the Paralympics Opening Ceremony to Broadway musicals, from experimental contemporary performance and opera to educational theatre, Somali poetic drama and grime videos. It features work by pioneering companies including Gob Squad, Headlong Theatre and Theatre of Debate as well as offering fresh analysis of global blockbusters such as Wicked and Urinetown. The book offers detailed description and analysis of theatre and performance practices as well as broader commentary on the politics of theatre as public engagement with science. It documents important examples of collaborative practice with extended discussion of the Theatre of Debate process developed by Y Touring theatre company, exploration of bilingual theatre-making in East London and an account of how grime MCs and dermatologists ended up making a film together in Birmingham. The interdisciplinary approach draws on contemporary research in theatre and performance studies in combination with key ideas from science studies. It shows how theatre can offer important perspectives on what the philosopher of science Isabelle Stengers has called ‘cosmopolitics’. The book argues that theatre can flatten knowledge hierarchies and hold together different ways of knowing.
This book examines the relationship between environmental justice and citizen science, focusing on enduring issues and new challenges in a post-truth age. Debates over science, facts, and values have always been pivotal within environmental justice struggles. For decades, environmental justice activists have campaigned against the misuses of science, while at the same time engaging in community-led citizen science. However, post-truth politics has threatened science itself. This book makes the case for the importance of science, knowledge, and data that are produced by and for ordinary people living with environmental risks and hazards. The international, interdisciplinary contributions range from grassroots environmental justice struggles in American hog country and contaminated indigenous communities, to local environmental controversies in Spain and China, to questions about “knowledge justice,” citizenship, participation, and data in citizen science surrounding toxicity. The book features inspiring studies of community-based participatory environmental health and justice research; different ways of sensing, witnessing, and interpreting environmental injustice; political strategies for seeking environmental justice; and ways of expanding the concepts and forms of engagement of citizen science around the world. While the book will be of critical interest to specialists in social and environmental sciences, it will also be accessible to graduate and postgraduate audiences. More broadly, the book will appeal to members of the public interested in social justice issues, as well as community members who are thinking about participating in citizen science and activism. Toxic Truths includes distinguished contributing authors in the field of environmental justice, alongside cutting-edge research from emerging scholars and community activists.
). One key area of consideration is patients’ involvement in novel kinds of adaptive clinical trials that create moral, epistemic and commercial value through the continual negotiation of best possible futures for patients as individuals and as a collective (Montgomery 2017a; 2017b ). We investigate the rise of ‘experimental patients’ in molecular oncology; patients who are actively involved in crafting treatment regimes together with healthcare professionals, including as research participants. We will also explore how patients, including
challenges notions of universality by revealing global health to be a matter of practices under constraint. Oncology at the periphery, as opposed to, say, in New York, inevitably involves a cancer epidemic, which does not fit the global agenda of oncology research and treatment. The nature of this epidemic challenges the once-dominant idea of an epidemiological transition from infectious to chronic disease according to which low-income countries would eventually exhibit the same patterns found earlier in the industrialized North. Cancer cases in Botswana tend to develop
’ (Tutton, 2014 ), this is an emerging but still mainly promissory dimension of genomic health care. It has nevertheless been made most visible in the field of oncology, at the ‘tangled intersection’ (Keating and Cambrosio, 2013 ) between translational research and clinical care. It is a meeting point which entails transformations not only in the expanded ‘biomedical collectives’ (Bourret, 2005 ) that now coalesce around the field of cancer genetics but also in cancer patienthood, described by Kerr and Cunningham-Burley ( 2015 ) as ‘embodied innovation
-related diseases were regarded by my interlocutors as much more serious issues. Even today this remains the case, as was shown by Julie Livingston ( 2012 ) in her description of the only oncology ward in Botswana, which is underfunded and overcrowded, when the efforts of the international medical community are principally concentrated on HIV prevention and treatment. On the other hand, the work of scientists in general and of life scientists in particular in poor countries or poor communities often consists in a form of extraction, when it is not sheer
benchmarking, i.e. a systematic comparison rendering visible the relative performance. Once the relative differences in (quantified) performance are made visible, we see the emergence of new ways of assessing the quality of public services and of delegating responsibility (Kouzmin et al., 1999; Triantafillou, 2007). For example, an oncology department that displays relatively long waiting time for diagnostics or low levels of curing for a particular form of cancer – compared to other oncology departments – will now be made responsible for improving the so-called quality of
. As we discussed in Chapter 1 , randomised control trials (RCTs), the ‘gold standard’ of evidence-based medicine, have been superseded by what Keating and Cambrosio ( 2011 ) describe as a ‘new style of practice’ in medical oncology, based on large trials across multiple sites to develop targeted therapies for subtypes of cancers based on genomic profiling. Multi-arm trials test several different treatments at once. If a particular drug is not proving efficacious the trial arm can be closed and new treatment arms brought in (Medical Research Council 2014 ; West