The Changing Faces of Childhood Cancer makes several fascinating and important contributions to the fields of medical history, modern British studies, the history of childhood, and medical ethics, among others. The book emerged from a Wellcome Trust grant about the history of cancer research and services in Britain since 1945 and is published within the Science, Technology and Medicine in Modern History series.
In many ways, the cultural and clinical histories of childhood cancer are stories of progress, success, and triumph. From the 1930s until the present day, childhood cancer has moved from a ‘hidden disease of which a few doctors had little knowledge, to a research hotspot, generously funded by governments and charities’ (11). Survival rates have greatly improved from around 30% forty years ago to over 70% today (182). The book illuminates and explores many interlocking factors underlying the improved treatment of childhood cancer. On the medical side, there were transnational collaborations between small teams of researchers; the centralisation of resources; the coming together of a new discipline, paediatric oncology; and the development of clinical trials. The authors underline the potential and significance of individual and disparate medical ‘pioneers’, and the ‘enormous transformative effects that even small research groups may have’ on clinical research (185). More broadly, progress in this area was also contingent on the raising of funds by government bodies, media, and charities both big and small (from the Teesside Leukaemia Fund to the British Empire Cancer Campaign). The book argues that this British story is unique, in terms of medical systems, specialisation, and the interaction between disciplines, but the authors also describe great regional and local variations in the ‘British story’, and situate their analysis internationally, in relation to ideas imported from America and continental Europe and, notably, the ‘tumour safari’ of the surgeon Denis Burkitt across Uganda.
The authors tease out moments of professional, clinical, and ethical tension which complicate a narrative of improvement in the identification, diagnosis, and treatment of childhood cancer. Whilst acknowledging that the development of co-operative clinical groups and their first clinical trials, for example, may in retrospect appear to have ‘an impressive orderliness’, Barnes Johnstone and Baines highlight the ‘frustration and exhaustion’ of clinicians involved (54). The book also assesses disagreement between clinicians, families, charities, and government agencies about how childhood cancer should best be managed and treated. In just one strand of this analysis, the authors show how clinical authority was challenged by the families of children with cancer, who sought out experimental and alternative treatments beyond the remit of NHS provision. Clinicians dealing with childhood cancer also faced numerous ethical dilemmas which continue to be pertinent today: around whether, when, and how to tell parents their child was dying; how best to help families of children in remission with uncertainty about their futures; and the morality of involving children in physically and emotionally challenging clinical trials. Indeed, the authors demonstrate that whilst clinical trials are ‘widely acknowledged as one of the greatest breakthroughs in medical history, [they] can appear very different to those on the inside’ (161). One great strength of this book is the way in which it combines such analysis of broad clinical, political, social, and cultural change with sensitive consideration of the personal and private effects of childhood cancer, recognising this as both ‘a transformed and a transforming illness’ (182).
The book also makes an important contribution to the history of childhood. As the authors recognise in their introduction, the voices of children are very hard to locate in historical sources, although, interestingly, the authors argue that childhood cancer ‘proves an exception’ because patients’ experiences were recorded by clinicians, families, and media (3). Barnes Johnstone and Baines rarely find direct archival traces of children’s memoirs, drawings, or letters, but rather capture children’s voices as mediated through the accounts of their parents and contemporary observers such as the anthropologist Myra Bluebond-Langner, who, having spent time talking to child leukaemia patients in hospital wards, published The Private Worlds of Dying Children in 1978 (154–6). Where no sources exist to capture the child’s perspective, the authors continually keep it in mind, for example asking of a five-year-old patient, whose treatment was recorded in medical journals: ‘Was she psychologically scarred by these experiences, or did she take them in her stride?’ (151). The authors also engage with broad debates about the nature of childhood as a distinct life stage, demonstrating that, until the 1940s, children were ‘not deemed different enough from adults’ to merit the development of a distinct profession for the treatment of childhood cancer (26–7).
Overall, this is a very valuable book, making timely and significant interventions into many fields in the medical humanities and social sciences. The authors also briefly describe how they hope that their historical review will ‘help shape current debates about what childhood cancer now is and can become’ (185); an important proposition which, I hope, they will further develop in subsequent outputs.
