What can the medical humanities achieve? This paper does not seek to define what is meant by the medical humanities, nor to adjudicate the exact disciplinary or interdisciplinary knowledges it should offer, but rather to consider what it might be capable of doing. Exploring the many valences of the word ‘critical’, we argue here for a critical medical humanities characterised by: (i) a widening of the sites and scales of ‘the medical’ beyond the primal scene of the clinical encounter; (ii) greater attention not simply to the context and experience of health and illness, but to their constitution at multiple levels; (iii) closer engagement with critical theory, queer and disability studies, activist politics and other allied fields; (iv) recognition that the arts, humanities and social sciences are best viewed not as in service or in opposition to the clinical and life sciences, but as productively entangled with a ‘biomedical culture’; and, following on from this, (v) robust commitment to new forms of interdisciplinary and cross-sector collaboration. We go on to introduce the five other articles published in this special issue of the journal, reflecting on the ways in which collaboration and critique are articulated in their analyses of immunology, critical neuroscience, toxicity, global clinical labour, and psychological coercion and workfare. As these articles demonstrate, embracing the complex role of critical collaborator—one based on notions of entanglement, rather than servility or antagonism—will, we suggest, develop the imaginative and creative heterodox qualities and practices which have long been recognised as core strengths of the medical humanities.
argue that "experimental care" in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018-2019 study of experimental breast cancer care in an urban clinical setting in the light of two other studies in the same hospital group: in the same cancer service (2013-14) and, prompted by these earlier findings, an interview study in HIV services . We found that patients and staff anticipated better outcomes by treating sub-types of breast cancer but they also hoped for a better one-size-fits-all approach, akin to the antiretroviral treatments introduced for HIV and explored in our interview study. We conclude that the promise of targeted treatment for sub-types of diseasevariously described as experimental care, personalised, precision, stratified and subgroup medicineis accompanied by hopes for a single, standard, effective approach.
Genomic science is increasingly central to the provision of health care. Producing and applying robust genomics knowledge is a complex endeavour in which no single individual, profession, discipline or community holds all the answers. Engagement and involvement of diverse stakeholders can support alignment of societal and scientific interests, understandings and perspectives and promises better science and fairer outcomes. In this context we argue for F.A.I.R.E.R. data and data use that is Findable, Accessible, Interoperable, Reproducible, Equitable and Responsible. Yet there is a paucity of international guidance on how to engage publics, patients and participants in genomics. To support meaningful and effective engagement and involvement we developed an Engagement Framework for involving and engaging participants, patients and publics in genomics research and health implementation. The Engagement Framework is intended to support all those working in genomics research, medicine, and healthcare to deliberatively consider approaches to participant, patient and public engagement and involvement in their work. Through a series of questions, the Engagement Framework prompts new ways of thinking about the aims and purposes of engagement, and support reflection on the strengths, limitations, likely outcomes and impacts of choosing different approaches to engagement. To guide genomics activities, we describe four themes and associated questions for deliberative reflection: (i) fairness; (ii) context; (iii) heterogeneity, and (iv) recognising tensions and conflict. The four key components in the Engagement provide a framework to assist those involved in genomics to reflect on decisions they make for their initiatives, including the strategies selected, the participant, patient and public stakeholders engaged, and the anticipated goals. The Engagement Framework is one step in an actively evolving process of building genomics research and implementation cultures which foster responsible leadership and are attentive to objectives which increase equality, diversity and inclusion in participation and outcomes.
Using interview and observational data from a busy and research-intensive breast cancer service in the United Kingdom, we discuss recent developments in personalised medicine. Specifically, we show how clinical and research practices meet in clinical pathways that are reconfigured in response to changing approaches of diagnosing, monitoring, treating and understanding cancers. Clinical pathways are increasingly sensitive to changes in evidence deduced through new technologies and therapies as well as decisions based on intensive, iterative analysis of data collected across a range of platforms. We contribute to existing research by showing how the organisation of clinical pathways both maintains established clinical practices and responds to new research evidence, managing a threshold between evidence-based and experimental medicine. Finally, we invite comparisons with other forms of personalisation to understand how they depend on the 'real time' collection, analysis and application of data.
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