Abstract
The growth of personalised medicine and patient partnerships in biomedical research are reshaping both the emotional and material intersections between human patients and animal research. Through tracing the creative work of patients, publics, scientists, clinicians, artists, film-makers, and campaigning groups this chapter explores how ‘patient voices’ are being rearticulated and represented around animal research. The figure of ‘the patient’ has been a powerful actor in arguments around animal research, mostly ‘spoken for’ by formal organisations, especially in publicity material making ethical justifications for the need and funding of medical research. Here, patient voices make corporeal needs legible, gather expectations and resources, and provide the horizon for embodying future hopes. However, the accessibility of digital media, alongside local institutional experiments in openness, is creating alternative spaces for voicing patient interfaces with animal research. On research establishment websites, and elsewhere, patients’ perspectives are emerging in short films, taking up positions as narrators, tour guides, and commentators, inviting the public to follow them into these previously inaccessible spaces. The embodied experience of patients, sometimes severely affected by the current absences in biomedical research, are used to authorise their presence in these places, and allow them to ask questions of animal researchers. The films are powerful and emotional vehicles for voicing patient experiences and opening up animal research. They also refigure the affective responsibilities around animal research, resituating a public debate around ethics within the body of the patient. The future expectations personified in the abstract figure of the patient, are rendered turbulent in the ambiguous corporeal encounter between human and animals undergoing similar experiences of suffering.
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Notes
- 1.
https://vimeo.com/33170755, last accessed 24/09/2018.
- 2.
‘Patient’ is a complex, dynamic and relational category, contestable and temporally located, sharing boundaries and imbrications with other advocacy movements (Epstein 2008). Here, our use of ‘patient’ is as a gateway to consider the entanglements of a wide range of people with animal research, and consider how people’s experiences of, and encounters with, disability and illness acts to influence attitudes to animal research. The growing transparency of animal research produces new entanglements and knowledges, producing an arena of debate amongst all those who are directly or indirectly involved in such networks (Callon and Rabeharisoa 2004).
- 3.
This research is part of the wider Wellcome Trust collaborative award on the Animal Research Nexus (205,393/Z/16/Z). This programme explores the changing historical and social relations around animal research from different perspectives, including the growth of patient and public involvement and engagement within the practices of animal research. For further information see https://animalresearchnexus.org/ (last accessed 28/09/2018).
- 4.
Our professional and personal backgrounds are diverse: spanning veterinary science, art, human geography, policy, gender, sexuality and experiences of acute and chronic illness. We do not name the different descriptions of films that we have authored. Whilst patient voices have the potential to radically remake these interfaces around animal research, this will not be achieved through allocating meanings in ways that promise the authenticity, fixity or the singular truth of voice.
- 5.
https://www.youtube.com/watch?v=F8fDYCEEE0Q, last accessed 24/09/2018.
- 6.
https://www.youtube.com/watch?v=j2RRnwtnsjw, last accessed 24/09/2018.
- 7.
https://vimeo.com/118265337 – last accessed 24/09/2018.
- 8.
https://www.youtube.com/watch?v=NGr44gjkoxc last accessed 24/09/2018.
- 9.
Davies and Gorman are doing further in-depth interviews and ethnographic work, as part of the Animal Research Nexus programme, with engagement professionals, researchers, patient groups and publics to understand how PPI may be able to engage meaningfully around animal research. We would like to thank those medical research charities, communications organizations and research institutions whose conversations have informed our reflections in this chapter here.
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Davies, G., Gorman, R., Crudgington, B. (2020). Which Patient Takes Centre Stage? Placing Patient Voices in Animal Research. In: Atkinson, S., Hunt, R. (eds) GeoHumanities and Health. Global Perspectives on Health Geography. Springer, Cham. https://doi.org/10.1007/978-3-030-21406-7_9
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