About face: The affective and cultural history of face transplants

We are at a critical point in the UK where face transplants are technically viable, yet have not yet happened. Since 2005 there have been fewer than 50 face transplants across the world, yet their cultural impact outweighs their number. The face is a highly emotive, visible organ, connected to identity, inheritance, communication and perceptions of beauty (Bruce and Young 2012). No face transplant has yet happened in the UK for reasons that are financial as well as ethical; the Royal College of Surgeons placed a moratorium on them in 2004, though they have become increasingly common internationally, and the NHS views them as life-enhancing, rather than life-saving (and therefore not essential). But face transplants need to be viewed through a much longer lens that includes not only the history of psychological and social responses to disfigurement, including the horror and disgust shown towards disfigured people, but also the registers in which medical innovation have been framed (as 'Frankenstein science'), the emotional experiences of extended surgical teams, and the emotional experiences of face transplant recipients and recipient/donor families. By studying the history of face transplants in the US and the move towards face transplants in the UK, this project engages arts and humanities research with surgeons and their extended medical teams to create a revised psychological framework that can be used to support ethical policy and clinical practice.

This historical project therefore has key implications for human health and flourishing, and the ways surgical innovation is framed and understood. It will build an evidence base of historical analysis and qualitative interviews with surgeons and people affected by face transplants, to show how and why emotion and identity has historically become attached to the face. It will chart what cultural anxieties around face transplants reveal about anxieties over medical innovation as well the interaction of the individual with the social world. Using a framework of emotion history to think through the cultural presumptions associated with face transplants as an act of 'transformation', it will show how emotion language manipulates the framing of face transplants. In the process of making face transplants mainstream, for instance, families and friends of dead donors have been wheeled out on international television to respond to the re-purposing of their loved one's faces, with deliberate emotional impact on viewers and apparently no regard for the ethical responsibilities of producers or the psychological and social effects. The emotional consequences for transplant recipients, as well as donor families, and extended surgical teams who are undertaking challenging and life-changing surgeries, have been virtually ignored.

About Face will show that face transplants are inherently emotional procedures, and that their emotional impact needs to be incorporated into clinical and policy discussions. From their framing in popular media to films and books dealing with face transplants as a terrifying or freakish prospect, from the identification of a suitable donor to the rehabilitation of a post-operative patient, emotions impact on each stage of facial transplantation. The emotional and social effects on recipients and their families are clear in the secondary literature and implied in the emergence of psychological protocols since the 1950s. It is time to put these centre stage. Bringing together arts, humanities and social science researchers with extended surgical teams and people living with disfigurement, this project will create a framework by which clinicians and policy makers can engage with face transplants as an emotional and concern. It will thus contribute to the framing and practice of innovative surgical practice, and human health, in the 21st century.

Beneficiaries of impact:

1. Extended surgical teams. Two major face transplants surgeons in the US and one facial reconstruction specialist in the UK, and teams of twenty who work with each (as physiotherapists, nurses and anaesthetists) will be directly benefitted by the evidence that face transplants are psychological and social processes, not merely medical events. The patients, researchers and clinicians working with these individuals will subsequently be benefitted by the ripple-effect by which an awareness of affective and cultural impact becomes embedded into clinical practice. This interdisciplinary knowledge exchange will be a goal in developing historically- and emotionally-informed protocols that guide innovative surgery. A rigorously researched emotional framework will also encourage and enable the UK to compete with and alongside other surgical innovators around the globe by supporting the development of the country's first face transplant. The project's knowledge-transfer practices between arts, humanities and social science and medical researchers will support this aim, as will the project's comparative focus on the UK and the US in the first four years, and the Anglo-American context and China in years 5-7.

2. The interested public, who will be encouraged to learn about, and contribute to, discussions about facial disfigurement and transplantation that are not shaped by the tabloids, or clinical literature, but through ongoing, open discussions that include policy-makers, surgical teams and disfigured people themselves. There are few spaces where public engagement in the meanings and practice of surgical innovation, or the impact on individual patients and their families, are discussed. This project provides these spaces through participation in the SGL Spare Parts season, a workshop around disfigurement, beauty and transplantation, an immersive surgical reenactment series, and a film evening tackling the stereotypes around transplantation. These events bring together surgeons, psychologists, ethicists and members of the public, targeted as noted in the Pathways to Impact: e.g. 18-25 year olds visiting SGL; older adults visiting Imperial War Museum; working with Changing Faces and other patient groups. The PI will work to engage with a wider variety of audiences through the project website and digital networks, seeking media coverage via BBC Radio 4 content providers, popular publications such as the Metro newspaper, and an active blogging network. Artists and writers connected to these events will benefit by having their work seen and discussed; disfigured people working with patient groups will benefit from having a voice and an outlet through which public perceptions of disfigurement and transplantation can be debated and challenged. This will, as the charity Changing Faces recognises, have a positive impact on the lives of those who live with stigma and create awareness of the emotional effects of disfigurement and surgery.

3. This project further seeks to influence policy around face transplants in the UK, and to benefit those who shape it. The creation of new and freely available data (e.g. 200 interviews from clinicians; 500 from public engagement events; 100 from patient groups and 200 from online questionnaires) will provide evidence on how the affective and cultural history of face transplants have influenced their ethical framing as problematic by the Royal College of Physicians, and the NHS's refusal to fund the procedure (largely because it is seen as life-enhancing rather than life-saving). The PI will collaborate with King's Policy Institute on three Policy Labs in years 1-3 to bring together stakeholders (disfigured people, surgeons, ethicists and policy makers) to identity key emotional and societal barriers to face transplants and to produce recommendations for the Royal College of Surgeons, the Nuffield Institute for Bioethics and the Parliamentary Office for Science and Technology