Fay Bound Alberti writes about hosting the AboutFace Policy Lab, to address policy and practice in face transplantation.
In 2019, I became one of the first UKRI Future Leaders with my project AboutFace, an interdisciplinary exploration of the history, emotions, and ethics of facial transplantation. As part of my bid, I committed to host a Policy Lab, in collaboration with King’s Policy Institute, to explore the ethical, social, psychological and practical challenges around face transplants. This seemed important because though I was approaching the subject through a historical lens, the issues involved were live, and involved living patient experience, the construction of disability, the politics around hospital funding and the problems and challenges of surgical innovation.
So why a lab? This might not seem the most obvious port of call for a historian, even a contemporary historian. Policy labs provide a way to bring together a wide range of people with different values, experiences, and perspectives. With expert guidance and mediation, a lab can facilitate consensus even in the stickiest of circumstances. Ordinarily, policy labs are convened to bring together knowledge producers, including academics, and policymakers, practitioners, and the public to collect evidence towards, and facilitate, the formulation and evaluation of government policy.
The platform, then, is well established, and policy labs provide a collective space for open discussion and evidence sharing, one which, well-moderated, can highlight the issues that are most pressing regardless of perspective. Unlike most labs, the AboutFace lab wasn’t set up to facilitate or advise on policy change. We were less concerned about making the case for face transplants to happen or not happen in the UK than we were about ensuring all voices were heard, including those that are normally excluded from debate: people living with facial difference. We were aware that within the medical profession there was a great deal of rumour and speculation about why a face transplant hadn’t happened yet in the UK, even though the UK was poised to undertake the world’s first, before it was gazumped in 2005. I was also aware from my oral history interviews that media speculation around facial transplantation, including the harassment of key individuals living with facial difference, had impacted negatively on people’s lives. Moreover, the notion of face transplants carries with it both misunderstanding about what is involved (best characterised by the John Woo film Face/Off) and a climate of prejudice against those who have visible facial difference (as demonstrated by the scarred faces of Hollywood’s ‘baddies’.)
What we planned, in order to ensure medical humanities research was at the heart of the agenda, was a lab with a difference: one that allowed us to explore the sociohistorical meanings of faces as emotional parts of the body, that encouraged a social rather than a medical interpretation of ‘disability’, that asked surgeons to consider more than anything else the importance of patient-reported outcome measures (known by psychologists as PROMs), and how the broader context of facial prejudice might feed into the apparently objective decisions being made by surgical teams.
With Niall Sreenan at King’s Policy Institute, and Ross Pow from Power of Numbers, we developed a framework for the lab that was based on ‘sustainability’; what might a sustainable approach to face transplants look like?’ We took sustainability to include not only the financial challenges that came up in the research, but also psychological sustainability (for patients, their families and donor families); in clinical practice; in ethical and social attitudes (given how challenging the idea of face transplants are for many people) and the long-term impacts on everyone involved. This has wider implications for medical humanities more generally of course, as sustainability is becoming a core concept in understanding how high-quality care is delivered in ways that don’t damage the environment and deliver positive social impact. It is a holistic vision in which best practice in health care is delivered with a recognition of the complex psychological, institutional, and social contexts in which medicine is conceived and delivered. We wanted to make sure that decisions about face transplants are made in ways that promote equality, diversity, and inclusion; transplantation for historical reasons has been skewed against people of colour, for instance, because of the legacy of slavery and its impact on scientific racism. Lower levels of black people donating organs for completely understandable social reasons, means that there are fewer organs available for black people, including donor faces. And understanding the legacy of injustice that is built into medical systems is critical in ensuring the sustainability of those systems.
Sustainability also means ensuring a long-term approach to health care which, unfortunately, is often at odds with both innovation, and the fast-paced desire to do something new within healthcare, and the financial realities of short-term goal-related funding. Sustainability in ethical decision making is also an issue that has historically caused conflict in medical settings. In life-and-death situations, surgeons must make decisions in emotionally intense moments, a theme explored in Roger Kneebone’s book, Expert. It is the job of medical humanities research, in my view, to explore the ways in which surgeons make those decisions, recognising that they are human actors with their own agendas and ambitions, and not mere robots. At the same time, patients necessarily place their trust in those surgeons as if they were devoid of emotion and able to make decisions that are always, pragmatically, correct. When it comes to facial transplantation, where many uncertainties remain, and surgical reputations can be won or lost by making decisions on very little evidence, it is not only individual lives and careers but entire fields of research that are at stake. Face transplants in the US have been funded by experimental grants made by the military, and those grants are drying up. The pressure is raised, then, for surgeons to go above and beyond, to be daring and to deliver, in ways that they might not act, given a long-term and sustainable funding pattern.
In our lab then, we asked surgeons from all around the world how best they might address the complex psychological, social, ethical, and financial aspects of facial transplantation, and how medical humanities concerns might enhance surgical decision making. We found a heartening level of agreement across the board, with surgeons recognising that standard surgical measurables – whether a graft survived, what kinds of functionality a new face had for the patient – are not the same as, or necessarily even as important as, the complex and harder to measure variables of human experience. A surgeon might regard a hand transplant as successful if the patient can open a door. That is sustainability of function. But what happens if that same patient cannot touch his partner, or feels that the hand doesn’t really belong to them? That’s what happened to the first hand transplant recipient, Clint Hallam, who asked that his transplanted hand be removed.
There are many ways of measuring ‘success’ in transplant surgery, and in measuring the sustainability of face transplants. It is here that medical humanities can enrich and develop our understanding of the boundaries of the human body as well as medical practice. In collaboration with surgeons and extended medical teams, the qualitative approaches of AboutFace – drawn from anthropology, sociology, psychology, history, and literary studies – are supporting more intensive understandings of how potential patients and donors might experience the lived realities of facial transplantation. They are also helping surgeons to appreciate how cultural prejudices around appearance, and the divergencies of race, gender, and ethnicity, are manifested in society, and in the operating theatre.
Our findings are published in a Blueprint that is available through our website. We are continuing to work with surgeons to support international collaboration and agreement, and to show the ways in which medical humanities can help shape as well as critique, surgical innovation and medical treatment. For more information, and to help us develop our research, please get in touch via the AboutFace website: www.aboutfaceyork.com.
About the Author
Fay Bound Alberti is Professor of Modern History at the University of York and a UKRI Future Leaders Fellow.
References
Bound Alberti F. From Face/Off to the face race: the case of Isabelle Dinoire and the future of the face transplant. Medical Humanities. 2017 Sep;43(3):148-154.
Bound Alberti F., Hall S., Pow R., Sreenan N. & Ridley, M. ‘A Blueprint for Sustainable Face Transplant Policy and Practice’ 2022.
Bound Alberti F., Hoyle V. ‘A Procedure Without a Problem’, or the face transplant that didn’t happen. The Royal Free, the Royal College of Surgeons and the challenge of surgical firsts’ Medical Humanities, 2021.
Bound Alberti F., Ridley M., Herrington E., Benedict J. L., Hall S. ‘What we still don’t know about vascularized composite allotransplantation (VCA) outcomes and quality of life measurements’, Transplantation Reviews, 36 (3), 2022.
