About face: The affective and cultural history of face transplants

Lead Research Organisation: University of York
Department Name: History

Abstract

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.

Planned Impact

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
 
Title Clare Whistler 
Description We worked with the performance artist Clare Whistler on the AboutFace launch, and she subsequently provided a poem that was made available for the project website. 
Type Of Art Performance (Music, Dance, Drama, etc) 
Year Produced 2019 
Impact It is too soon to tell whether there will be longer term impacts; this was the first time we had worked with the artist for the project. 
URL https://aboutfaceyork.com/reflections-of-the-aboutface-event/
 
Title Introduction to AboutFace film (dir. Barry Gibb) 
Description A film shot and edited by filmmaker Barry Gibb as part of the AboutFace launch. 
Type Of Art Film/Video/Animation 
Year Produced 2019 
Impact The film has been used to publicize the project and has accompanied press releases. 
URL https://vimeo.com/369575227
 
Title Louisa Young 
Description The award-winning writer Louisa Young contributed to the AboutFace launch with a talk and a reading. She has written four books that relate to facial damage and is an ongoing partner on the AboutFace project. 
Type Of Art Performance (Music, Dance, Drama, etc) 
Year Produced 2020 
Impact We are at the beginning of a longer collaboration and the impacts will be easier to assess as the project progresses. 
URL http://www.louisayoung.co.uk
 
Title Lucy Burscough 
Description We are collaborating with Lucy Burscough and the surgeon Roger Kneebone on an exhibition about surgical skill to be held in Manchester at the Whitworth Gallery. This will explore many of the themes of the project and will be a public event. 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2020 
Impact The event has not yet been held, but is currently being planned. We hope to have an update by the summer. It may take place in 2021. 
URL https://www.lucysart.co.uk
 
Description Important new research questions opened up
There is no comparative data collected on the outcomes of face transplants around the world or even within the US. There is also an emphasis on qualitative rather than qualitative reporting. AboutFace seeks to change that by creating a globally recognisable way of assessing emotional impacts.

New or improved research methods or skills developed
The benefits of interdisciplinary and qualitative research methods is becoming clear across the range of partnerships developed in this project.

Important new research resources identified
New interview data will be generated for the first time with lived experience participants, and on surgical teams about the historical emergence and emotional challenges of their work.
Exploitation Route We hope to develop a framework, in collaboration with our overseas and UK partners, by which the emotional impacts of living with facial difference and undergoing facial transplant can be assessed. So there are clinical and patient outputs, as well as broader familial and social outputs. We also aim to transform the historical and sociological framework by which we understand face transplants as a form of medical innovation, and demonstrate new pathways by which interdisciplinary collaboration might be managed.
Sectors Communities and Social Services/Policy,Healthcare

 
Description The project as it has evolved has supported the successful Arts Council funding application of Lucy Burscough's project 'Dab Hands', on which AboutFace will be a collaborator.
First Year Of Impact 2020
Sector Creative Economy
Impact Types Cultural,Societal

 
Description YouGov survey undertaken on public attitudes to face transplant
Geographic Reach Europe 
Policy Influence Type Influenced training of practitioners or researchers
URL https://yougov.co.uk
 
Title Qualitative analysis using emotion history methodologies 
Description Tangible new tools or methods generated by your research team (including e.g. a novel technique, a research questionnaire or observation form) We are developing qualitative methodologies to examine the cultural and emotional impact of face transplants, using methodologies and tools drawn from emotion history. This work will offer a critique of, and an improvement to, existing Quality of Life measurements used to established psychological protocols. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2020 
Provided To Others? No  
Impact This work is in progress and informing our data collection in interviewing and analysis. It will be shared with our clinical and academic partners and included in publications and public engagement work. 
 
Title AboutFace database 
Description We are in the process of developing a database of data collected via the YouGov survey an interviewing. We are using NVIVO software. Part of the database will be available to others, subject to the non-disclosure regulations around interviewing and the privacy of patients and medics, as per our NHS Ethics approval. 
Type Of Material Database/Collection of data 
Year Produced 2020 
Provided To Others? No  
Impact This is an ongoing process at an early stage. 
 
Title International Face Transplant Database 
Description A database of face transplant recipients, face donors and surgical staff engaged in face transplant internationally. This includes demographic, biographical and outcomes data. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? No  
Impact The database is at an early stage of development, but we anticipate that it will form the basis of publications and could become a single authoritative source of information on face transplant internationally. 
 
Description Brigham and Women's Hospital, Boston 
Organisation Brigham and Women's Hospital
Department Department of Medicine
Country United States 
Sector Hospitals 
PI Contribution We are working with the face transplant team on shaping the questions asked of face transplant patients and candidates. This is a two-way process, where we are using our YouGov survey results and our work on the cultural meanings of facial difference and transplantation to adjust the ways surgical teams use Quality of Life metrics in assessing clinical psychological outcomes.
Collaborator Contribution Brigham and Women's Hospital is a centre for face transplants and the clinical team has shared with us their data collection process and questions asked. We will be visiting the team in August 2020 to conduct a series of interviews with key personnel and the families of patients.
Impact Ongoing - results will include significant new data on patient and family experience and the clinical method by the end of the summer.
Start Year 2020
 
Description Cleveland Clinic 
Organisation Cleveland Clinic
Country United States 
Sector Hospitals 
PI Contribution We have been in discussions with Cleveland Clinic since the end of 2019, and have shared with them our research protocol and objectives. We are also sharing with the clinic our developing perspective on the emotional impacts and quality of life for people living with facial difference and face transplants. This brings a new critical perspective to a clinical problem: how to evaluate the medical impact of facial difference and transplantation.
Collaborator Contribution Our partners are sharing with us their psychological protocols, history and development of face transplants in Cleveland Clinic (and in collaboration with Maria Siemionow, previously at Cleveland Clinic and now in Chicago). We will interview carefully identified members of the extended surgical teams and patients, and engage with the patients' families where possible.
Impact Multi disciplinary - involving surgeons, prosthetists, psychologists, psychiatrists, nurses, sociologist, people with lived experience and historians.
Start Year 2019
 
Description Helsinki University Hospital 
Organisation Helsinki University Hospital
Country Finland 
Sector Hospitals 
PI Contribution AboutFace will input into the continued development of face transplant protocols in Finland, focusing specifically on psychosocial screening and outcomes.
Collaborator Contribution Colleagues in the face transplant programme at Helsinki University Hospital will share their knowledge and expertise relating to the two successful face transplants they conducted between 2017-2019, and their ongoing work in this area.
Impact There have been no outcomes as yet. The first visit to these collaborators is planned for May 2020.
Start Year 2020
 
Description Leeds 
Organisation Leeds General Infirmary
Country United Kingdom 
Sector Hospitals 
PI Contribution We are sharing our research protocols and objectives in order to locate the emergence of Hand transplants as a cultural and emotional process (and as a form of VCA alongside face transplants) in the UK. This will be a historical perspective, in the first instance, which is lacking in the UK and global context. And it will contribute an important historical framing for the evaluation of psychological protocols and transplants at the Leeds Hand Transplant Unit.
Collaborator Contribution Our Leeds partners are sharing with us their insights and experiences of leading hand transplant work in the UK, a development that has key parallels with the emergence of face transplants as a form of VCA general. We will be interviewing the teams and potentially members of the public who have engaged with the Leeds services as friends and supporters of transplant patients.
Impact Data will be collected through interviews and engagement with the Leeds transplant team, and this data will provide the evidence for a series of publications. Multi disciplinary including surgeons, nurses, psychologists, transplant professionals, sociologists and historians. Additionally we will be contributing to the Thackray Medical Museum's work on transplantation, in collaboration with Simon Kay, the leader of the Leeds team. This will include the part of a multi-disciplinary collaboration from our side with the surgeon and public engagement specialist Roger Kneebone and the artist Lucy Burscough.
Start Year 2019
 
Description Royal Victoria Infirmary Newcastle 
Organisation Royal Victoria Infirmary
Country United Kingdom 
Sector Hospitals 
PI Contribution Daniel Saleh, Declan Murphy and David Sainsbury have worked with us on the development of a YouGov survey to assess public attitudes to face transplant. This has not been done before and is an exciting new kind of interdisciplinary collaboration. We will be writing a collaborative article with the surgical team for the Lancet. My team undertook the framing of questions, with the assistance of the project advisory board and lived experience group, and we analysed the qualitative data. We also funded the survey through the AboutFace project. We are undertaking three months of data collection at Newcastle between March 2020 and March 2021. This will include patients and their families and extended surgical teams.
Collaborator Contribution Our clinical partners proposed the original set of YouGov questions based on patient experience and the team's attempts to develop face transplants in the UK. They also handled the statistical analysis of the outcomes and co-authored an article for the Lancet. The team also helped develop our NIHR profile and collaborations, and are assisting in the identification of patients for interview, as well as agreeing to be interviewed in their own right. They are additionally supporting our work with transplant nurses and NHS Blood and Transplant. Newcastle is one of seven UK sites we are partnering with for this study, and for which we have NHS and university ethics approval (the others are hospitals in Swansea, Manchester, London, Glasgow, Leeds and NHS Blood and Transplant).
Impact Multidisciplinary collaboration, involving historians, surgeons, psychologists, prosthetists, sociologists and ethicists as well as people living with lived experience of facial difference. Outputs include an article for Lancet in progress (co-written with the surgical team) and another in process that explores challenges in interdisciplinary working (to be submitted to BMJ Medical Humanities by the summer). Original data from 2000 people has been created, and this will be stored in keeping with the UKRI and University of York data requirements. The data and its analysis will help shape the questions raised by the King's Policy Labs that will be undertaken via the AboutFace project in the summer of 2020 and it will help shape surgical approaches to the NIHR around the public impact of face transplant discussions.
Start Year 2019
 
Description AboutFace twitter 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The twitter account has 300 followers, and has provided an opportunity to connect with stakeholders in facial transplantation internationally. We aim to grow participation through this channel considerably with the appointment of a new Public Engagement Officer in mid March 2020.
Year(s) Of Engagement Activity 2019,2020
URL https://twitter.com/AboutFaceYork
 
Description AboutFace website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact A project website was designed for AboutFace, which includes information about the project and team, news, notifications of events and a regularly updated blog. We anticipate this will become the primary access point for information about the project as it progresses.
Year(s) Of Engagement Activity 2019,2020
URL http://www.aboutfaceyork.com
 
Description Aboutface Launch Event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact We held a launch event for the AboutFace project on 25 October 2019 and advertised the event widely via university networks, Twitter, professional networks and personal invitation. There was a panel presentation and discussion that involved historians, artists, writers, people with lived facial difference, surgeons and psychologists. Visitors were asked to complete feedback cards that considered the core question of the event: How do you feel about your face? We are working through the recorded outputs and have recruited a replacement public engagement person to assist with the analysis of impact. We also created a film of the event which we shared widely via our networks.
Year(s) Of Engagement Activity 2019
URL https://aboutfaceyork.com/research/videos/
 
Description Blog post on the ethics of transplantation 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The PI wrote a blog about the ethics of transplantation on her personal website www.fayboundalberti.com after which she received five emails asking for more information about the project.
Year(s) Of Engagement Activity 2019
URL https://www.fayboundalberti.com/blog/2019/9/21/9h6cume2i0fclrqn88vt57dix5dyb4
 
Description Foundation of Science and Technology Debate Note 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact The PI wrote a briefing note on a high level event on facial recognition technologies held at the Royal Society in her capacity as Foundation Future Leaders Fellow.
Year(s) Of Engagement Activity 2020
URL https://www.foundation.org.uk/getattachment/5712aeeb-fc01-4003-bab1-9ca61d49f333/29jan20-record-note...
 
Description Interview for National Post on Transplantation 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The PI was interviewed about the emotional meaning of transplantation, following the National Post's research into a breaking news story about neonatal organ donation.
Year(s) Of Engagement Activity 2020
URL https://nationalpost.com/news/canada/when-your-baby-needs-a-heart-it-means-waiting-for-another-child...
 
Description Interview for regional news BBC Radio Sheffield 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact The PI was interviewed by Radio Sheffield about the launch of the AboutFace project and the programme was taken up with asking callers to talk about their face - how do you feel about your face being the question posed by the launch.
Year(s) Of Engagement Activity 2019
URL https://www.bbc.co.uk/programmes/p07nvd80
 
Description New Thinking: About Face BBC podcast 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Participation in a BBC podcast with Des Fitgerald and Emily Cock. We have contacted the BBC to ask for more detailed information about audience figures and anticipated impact.
Year(s) Of Engagement Activity 2020
URL https://www.bbc.co.uk/programmes/p080p2bc
 
Description York Talks 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The PI gave a presentation at the York Talks series, which was well attended by the general public and recorded for online viewing.
Year(s) Of Engagement Activity 2020
URL https://www.york.ac.uk/research/events/yorktalks/