On 28th April, the Vital Circulations Network hosted our second symposium on the theme of tissue donation. It is the second symposium in a series of symposiums that investigate vital circulations and how it intersects with social hierarchies and boundaries. Our first symposium was on Biomes, Bodies and Buildings, and in July we are having our third symposium, on Vital Data (sign up here).
I really enjoyed this symposium on tissue donation (partly because it took place the day after my viva so I got to attend it with a sense of relief!), especially because of its interdisciplinary reach – an exquisite dialogue between anthropology, law, and art. It is such a treat! The speakers took us through various sites of tissue circulations from cadaver donations to embryo adoption, looking at the social dimensions of tissue donations in a range of international contexts, including Europe, the US, South America and Asia. I have to admit that I knew very little about this topic before this symposium and this symposium really showed me the complexities of this issue and the interconnectedness of us as human beings in this day and age.
Nik Brown’s opening of the symposium introduces us to the Vital Circulation framework and throws out some thought-provoking questions :
‘How does different vital/viral matter enact different kinds of relationships and social imaginaries as it circulates across bodily and social boundaries?’
‘How do particular bodies and things get marked, classified and separated in the biomedical governance of vital circulations?’
‘What kinds of knowledge, ethics, affects and practices are generated to accelerate, monitor or block these circulations in the name of ‘health’?’
Those are central questions that the network is interested in and are the focus of our symposiums. All of the talks at this symposium speak to these questions in one way or another, feeding into ways of interrogating vital circulations and the relationalities.
After Nik’s opening, Jieun Kim & Marie-Andrée Jacob talked about ‘Troubling Tissue Donations’. Jini talked about the way tissue donation plays a central role in health care and biomedical research and the way the idiom of “the gift of life” is often touched on in calling the public to take part in the endeavour of tissue donation. Jini troubled the idea of the gift, and “how virtues of gift and sharing coexist with (or conceal) mechanisms that render bodies as sites of value creation and extraction.’ It does not escape from social categories and hierarchies. Therefore, in the discourses on “life”, of saving life – there is an abstracted life versus the singular life – the individual life invariably get caught up in categories such as sex/gender/sexuality, race/ethnicity. Jini talked about the way current academic discussion aims to go beyond binaries, of gift and commodity, life and death, human and non-human, and self and other. Jini and Marie’s talk next moved on to the mundane objects in tissue donation and the role they play. They talked about donor cards in particular. Donor cards are seen as connective materials drawing donors into circulations of tissues, enacting different relationalities, and sometimes seen as objects of pride that individualise the donor. The example Jini gave concerning the cards collected by fans of the K-pop group Girls Generation is quite fascinating! Marie also talked about the issue of consent in donor cards and the way in the context of the Organ Donation (Deemed Consent) Act, where consent is treated as ‘not opting out’.
(Material objects and their connections to vital circulations is a theme the Vital Circulations network is quite interested in and we have a series of blogs on it. Check our range of blogs on different objects on this website!)
For our talks that follow, we started from death. Jessie Cooper gave a talk on ‘Re-making boundaries between patient and potential organ donor: The case of organ donation after circulatory death in the UK’. Jessie talked about the controversy of controlled organ donation after circulatory death (DCD) since it raises questions about the role of medicine in taking care of dying patients. Jessie’s ethnography study of DCD in the everyday practice of the clinic shows a blurring of boundaries between providing end-of-life care and facilitating organ donation in this instance, and this raises a range of considerations concerning the timing of withdrawal of treatment and whether sedatives are given. Most importantly, there is negotiation of spaces. Jessie shows that in the everyday practice of the clinic, DCD is practised as the ordinary end of life care and different strategies are adopted to ‘re-assert boundaries between patient/donor and dying/death’. In particular, Jessie illustrates ‘a circuit’ when patients are taken to a separate room, where environments are set up, lights are dimmed in the room – a space is created and individualised to some extent to care for the dying patients and to respect their biographical stories. I was really moved by the complexity of the issue and the mundaneness of it in practice.
Next, Rachel Douglas-Jones gave a talk on ‘‘Silent mentors: Virtues of donation, education, and bodies in Taiwan’. It speaks beautifully to Jessie’s talk, in terms of the boundary between individuals and donors. Rachel talked about the way the biographical life of the cadaver donors are emphasised in the context of the Taiwanese Tzu Chi Buddhist Silent Mentor programme. Different from cadaver donation in the west which upholds anonymity, this programme in Taiwan retains the identity of the donors, and treats them as the “Silent Mentors”, their lives and stories becoming an important part of the teaching of future doctors. In this programme, students are encouraged to engage with the family of the deceased and career-long relationships between students and their ‘Silent Mentors’ are nurtured. I find this talk really fascinating as it brings me to rethink the relationship between medical students and the cadaver donors. Although I am not a medical student, I have heard of the phrase “大体老师 Da Ti Lao Shi” （cadavar teachers) from medical students on social media and had to google what it means, and seeing how this name come about and how the respect for donors intertwines with Tzu Chi virtues around recycling and re-use is really interesting.
After the two ethnographically rich talks, next we heard Anna Macdonald talk about ‘Ways of doing things (2021) and the choreography of consent’. Anna’s talk focused on her art performance Ways of doing things (2021). I was fortunate enough to be able to attend the one-to-one performance the day before and the performance was so much food for thought! I probably wouldn’t spoil the whole process, as this is a performance you should experience if there is ever a chance! Because of its one-to-one nature, it is such an intimate experience. At the same time, in some parts of the performance, I was watching a video and I wasn’t sure whether it was directed at me specifically and whether I was being recorded – the whole process made me think deeper about consent and about connection. In the performance, I was asked to mirror the movement of the hands of Anna. Trying to mirror her hand movements ended up being quite an intriguing experience – my hand movements were in no way the same as the hers, and what I see in real time and what I see on the screen are from a different perspective and thus actually uncannily different, and this made me think about how limited our perspective is and how embodied we are in this process of consent. In the movements I could feel the interconnectedness between my hands and Anna’s. In Anna’s talk, she talked about movement and stillness in the process of consent and her insights on movements and their relation to consent is so thought-provoking. She talked about how the gestures of raising hands are sometimes enacted as consent and sometimes we lean forward as anticipation of giving consent and I realised that I probably unconsciously made those movements during the one-to-one performance. What she talked about reminds of the agency of consent and its connection with the body, in movements, in stillness, in performance – whereas sometimes we might easily lose sight of this and see consent as just paperwork.
Recently, I received a unique link to my hand movement from Anna’s exhibition. When I used the unique number to find my own hand movements in the online collection, I came to the the wonderful realisation that my hand movements have become part of a larger collection that can be played against any other hand movements from people I do not know – it has attained new meaning and new relationalities. I am really amazed at the sense of connection between different hand movements in this collection (you can get a sense of it here).
In the following I have included some selected reflections from people who attended the conference that illustrate the beauty of this work:
Quote 1: ‘one thing I noticed how usually we forget about consent online once we’ve agreed to it. It verified how significant it is by being reminded’
Quote 2: ‘It was a lovely experience to move hands with someone that I have no previous relationship with and it is touching how much the hands can communicate. It touched me as poetic and also made me realise how amazing our hands are taking a huge part of the cerebral cortex and how we could use words less sometimes and just watch someones hands
thank you for this.’
Quote 3: ‘Such careful complexities held within this work and all brought into my own experience through live one to one performance. Many layers so beautifully and gently presented. Soft nudges activated my thinking and made me feel just the right amount of uncomfortable around consent. Honouring the process of giving and receiving! I am so pleased to have joined with of all those involved (including the credited trees!).’
Quote 4: ‘That was different. I’m a living donor and for me it was important to be part of the piece in some way:)
Yes, I feel we are often left out of the convo/movement’
After the lunch break, we returned to the afternoon session, and this time we turned to birth. Risa Cromer talked about ‘Mark(et)ing Race in US Embryo Adoption’. Risa looked at the racializing processes in embryo donation. She conducted ethnographic work in Christian embryo adoption programs, and unpacked strategies that have been utilised to “stabilise race”. She talked about the “marking” and “marketing” in the practices. Embryos are marked through categories, as having “race” or “special needs”. In this process of marking, embryos are made to “bear qualities that seem to inhere in them”. Following that, embryos are marketed to targeted audiences with the aim of “saving” frozen embryos. Risa situates her analysis within the discourses taken by white evangelical Christians and the white saviour complex. I did not know about the existence of such practices before, and Risa shows how race and religion are interconnected in this race-making practice. For me, this analysis of the “birth-making” process really illustrates how social dynamics penetrate every technology.
Next, Ciara Kierans took us to the context of Mexico and talked about ‘Organs-for-transplant in Mexico: the limits of biotechnical care’. She focused on Chronic Kidney Disease of Nontraditional Origin (CKDnt), which is when people suffer from failing kidneys and could not find explanations for those conditions. This disease happened to marginalized and disadvantaged communities who live near Lake Chapala, Central Mexico and is a result of complex structural and environmental issues beyond conventional aetiological terms. Ciara focused on and examined the social and environmental conditions that are associated with the emergence of this disease and looked at people’s efforts in seeking care and the moral, social and economic costs the patients and their families have to carry. In closely examining such cases, Ciara discusses the limit of biotechnical care for such “context-saturated” diseases and I find her account so moving.
Last but not least, we had Jessica Porter from Human Tissue Authority who talked about ‘The Existing Legal Framework and the Regulatory Challenges’. It is such a unique opportunity to hear from someone who works with the regulatory side of things to join this discussion on organ donation. Jessica talked about her day-to-day workflow in relation to organ donation and transplantation and talked about how it was set up, the requirements of the Human Tissue Act 2004 and the Quality and Safety of Organs Intended for Transplantation Regulations 2012 and how that reflects in the decision making of the practices in HTA and some of the challenges. For example, she mentioned the interpretation of words, such as transfer or transplantation, and where some new medical practices may not fit with the wording. Another thing is that the development of technologies may render organisational procedures obsolete. As she mentioned, when the legislation was published originally, certain cases of living organ donation was seen as novel so cases have to be referred to a panel as required by law, but nowadays they have become routine practices yet they are still required to be referred to a panel. It was so fascinating to hear about all these examples and their complexities.
Here is a screenshot of the padlet for this symposium and you can see all the stimulating discussions that took place at the symposium:
For me, the different talks at the symposium really illustrated the changing scope of organ donation technologies, how it get enacted in practices, the ethics and care, how technologies transform practices and how they could fall out. I thoroughly enjoyed the day and learned so much from it.
I will post a blog on symposium 1 sometime this coming week and please join us for our symposium 3 on vital data. It is guaranteed to be a thought provoking discussion! You can sign up from the Eventbrite page here!
(By Lijiaozi Cheng)