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- Reflections on Vital Circulation symposium 3: Vital Data
On 22 July, we had our final symposium in the series of symposia hosted by the Vital Circulations network. This one-day online symposium is about the circulation of data, or more specifically, vital data – data about bodies, about life and about death. It explores how data and the values and practices of data feature in ‘vital circulations’ and brings together scholars from different disciplines, including arts and humanities and social sciences, to examine data and the flow of data in a provocative way. It covered topics ranging from the Real World Evidence, values and beliefs around data mining, ethics of genetic research and citizen-led forensics and was absolutely fascinating and thought provoking! It gives me the opportunity to think about the implication of data practices in different contexts and its vitality, and also at the same time the data in my everyday life.
In the first talk, Eva Hilberg, a post-doctoral researcher based at the University of Sheffield critically unpacks the promises of Real World Evidence. She discusses the epistemic revolution carried by Real World Evidence in the field of pharmaceutical regulation and focuses on the case of the US, EU and the UK. Real World Evidence (RWE) has emerged in pharmaceutical regulation that carries the promise to include evidence coming from Real World Data (RWD) that is not gathered through randomised controlled trials, challenging the medical epistemology and potentially leading to more inclusion of patient experiences and the improvement of outcomes but at the same time it might also be exploitative of unpaid labour. There are also tensions in the evaluation of the quality of data across sites and the paper mentions different modalities of such evidence, including registries, insurance data collections, and more individualised digital health applications. Eva looks at the regulations around RWE and argues that the resulting tensions are effects of an instance of promissory regulation that might mean more fragmentation of access to treatment. It is so interesting to hear from Eva about this hierarchy of evidence, explore what the promise of RWE might mean, rethink the epistemology it carries and what it will actually mean for patients. I keep a watch that notes down my heart rate and the steps I walk everyday and I wonder about the validity of this data!
Next, Itzelle Medina Perea, also from University of Sheffield, talks about some preliminary findings from the project she is working on, Patterns in Practice (PIP), an AHRC-funded project that is exploring how practitioners’ beliefs, values and feelings interact to shape how they engage with and in data mining and machine learning, which they see as forms of ‘narrow AI’. Based on the preliminary analysis of interviews, focus groups, diaries and observations with a team working on a drug discovery project at a major UK pharmaceutical company, Itzelle talked about the beliefs, values and feelings these practitioners have in their engagement with such new practices, namely, data mining and the use of AI techniques in drug discovery. Itzelle also noted how such beliefs, values and feelings play a role in crafting their culture of practices. When thinking about new technologies it is easy to focus on the promise of the technologies and ignore how those technologies are actually being used and being incorporated into practices, and Itzelle’s talk really made me think about the role of the emotions of the practitioners in their work. Data mining and machine learning technologies are fundamentally embedded in human practices and human values.
We then moves to a more philosophical discussion and hears from Ilaria Galasso, postdoctoral researcher in the MISFIRES ERC project on collaborative innovation in healthcare for the collective good, at University College Dublin. She talks about genetic data and the collective good and problematizes the notion of collective good in genetic research. She discusses the dilemma between public and individual interests, between sharing in the name of public good and the right not to share under the banner of individual sovereignty. The talk draws on the documentary analysis and interview data with research leaders and patient advocates with a particular focus on two recent controversies: the case of the UK institute Wellcome Sanger, and the case of the company Genuity Science,. After critically weighing collective good against individual good and discusses consequentialist ethics and deontological ethics, this talk advocates for a ‘participant as leaders’ approach in genetic research, which she highlights is much more than just ‘have a seat at the table’. As argued by Ilaria, it is vital to facilitate the capacity and competency building in the communities, especially the disadvantaged and historically exploited communities in order to produce research ‘conducted BY them rather than ON them’, which can help maximize collective good and minimize risk of exploitation. This paper extends this argument to the notion of global good and argues for investment on research to be conducted by low-income countries themselves, rather than conducted by developed countries on them.
In the last talk we hear from Ernesto Schwartz-Marín, who is a Science and Technology Studies scholar working in the fields of biomedicine, forensics, and citizen science at Exeter University. His talk is about his ethnography at Mexico on citizen-led forensics and discusses the participatory challenges to the politics of vitality in the search for the disappeared in Mexico. In Ernesto’s research, participant observation and participatory action research are combined. He worked with mothers of the disappeared in Mexico in creating citizen-led efforts to gather DNA, an alternative form of bio-banking, in the search for the disappeared. His talk is really interesting and highly reflexive. He discusses different aspects of such grass-root intelligence units and comments that at the center of citizen-led forensics is weakness and vulnerability, which has paradoxically become its strength. It does not start in the knowing, nor with a position of authority; quite on the contrary, it starts from the margins and challenges what has been considered knowable. It starts with ‘what if’? Ernesto also comments that this is an effort to seek to push certain socio-technical boundaries, while at the same time it may carry the risk of reinforcing the very practices it hoped to challenge. This talk has given me so much food for thought!
This symposium marks a beautiful conclusion to our series of symposia. We have learnt about biomes, bodies and buildings in the first symposium, about organ donation in the second symposium and vital data in this final symposium. I have thoroughly enjoyed listening in and absorbing all the fabulous talks from the three symposia! We have sought to examine different aspects of vital circulations as embedded in the social fabric. We have travelled from built environment, to a more virtual existence, an almost post human existence. I look forward to seeing what comes out of this discussion!
- Reflections on Vital Circulation symposium 1: Biomes, Bodies and Buildings
On the 6th of January, the White Rose Vital Circulations Network hosted its first symposium, on Biomes, Bodies and Buildings. It had quite a big turnout especially given that it took place right after the new year. It brings together an extremely interdisciplinary panel of expertise, ranging from the sociology of health and medicine, medical anthrpology, engineering, design, architecture and microbiology, to bring forward fresh perspectives on the biotic life of buildings. It thinks about the relation between biomes and buildings and seeks to understand what it means to “rethink architectural spaces as multispecies environments”. It is such a thought-provoking event as it is both rich in historical perspectives and interrogates the most cutting-edge ideas and perspectives.
Firstly, Jieun Kim introduced the Vital Circulations Network and the central questions that concern the network (read about us here), and after that Nik Brown introduced the background for this symposium and traced the history of the relationship between buildings and biomes, and the way different historical understandings of disease feature into the design of the built environment, and clinical space in particular.
It is perhaps worth mentioning that the symposium was initially set out to take place face-to face but eventually became a virtual event due to a rise in covid cases and uncertainty about what covid regulations were to be placed. To discuss human relations with microbes and the built environment seems ever more timely given this context.
First in an exciting lineup is Richard Beckett who talked about ‘Probioticities’. Richard Beckett is an Architect and Associate Professor of Bioaugmented Design at the Bartlett, UCL. His research focuses on design operating at the intersection of computation, biofabrication, and microbial ecologies in buildings and cities. And this talk introduced the audience to a ‘probiotic’ approach to the design of buildings and urban environments. Richard noted how the modernist ‘antibiotic’ principle might not be suited given new understandings of diseases and new disease trends and proposed new ways of architecture design to embrace beneficial microbes. In line with a contemporary awareness of the essential role of some microbes for human bodies and the environment, Richard has done some exciting experiments to host beneficial bacteria in living design materials and seeks to even incorporate them into architectural design, such as a pavilion. This creates a ‘beneficial entanglement’ between microbes, bodies and the environment and is such a refreshing approach that challenge our preconceptions about biomes.
Next, we heard from Hayley MacGregor from the Institute of Development Studies on ‘Clinic design, patient flow and the organisation of care: responding to Tuberculosis transmission in primary care facilities in South Africa’. Hayley and colleagues combined different research methods to identify cost-effective interventions for infection prevention and control (IPC) in health facilities in South Africa. This is in the context of the high disease burden of Tuberculosis (TB) and with the purpose to decrease airborne transmission of microbes in health facilities, and covid undoubtedly posed more complexities to this issue. Hayley noted that the poor implementation of TB IPC in healthcare facilities is commonly believed to be a result of poor compliance of healthcare professionals in terms of wearing masks or opening windows for ventilation and interventions have been proposed along the lines of making technical changes to the material infrastructures. However, based on the findings of the Umoya Omuhle or ‘fresh air’ project, Hayley and colleagues seek to approach the issue of reducing TB transmission from a ‘whole systems’ perspective. In the talk, Hayley talked about the ‘flow’ in health facilities, which revealed the impact of not just material designs but also social, managerial and infrastructural factors in the clinic, and sometimes there are competing priorities in the building designs which need to be accounted for. Hayley’s talk illustrates the complexities of the issue of infection prevention and control in the clinic setting with microbial, infrastructural and policy dynamics intersecting with each other and emphasises the importance to hear from the needs of staff in building designs.
What follows after lunch is Nick Fox’s talk on “Coronavirus, capitalism and the built environment: a more-than-human analysis.” In the context of the pandemic and the heightened inequalities, Nick noted the way some environments have led to covid hotspots such as among food packaging and ‘sweat-shop’ garment manufacturers. Nick analyses this ‘pandemic assemblage’ with a more-than-human framework in a really thought-provoking way. Nick unpacks the global prevalence of covid and the inequalities in its spread as a process of coronavirus “piggy-back on the social relations of capitalism”. Nick looks at all the ‘tiny disadvantages’ that combine to increase the chances of someone catching covid, such as crowd, poor working conduction. This though-provoking analysis of ‘pandemic assemblage’ and ‘tiny disadvantages’ offers an alternative understanding that challenge the predominantly individualistic public health discourses on the pandemic, and carry important implications for policy-making.
After Nick’s really stimulating theoretical account, we then heard from an engineering perspective. Robert Walker and Craig Fenton from DataInnovationAI talked about ‘Modelling biorisk in the built environment’. They discussed biosafety risk of the buildings and provided an AI driven solutions to assess and mitigate such risks in an effort to improve productivity with data driven techniques and computing. They showed us an interface that simulates the built environment and the human movement in the space to estimate the risk and it is so fascinating that this is becoming a possibility! It is undoubtedly an incredibly useful technology for monitoring the safety of work environments post pandemic.
Last but not least, Daryl Martin talked about ‘The architecture of risk: the design of clinical space in a post-antibiotic age’. This is a rich paper that looks at the example of the recently opened Skane University Hospital Infectious Disease Center, located in Malmö and designed by CF Moller + Link Arkitektur, in the context of a wider historical examination of hospital architecture. Daryl looked at the intersection of infection control, architectural atmospherics, and embodied practices and talked about the way recent infectious disease outbreaks have influence on the design of the building, which in turn shape how illness, risk and care are experienced in the clinic space. The example, the cylindrical Skane University Hospital Infectious Disease Center is designed in such as way with open-air decking to enclose a central drum of patient space and an internal administrative core to minimise the risk of spreading diseases. The building design itself became an expression and a response to changing ideas of disease management.
This has been such a fascinating day of exciting talks! I feel that the talks connect with each other really well and offer in combination an interdisciplinary account for the central questions of the symposium: ‘What will it mean to rethink architectural spaces as multispecies environments, in a way that takes more account of the microbiological?’ On the one hand, the embodied movement of bodies in buildings is recognised. On the other hand, different conceptual approaches are explored, such as the ‘whole systems’ approach and the more-than-human approach, both challenging the conventional public health enphasis on changing indivudial behaviors. Moreover, the design of living materials and a probiotic approach to architecture and urban environment offer exciting visions for future building designs. The fact that the biosafety of buildings cane be assessed with AI is also so exciting. What would our future buildings look like, in this post (?) pandemic era?
(By Lijiaozi Cheng)
- Reflections on Vital Circulation symposium 2: Tissue Donations Beyond the Gift of Life
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)
- Vital Circulations:Bodies and Microbes
The Vital Circulations Network has organized a few events so far. We had our inception event for the network on 28th June, 2021 (you can find some reflections and a few provocations arising from this event from our blog) and two meetings over the latter half of 2021, before our well received symposium Vital Circulations – Biomes, Bodies and Buildings took place on 6th January 6, 2022. This symposium was the first one among a series of three (the second one will be on Tissue Donations: tissues and reciprocity and the third one will be about Databased Circulations: genes and inheritance), so please keep an eye out for updates about our events to come! We will soon post some reflections about the symposium on 6th January 6, 2022, but I wanted to briefly reflect on the two meetings we had over the later half of 2021.
In the meeting which took place on 28th July, we heard from Professor Rory O’ Connor on disability, its imagination versus reality from a medical practitioner’s perspective. Rory, based on the context of his medical practice, commented on the insufficiency of the medical model of disability and some concerns about access. In particular, he talked about some instances in the medical setting where access to test/donation facilities are restricted due to lack of consideration for people living with impairments.
This discussion evokes a social model of disability, and raises questions about how exactly to mobilize this in the medical setting. In the social model of disability, “disability” is due to the “the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers”. Therefore, infrastructure in terms of the physical, attitudinal, communication ad social environments should adapt to the needs of people with impairment so as to enable their participation in society and access to resources.
In the second meeting, which took place on 22 October 2021, we heard from Professor James Stark on a completely different topic. We went back in history to look at the portrayal of microbe in public communications in history, its changes and stabilisation across different periods and the important questions this raises. We were presented with some intriguing and colourful visualisations throughout history. In those visual depictions, we saw how germs are portrayed as other, invader and alien. And in the depiction of germs, the social imaginaries creep in, in terms of race, gender and class and so on. In such a way, those representations are sites where we can look closer in terms the changing relations between humans and microbes, as well as broader social concerns.
The two meetings, from different perspectives, point to different inequalities in vital circulations. For me, they both speak to the current pandemic in intimate ways. The pandemic has perhaps forced many people, for the first time, to face the lived reality of not being able to move freely and do things as they wish – perhaps just like the world people with impairments face on a daily basis, a world without appropriate infrastructure for them to thrive. Things like working from home, online meetings and conferences perhaps can be incorporated in a post-pandemic world to give better access. On the other hand, our depictions of the virus, its different variants are not just biological depictions void of social imageries; they often can be biases and full of process of othering – I speak from the perspective of a Chinese person who has faced racism because of coronavirus.
(posted by Lijiaozi Cheng)
- Provocations, Vital Circulations: Swabs
Spit is powerful stuff. As Kragh-Furbo and Tutton point out, it can disgust, it can cause offence, it can even (as we have seen acutely over the last 18 months) harbour and transmit disease. Spit, however, also holds promise. With the development of biotechnology over the 20th century, there’s now a the capacity to locate in spit the so-called building blocks of life (to employ the kind of rhetoric that Nelkin and Lindee in the DNA Mystique might describe as everyday ‘gene talk’). It’s because of this that when you register as a stem cell donor in the UK, you don’t even need to provide a blood sample. The registries can get everything they need to know about your genetic profile from just your spit. Enter, the flocked swab.
These swabs – you’ll likely have put one up your nose and down your throat to test for COVID in recent weeks – are used to collect cells from your cheek. The swab is packed, sent to a lab and typed, your genetic information stored on a database so you can be included in future searches for patients who need a stem cell transplant. During my current research project, Mix & Match, I spent lots of time at events where smaller charities register people using these swabs. It’s hard to imagine it now, but we’d peel where it says ‘peel here’, allow the registrant to take the swabs, rubbing their inner cheeks for up to three minutes with them. Then we might hold out an envelope, let the registrant slide their swabs into it, and post off the envelope to the registry.
They’re an interesting site for a lot of circulations. What’s to be done with all the single use plastics for example (think of all the lateral flow tests that need to be discarded after use)? The flow of human cells from the mouth, to the swab, via the post, into the lab, where the material is taken out of the swab and tissue-typed. The data, too – when a tissue-type is entered into a registry, and then searchable globally for patients who require transplants. The data may flow far further than the original cells on the swab ever did. And then, prhaps the most incredible flow of all: the cells from one human donated (because of that original decision to swab and register) perhaps even being flown to another country, to be transplanted into somebody else.
(Author: Dr Ros Williams)
- Provocation, Vital Circulations: Making Donor Citizens
If organ donor cards work as semiotic objects signalling their carriers’ allegiance to the cause of ‘saving lives’, a host of other mediums circulate beside them to instil such a virtue of bodily giving in the first place. Take this booklet on blood donation disseminated by the Japanese Red Cross, for instance. Targeting primary and middle school students, who are yet ineligible to donate blood in Japan, the booklet conveys the alarming figures of falling blood donation rates among the younger generation, juxtaposed with the constant demand for blood transfusion. Cute fonts, bright pastel tone colours, and the manga characters cast blood donation as a children-friendly activity, possibly to dispel any fear associated with blood or needles (The pain and dislike of needles continue to rank the top self-reported reason of not donating blood among young people in the national blood donation consciousness surveys conducted by the Japanese Ministry of Health, Labour and Welfare!) The manga interspersed throughout the booklet ends with the two (phenotypically Japanese) protagonists declaring “We will also donate blood, when we turn sixteen!” The message here seems to be that becoming virtuous members of (Japanese) society means becoming donors. Or, put differently, growing up means being able to save lives by bodily giving to other citizens. While tissues like organs and blood circulate across bodies to ‘save lives’, the virtue of bodily giving also needs to be kept alive across generations through the circulations of objects like this booklet. What other things, images, virtues and affects are circulating here? Where do they end (what are the parameters of circulations)? Can we talk about the lives, afterlives and aborted lives of vital circulations?
(Author: Dr Jieun Kim)
- Provocation, Vital Circulations: Organ Donor Cards
Do you carry a donor card? In May 2020 organ donation law has changed in England, moving from consent to an opt-out system of organ donation based on presumed consent. The organ donation card suddenly looks like an obsolete object. Why carry a card, if one’s consent is presumed? The solution for those wishing to opt-out might be to carry a non-donor card? No such object exists so far, and one can surmise why not? Non-donor cards are in circulation in Japan, for instance. In England, opt-outs can be expressed via the online donor register only.
Yet NHSBT continues to encourage people to carry donor card. It is still valued, not as a form of consent, but as one of the relevant signs of one’s intention. Donor cards were never legally binding, but this does not mean they are legally, socially, culturally insignificant. There is a long tradition of public health messaging encouraging people to sign their donor card, and that carrying that signed card could save life. In reality, the card was always limited, and subdued by other mechanisms of certifying consent.
In recent years, in England and elsewhere, there is more open admission and discussion that to the same extent that consent forms do not represent consent, donor cards do not stand in for consent to donate. The emphasis in public health messaging has shifted in recent years to encouraging people to talk about organ donation with their family members. The most recent version of the organ donation card (they are still very much available, in circulation and encouraged) certifies not only the wish to donate, but that the card holder has spoken to their family. Tensions between family consent and individual consent are still at the heart of tensions in ICU and organ donation units. Is it time for a socio-legal history of organ donor cards?
(Author: Professor Marie-Andrée Jacob )
- Vital Circulations Inception event: a personal reflection
The inception event for the project,Vital Circulations: A Framework for Understanding Social Dynamics in and beyond a Pandemic, a White Rose Collaboration Project, took place on 28th June at the University of Leeds. As the project assistant who joined the team only recently, it was my first time to meet all the project members (find out more about this project and it’s project members here). It was also my first face-to-face academic event for quite a while. I have lost count of how long it has been!
The inception event was set up in a hybrid manner, that is, a combination of socially distanced co-precence in a room, and a zoom meeting. I did attend physically – so my first impression of this event is the act of actually travelling there, the whole experience of traveling to a venue, to be on the train, to come in contact with people for a non-virtual discussion, as well as the tea and coffee from the venue (Oh I do miss it!)
After each making a self-introduction, and a brief orientation from Jini, a really interesting audio fragment, from an experimental theatre in Japan was played as a provocation. It is a performing acupuncture theatre in which the body is turned into a stage. An ordinarily personal and private encounter of acupuncture, was given some special touch and gains theatricality and make me think about the body and its boundaries. The needle thus became a potent symbol for the crossing of boundaries and became the first object that fascinated me for the day.
For me, such a case of alternative health practices also sets a interesting backdrop for the discussion of the day on vital circulations in bio-medicla models.
Another material for provocation was a report on the risk of transmission in different scenarios (see the link here). In these reports, the body, the different bodies, are put under spotlight, the distance between bodies carefully calculated. Hence comes knowledge about risk and obligations. It goes without saying that being at the event itself is filled with such considerations – the care taken in maintaining ventilations, the distances, the masks, the hesitation in passing around objects.
For this inception event, every participant has been asked to bring a prop related to their research that has some bearing to the theme of vital circulations, to showcase the prop and to talk about it. This has turned out to be such a fascinating and thought-provoking exercise. There are different kinds of objects: hand sanitiser and hand cream -that have grown to become ordinary everyday objects since the pandemic, T-shirt from bone marrow donation charity, doctor’s outfit when working in covid wards, pin from patient groups, blood donor card, pamphlets for blood donation in Japan, different images about rare blood diseases in India. Everyone has also been given post-it notes to take notes of their thoughts on the props and the readings they think of, which have been collected at the end of the event.
The post-it notes later gained a virtual life online.
There are mundane objects and more specialist objects, objects imbued with personal meanings, images that give a glimpse into different values in relation to different conditions/acts of vital circulations in different parts of the world. And as can be seen in the collection of post-it notes, there was a lot of food for thoughts!
I have been collecting images of the props and provocations and might be posting more about them in the blog in the next couple of weeks! One prop that definitely rings a bell for everyone is the hand sanitizer and hand cream, which Lauren brought along:
This photo includes two material objects – 1) hand wipes and 2) hand cream. These objects relate to the two most recent projects I have been involved in which include exploring the experiences of hospitality workers and food delivery drivers/couriers as they have worked throughout the Covid-19 pandemic. Hand wipes relate to the availability and/or lack of toilet and hand washing facilities for delivery drivers. For many of these workers, this has meant having hand wipes in their vehicle in the absence of provision. The hand cream relates to experiences of hospitality workers who have described getting incredibly sore hands and damaged skin as a result of increased cleaning procedures in hospitality settings. Together, both of these objects represent “quiet materialities” (Pink et al., 2014) in caring for and protecting the hands of workers.
Find out more about Lauren’s project here.
Keep an eye out for more props and more provocations!
(posted by Lijiaozi Cheng)
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