Death, donation, and dedication in the twenty-first century
Nothing, neither among the elements nor within the system, is anywhere ever simply present or absent. There are only, everywhere, differences and traces of traces.
– Jacques Derrida, Positions
On 20 January 2015 it was reported in the UK press that a remarkable operation had been performed. In a procedure described as a ‘milestone’ in neonatal surgery, the kidneys and liver cells of a six-day-old baby girl were removed after her heart stopped beating. The kidneys, a mere 4–5 centimetres in length, and the liver tissue had then been transplanted into the bodies of two separate recipients in what were, for them, life-saving operations. Behind this simple narrative lies a complex tangle of grief and pragmatism. On the one side were the parents, no doubt struggling to come to terms with a birth in which their baby had been starved of oxygen in the womb, meaning that when she was delivered she had severe brain damage and was in need of resuscitation and other life-saving interventions. On the other side were clinicians and nurses, charged not only with the responsibility to care for this very sick baby and her parents, but also with a wider ethical remit to save other lives, reduce suffering, and push the boundaries of neonatal transplant techniques. We are afforded only the briefest of glimpses of the complex choreography that goes into managing this tangle, and one can only imagine the dilemmas and distress that a review of options would have engendered for all involved (Arteja and Godambe 2015). What is clear from the reportage after the event, however, is that the parents made the decision to proceed with the donation within a few hours of the birth and with little ‘persuasion’. [note 1]Laura Donnelly, ‘Medical First Means Newborn Is Britain’s Youngest Organ Donor’, Daily Telegraph (London), 20 January 2015, http://www.telegraph.co.uk/news/nhs/11356021/Medical-first-means-newborn-is-Britains-youngest-organ-donor.html.
A press release from the Imperial College of London conveyed the official narrative; in it, Prof James Neuberger of the Blood and Transplant unit of the National Health Service stated that this was a ‘brave decision of the family to donate their baby’s organs’ and ‘an act of extraordinary generosity’. [note 2]Sam Wong, ‘First Successful Organ Donation from Newborn Carried out in the UK’, press release from Imperial College London, 22 January 2015, http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_22-1-2015-15-35-37.
It was also described in the medical literature by Drs Gaurav Arteja and Sunit Godambe (2015, 276), the clinicians who led the transplant team, as a ‘noble cause, which makes the grieving family’s journey easier, and has the potential to transform another life’.
This event brings into sharp and immediate focus the emerging patterns of relationship between death, donation, and dedication that we set out to explore in this collection. Convergences are currently being driven by three important developments. First, there is a substantial and extending repertoire of cadaveric tissue that, once pressed into the service of biomedicine, might be used for the benefit of others. Given the range of therapeutic, educational, and research purposes to which cadaveric tissue might now be put, there is little that cannot now be meaningfully recovered from a body at the point of death or shortly thereafter. Death as closure and finality might now be combined with death as opportunity. Second, we note the changing nature of the transaction being effected when a person, or his/her proxy, intentionally donates their body, in whole or in parts, for use in this way. Reflection on the nature of such transactions is familiar territory for anthropologists and sociologists, and with many leaving behind the rather worn-out conceptual heritage of ‘the gift’ to embark upon a more critical parsing of donation. Attention has been drawn to the ideas of economic value and commoditisation that celebrations of tissue as ‘gift’ can never quite erase (Gunnarson and Svenaeus 2012; Hoeyer 2013; Parry 2008; Strathern 2009; Sunder Rajan 2006). These approaches have been immensely important when it comes to understanding the proliferation of ‘tissue economies’ in contemporary societies across the globe (Waldby and Mitchell 2006). Our interest here is to extend the exploration of death and donation as sites of intense conceptual richness in terms of both value and meaning. The collected contributions to this special issue reflect our contention that death and the desire to give it meaning are increasingly intersecting with opportunities for, and expectations of, voluntary tissue donation. We reflect on what might be thought of as the tissue moralities that underpin all acts of voluntary donation and that locate relational interests as central to any attempt to understand tissue economies (Waldby and Mitchell 2006; Lambert and Macdonald 2009; Macdonald 2011).
This change of direction opens out onto our third and most important theme. While death may often be regarded as an ending, a rich history of anthropological studies have shown that it is also an event given meaning in terms of beginnings, renewal, and rebirth (Bloch and Parry 1982; Metcalf and Huntington 1991). As ritual practices the world over attest, death initiates powerful emotions and sentiments, triggering the reorchestration of relationships and attachments. In simple, and rather Durkheimian, terms, these are occasions when the question of immortality is raised. Ethnographic accounts detailing ritual treatment of the dead give rise to the realization that varied immortalities of the recently deceased are in play. Connection may be desired and cultivated as people become ancestors, or it may be feared or fled from as they become ghosts who haunt the living (Kwon 2008; Vitebsky 2008). Rituals occurring at death typically undertake the physical disposal of the corpse and negotiate the separation of whatever it is that is believed to have once animated the person: a soul, spirit, character, life, and so forth. In these practices are to be found evidence of the cosmologies in which lives and deaths are understood as being connected and, moreover, in ways that endure beyond any particular life or death. In our treatment of ‘immortalities’ in this collection, we examine how gestures towards immortality, which might typically be provided by established belief systems, also draw on new and emergent ones. Here the work of the imagination is paramount in making sense of the simultaneity of presence and absence, continuity and discontinuity, life and death, in contemporary social experience. It is our contention that the new possibilities for making the ‘postvital’ body (Doyle 2003; Olejaz this issue) and its constituents available to address biomedical need are resulting in intersections that change the meanings and management of death in a range of different social and cultural settings.
The practices around donations of whole bodies and their parts are a point at which private death and public dedication bring the imperative to donate into established belief systems (Douglas-Jones and Simpson, this volume). It is also evident in the novel acts of memorialisation and dedication that donation makes increasingly available in secular contexts (Árnason, Olejaz, and Hallam, this volume) and that are powerfully reinforced at the level of the state (Ådahl, this volume). These developments all point towards the ‘new immortalities’ of our title. Practices that bring together death and donation show that deep and powerful feelings about what endures beyond death are harnessed rhetorically to the biomedical imaginary. Bringing this convergence into focus suggests many novel sites of enquiry and theoretical reframing; it demands a consideration of the sociality – not just the materiality – of the body at death. It prompts a re-evaluation of the ways that education, spectacle, and the use of bodies as public sites of learning open up new possibilities for donation, disposal, and dedication outside of the protected environment of the teaching laboratory. It also invites reflection on the way that exhortations to donate, and the responses to these by different publics, carry deeper messages about culture and community in the context of plural societies (Simpson 2015). Each reframing signals an evolving relationship between the state, death, and health, asking questions about how citizens might participate in a moral economy constituted within, as well as beyond, the family and community. In Foucauldian terms, these changes are as much about the ‘thanatopolitical’ (politics of, and over, death) as they are about the ‘biopolitical’ (politics of, and over, life), and they come with an increasing realization that these terms do not refer to simple opposites but are mutually constituted (Foucault 1976). Where cadaveric tissue is concerned, life is made possible precisely because of the way in which people die and choose to dispose of their mortal remains. We return to this insight in the final section of this introduction, where we attempt to move beyond the current biopolitical framing of vital concerns. The new immortalities agenda explores how the materiality of death is incorporated into the value regimes of the living, and how it brings into view the idioms of immortality that are used to give a sense of ‘living on’ in others, whether through the growing repertoires of tissue utility, embodied knowledge, or public spectacle.
The articles in this collection are a selection of a larger set presented at a colloquium entitled ‘New Immortalities: Social and Cultural Perspectives on Cadaveric Tissue Procurement and Use’, which was held in Durham, England, on 25–26 February 2014, as well as at a panel at the 2014 Association of Social Anthropologists conference, held from 19–22 June in Edinburgh. [note 3]Participants at this workshop included Bob Simpson, Suzanne Ådahl, Karen De Looze, Ciara Kierans, Tom Widger, Maurice Said, Rachel Douglas-Jones, Claudia Merli, Liz Hallam, John Mclachlan, Hannah Rumble, Douglas Davies, Sarah Atkinson, and Arnar Árnason.
Invited participants, working in a range of European, South Asian, and East Asian settings, were asked to reflect on the following questions, which had been circulated in advance:
What are the ways in which value attaches to the bodies of the dead in different country settings in the twenty-first century?
How are people persuaded to submit their own bodies, or the bodies of their relatives, to new regimes of postmortem value (e.g., biomedical, economic, and social)?
What happens at the point where private relations with the dead intersect with public interests in the trajectories of cadaveric materials?
Given that the ways that people elect to manage the disposal of their dead are diverse, what might we learn about how public policy is being shaped in this area?
In the remainder of this introduction, and as a prelude to the papers we have selected, we provide an overview of the themes that emerged from the colloquium under the three headings identified above: uses of cadaveric tissue, the meaning of transactions, and the emergence of new practices for the postmortem management of bodies.
Uses of cadaveric tissue; An ever-widening repertoire?
In 1995, the UK-based Nuffield Council on Bioethics published its report Human Tissue: Ethical and Legal Issues (NCoB 1995). [note 4]The Nuffield Council on Bioethics is an independent body that advises policy makers, stimulating and addressing pressing bioethical questions.
This document provided an overview of the technical and legal issues involved in the procurement and use of human tissue. Seventeen years later, the same topic was revisited by the Nuffield Council. The regulatory landscape had evolved in response to new scientific and clinical developments, and there had been shifts in public opinion following a series of high-profile cases in which tissue had been inappropriately acquired, stored, and used. The most significant of these was the scandal involving the Alder Hey Children’s Hospital, where organs and tissues from dead neonates were removed, stored, and later used in ways that the parents of these children found abhorrent (Hunter 2001). The Human Tissue Act 2004 and the Human Tissue (Scotland) Act 2006 were produced as a result of the enquiries prompted by these cases and subsequently changed the UK’s regulatory landscape, propelling the issue of tissue use and procurement up the political and social agenda.The report produced by the Nuffield Council on Bioethics in 2012 was thus very different from its predecessor. Entitled Human Bodies: Donation for Medicine and Research (NCoB 2012), the second report did not begin with a philosophical-cum-medico-legal approach of the kind adopted in the 1995 report. Instead, it adopted a comparative approach, focusing on issues for donors and the different practices, ideas, and attitudes prevailing in distinct areas of donation (blood, organs, cadavers, gametes, and embryos). [note 5]One of the authors (Simpson) was a member of the Nuffield Council on Bioethics Working Party that produced Human Bodies: Donation for Medicine and Research (NCoB 2012).
The questions that the 2012 report set out to answer revolved specifically around a tension that underpins many of the issues we explore in this volume: progress in biomedical science creates an expectation that bodily faults and failings will be fixed by the transfer of tissue from one body to another. This increases patient demand, to which the demand for tissue in educational and research settings is added. Failure to meet this increase in demand gives rise to a pervasive discourse about shortage and the urgent need for tissue to be procured.
Shortage, in turn, raises the question of how the demand for tissue can be met in ways that are ethically and socially acceptable. As we will see in the next section, shortage changes ideas of the value of donations and pushes at the boundaries of what are acceptable ways to encourage citizens to commit their own tissue – or that of a deceased relative – to meet this need. Should money be offered for donation? Some say ‘yes’, and argue that, subject to certain provisos, it ought to be an individual’s right to dispose of his or her own body in whatever way they think fit. Furthermore, they suggest that many of the ethical objections that others raise about exploitation and vulnerability can be met by creating a regulated market (see, for example, Beard, Kaserman, and Osterkamp 2013). The British philosopher John Harris has, for example, long advocated a monopsony where organ donation is concerned, that is, a market in which there are multiple sellers but only one buyer (Harris and Erin 2002). This purchaser would be a state-run health provider, such as the UK’s National Health Service. Such an arrangement, it is argued, would prevent the possibility of any unethical mediation between for-profit private medics and vulnerable vendors. Harris and others argue that a drastic problem – shortage and its consequences – needs a drastic solution to increase the supply of tissue. But, for many, such ‘drastic’ solutions lie uncomfortably close to situations in which tissue might be unlawfully procured. Concerns are often raised about ‘transplant tourism’, the illegal trade in organs and the tendency for rich people to predate on the bodies of the poor, and particularly on those living in developing countries (Scheper-Hughes 2000, 2002).
Despite this academic discussion, the second report of the Nuffield Council on Bioethics made clear that introducing money into tissue transactions was a line that many, in the United Kingdom at least, felt should not be crossed (NCoB 2012). The council expressed the strong view that procurement to increase supply should operate within a broadly Titmussian vision of ‘gifts’ voluntarily given to strangers. [note 6]Titmuss played a significant role in developing the intellectual underpinnings of a progressive welfare state in the United Kingdom in the 1950s and ’60s. He is particularly well known for his comparison of blood donation in the United States and the United Kingdom, in which he affirmed the political and moral superiority of voluntary blood donation over the commercial and commoditised blood collection services that were developing in the United States (Titmuss 1970).
They argued this even though such a model is demonstrably unable – in its present form – to mobilise sufficient tissue to satisfy current need, despite the many incentives on offer, such as certificates, badges, and the payment of expenses incurred as a result of donating. Whilst falling short of direct payment, such incentives do in many countries go a long way towards ensuring donors are compensated. Yet, as the repertoire of uses for cadaveric tissue grows, new shortages are being brought into existence and these, in turn, fuel proclamations of urgent need. This expanding repertoire of uses with which demand cannot keep pace brings the next of our three themes into view: how people are persuaded to participate voluntarily in the new thanatopolitical assemblages that the discourse of demand and shortage set in train.
New immortalities and the rhetorics of corporeal charity
A substantial literature in anthropology demonstrates how the cessation of life is a point at which distinctive, and often expert, routines are put into practice to ensure that, for the living as well as the dead, the corpse undergoes a meaningful transition, whether to an afterlife, a rebirth, or a place of memoriam. The list of ways to dispose of bodies to the satisfaction of the living (and the dead) is long and encompasses practices such as mourning, separation, washing, burial, cremating, and other funerary rites (Metcalf and Huntington 1991). There is a rich tradition of scholarship on these themes that goes back to Hertz’s ( 1960) seminal work on mortuary rites, includes Bloch and Parry’s (1982) exploration of death and the regeneration of life, and is complemented by the more recent work of Franklin and Lock (2003) who extend their analysis into the worlds of advanced biotechnologies. What all these works show is that death is rarely an endpoint that is not also a beginning of some kind. Immortalities come in many shapes and sizes.
Recent interest in death and corporeality takes up these classic themes, drawing attention to the contested meanings that come with the management of human remains in situations of conflict and turbulence, or what Verdery (2000) has referred to as ‘the political lives of dead bodies’. These approaches have generated anthropological interest in exhumation and forensics, repatriation of remains, and their reburial, and how these give rise to new funerary practices and new ways of classifying the dead (Merli and Buck 2015). The thanatological excursion we embark on here takes a significantly different direction. Contributing to this resurgence of interest in death and corporeality, we are interested in changes that have been brought on by the new developments in biomedicine and the biosciences that depend on the availability of cadaveric materials. In particular, we are interested in combining insights into tissue economies as they relate to death with ethnographic accounts of changes in how the body is managed at the end of life.
In trying to understand what is going on at this point of engagement, Hertz’s account of secondary burial continues to be instructive (Hertz  1960). In many ways Hertz anticipated both the structural turn in anthropology and the more recent interest in materiality and embodiment in religious practice (Davies 2000). As Hertz ( 1960, 46) puts it, the purpose of funerary rites is ‘to make a material object or living being pass from this world to the next; to free or create the soul, it must be destroyed… . As the visible object vanishes it is reconstructed in the beyond, transformed to a greater or lesser degree’. We might recall the dramatis personae that Hertz put into his schema for understanding the different interests that are being managed in the course of funerary practices. First, there is the soul and what might be thought of as a theological dimension to mortuary practice. This aspect of the schema involves attending to the after life and the metaphorical relation of the physical body and what is believed to abide beyond death. Second, there are those who live on and in various ways mourn their loss. These sentiments are conveyed in rituals that express the place in the social order of the dead and of the living who remain. Third, there is the corpse and the burial that marks the material process of disposal and the ultimate extinction of the social person.
Hertz’s classic schema provides a useful starting point for thinking about the issue of cadaveric donation as a modern insertion into the deeper patterns and processes through which death is made meaningful. Having identified the different actors and interests involved in funerary rites á la Hertz, it is useful to then think about the different temporalities they are involved in when cadaveric donation is contemplated. First, there is the expressed intentionality of the dead made evident on donor cards, pledges, and living wills; there is a host of ways that people are now exhorted to take responsibility for what will happen to their corpses. All of these actions signify novel ways in which the agency of the dead can be seen to operate. Moreover, they become interwoven with ideas of immortality as expressed through acts of celebration, memoriam, and dedication. But for the dead, time stops and as Marcel Duchamp famously had inscribed on his gravestone: ‘Besides, it’s always other people who die’. In most cases, family and community members carry out the will of the dead and do so at the same time they address their own grief. For them, time goes on, and, in Durkheimian terms, there must be a repair of the social fabric that death has momentarily torn and left gaping. Here, cadaveric donation opens new possibilities to express the sociality engendered by death. Finally, there is biomedical time: a secular and logistical world of parts in transit and in storage, waiting to bring life to others. This might occur directly as organs or tissues transplanted into the body of another or indirectly in research that will advance medical science or in medical education that will train doctors who will relieve suffering in the future. This is a time that never stopped or started but into which the corpse must be passed and out of which come new forms of immortalisation and memorialisation made possible by the munificence of the dead.
Crucially for the arguments we develop here, these possibilities are ones afforded by moral commitments to the modern imaginaries of medicine, education, and research. Moreover, the kinds of techniques and technologies involved mean that parts might ‘live on’ in spite of, or outside of, the body (Kaufman, Russ, and Shim 2006; Sharp 2006, 2007). In short, there is a growing repertoire of possibilities for just how the living might imagine transformation and presence beyond the finality of death, and these are becoming woven into the anticipation of death and its normative management in ever-widening settings and circumstances.
It would be a mistake, however, to see these processes as spontaneous, emanating from deeper drives often simplistically glossed as ‘altruism’. On the contrary, the motivation of citizens to pledge their bodily tissue for use after death is stimulated by what have been referred to as ‘rhetorics of corporeal charity’ (Simpson 2011) that serve to locate death within novel temporal and spatial trajectories. Such rhetorics are exemplified in the ‘noble cause’, to use the words of the doctor in the neonatal transplant case described in the opening account. Canonical narratives highlight the benefits of donation to the donor, whether spiritual rewards in an afterlife or those that offer a more secular and existential satisfaction. Whichever the case, such acts are marked as profoundly beneficent; that is, the donor becomes part of a narrative in which their actions will result in saving lives, relieving suffering, demonstrating care, and, increasingly, observing the moral imperative to recycle. These are points at which the exhortation to donate begins to carry the uneasy charge that meaning and transaction are being problematically conflated.
Values: Transaction and meaning
In his account of how recent developments in biology and medicine are changing how people think of ageing and dying, the sociologist John Vincent (2011, under ‘Economics of Vitality’) makes the assertion that: ‘to the market, as with science, death is impersonal, mundane and essentially trivial’. Yet, death and money are always deeply entangled, as seen in Metcalf’s analysis of the financing of secondary burial on Borneo (1981), contemporary studies of funeral poverty in the United Kingdom (Woodthorpe, Rumble, and Valentine 2013), and the findings of the 2012 Nuffield Council on Bioethics report, with its suggestion that donors’ families be compensated for their funeral costs. It would therefore not do to leave the financial dimensions of donation unexamined. Scholars have attended to the circulation and labour involved in markets for cadaveric tissues, moving analysis beyond the flat scarcity in biomedical rhetoric into the complexities of the transactions enacted. How do people respond to narratives of shortage and the pressures of demand on donors and staff alike? In the same way, following bodies and organs on their journeys highlights shifts in the regimes of value into which they are placed and that are created around them; the sites of value transformation necessitated by the utility of cadaveric materials are key to thinking about the moralities and practicalities of cadaveric donation. In these transformations, tensions arise between (what are cast as) intrinsic and instrumental values of cadaveric tissue; these values become visible through ethnographic attention to the workings of the economic aspects of donation in practice. Hoeyer’s 2009 essay (see also Hoeyer and Olejaz 2011) on the moral value of circulating post-crematoria metals, for example, drew careful attention to the narrative framing used by a recycling company that collects and recycles the metals in bodies (pins, artificial joints, plates, etc.) that are nowadays left after cremation. It becomes evident in his analysis that some forms of circulation are deemed acceptable and others are not. Distinctions arise in the process, the intent of the company, the morality of profit, new routes for charity, and the redefinition of ‘donation’ as it coincides with recycling (Hoeyer 2009). Accessing the sites where such tensions arise has demonstrated the simultaneity of these frames of value. A comparative collection of the kind we have brought together here permits us to explore how differences in meaning matter and vary across different professional and cultural communities.
A core theme that arises concerns the way people manage death collectively. As the possible uses of the body and its constituents become imbricated in a widening range of biomedical projects, new ways of bringing meaning to the experience of death are in evidence. These spaces enroll a wide range of participants in transformation, misalignment, rupture, and contestation. As Skeggs (2014, 1) writes of the logic of capital, ‘values will always haunt value’ (see also Graeber 2001). Economic values sit amongst many others, negotiated and bounded and named. The recent call for ‘valuographies’ emerging from Dussauge, Helgesson, and Lee (2015, 5), all researchers in sociology and science and technology studies, exemplifies scholarly recognition of this entanglement, in all of its ‘articulations, choices, exchanges, hierarchizations, sortings, displacements and commensurations’. It is the predominance of ‘value’ – singular, measurable, financial – that has given rise to academic responses that tend toward a plurality of values and nuance of experience, often supported by ethnographic work that demonstrates the many regimes of value arising at death (see, for example, Davies and Rumble 2012; Prentice 2012; Sharp 2006). Importance is not only attributed to the act of donation and the extension of life it affords, as in the opening story. A donor’s intention to donate will affect those who must carry out their wishes, and may, in some circumstances, make the decisions of those who are grieving easier (see Árnason, this volume). With this collection of articles, we develop the comparative point that in different religious traditions different tools are made available for imagining both the intentions of the deceased and the consequences of abiding by them. A reincarnatory cosmology (as in the pieces by Simpson and Douglas-Jones), for example, enacts death and decisions quite differently from a binary life/death logic, or a secular death (as in the pieces by Árnason and Ådahl). This line of approach moves the idea of immortality away from belief-based eternity towards novel forms, such as material tissues that live on in the body of an organ recipient or in the skills of a trainee medic or in the execution of a donor’s intentions recast as a way of honouring their memory.
‘Valuations of life’, write Dussauge and colleagues (2015, 1), ‘are intermingled with values such as scientific reputation, profitability, fairness, economic efficiency, and accessibility of care’. The emphasis in their exploration of value practices in the life sciences and medicine is on life and its management, yet one simple conclusion that might be drawn from the argument we have developed so far is that, in biomedical terms, the preservation and enhancement of life is also intimately bound up with death and its management. What if, starting from the range of ways that attention to the management of life has expanded our analytical repertoire, we were to seek a mirror of these analytical routes, not through the ‘bio’ but through the ‘thanato’?
The politics of life itself
In social science discourses relating to biomedicine and health, the thanatological domain has tended to remain, so to speak, in the shadows. Since Foucault’s The History of Sexuality, volume 1, introduced the concepts of ‘biopolitics’ and ‘biopower’ in 1976, his work has been profoundly influential in understanding developments in health and the biomedical sciences in the twentieth century. Foucault pointed to a shift in the relations of state, power, and government in Europe that pertained to human life in general and ideas of health and well-being in particular, typically captured in a shift from the sovereign power of the Middle Ages, in which the king had the power to ‘let live and make die’, to the prerogative of the state to ‘make live and let die’. As in his earlier analytical projects (which focused variously on prisons, asylums, families, hospitals), the idea of biopower involves genealogical associations among corporeal, personal, and population-level discipline and the rationalities of government (‘governmentality’). In his analyses of the European eighteenth century onwards, Foucault sketches out how governments appear to acquire new obligations and responsibilities for protecting and developing the biological capital of the population. Disease itself becomes a political and economic problem that, perforce, must be addressed through policy and governance strategies.
Building on Foucault’s analytical project, social scientists have gone on to develop what might be thought of as a bioregister, a series of theoretical and analytical moves that focus on contemporary developments in biomedicine, technology, and markets as these relate to health and public policy. In doing so, these approaches extend critical analysis of the connections among power, economy, knowledge, and life (for a critique of their limits, see Birch 2017). Influential recent elaborations of the Foucauldian approach include the concepts of ‘biological citizenship’, ‘biosociality’, ‘biovalue’, and ‘biocapital’, which we review in brief here. ‘Biological citizenship’ has been used to point to the changing dependence of modern citizenship on biological reference points. Petryna (2002) gives an account of how – in the Ukrainian city of Chernobyl following the nuclear disaster of 1986 – illness, disability, and life itself became the means by which citizenship and the rights to health that came with it were granted. Rose and Novas (2005) provide a different spin to biocitizenship with their emphasis on the increasing centrality of medicine, genetics, and genomics in contemporary expressions of identity and social relationships and, crucially, how they form the basis for entitlement or exclusion (see also Rose 2006). Similarly, Ticktin’s (2006) work on illegal immigrants in France draws attention to how certain illness classifications (and notably being HIV positive) are linked to health care entitlements and welfare rights.Adjusting course slightly, Egorova and Perwez (2013) describe how a complex tangle of cultural, religious, and genetic classifications enable members of a low caste (dalits) in South India to claim Jewish descent as the Bene Aphraim and thereby the right of return to Israel. In each of these cases, the project of making citizens involves inclusionary and exclusionary practices that draw upon the medical and life sciences as their foundation.
With a similar pedigree, the term ‘biosociality’ has also entered into the social science vocabulary. Coined by Rabinow in the mid 1990s, the idea of biosociality developed out of reflections upon the development of the polymerase chain reaction technique, genomics, and the diagnosis of genetic disease, and was intended to invert the prevailing (sociobiological) relationship between artificiality and nature as the grounding for knowledge practices (Rabinow 1996). Rabinow used the term specifically to refer to the novel configurations of relationships and subjectivities that form around particular diseases and conditions. However, it has since entered into social science usage as the way of capturing any relations that are formed around shared genetic or reproductive characteristics (Gibbon and Novas 2008).
We can also follow the bioregister in the direction of political economy, pointing out the ways in which the creation of surplus value is imbricated in the medical and life sciences. In his account of the formation and workings of biocapital, Sunder Rajan (2006) draws attention to the value that might be extracted from those who offer their bodies for clinical trials. Similarly, Waldby (2002) coins the term ‘biovalue’ to describe how tissues move from a social economy to one in which new kinds of value and surplus extraction might emerge(also see Waldby and Mitchell 2006). Cohen (2007), drawing on his work in India, writes of ‘biovailability’ and how new developments in postoperative drug regimes reduce the likelihood of organ rejection and thereby widen the pool of people who can act as donors. Again, the line between ‘gifts’ and ‘commodities’ is blurred as tissues, particularly when they are located in the bodies of the poor and the marginal, begin to acquire new forms of value, and particularly as the means to save the lives of those with the resources to pay for organ transplants.
For each of the above scholars, the biopolitical project is one grounded in a movement towards ‘life’ and the improvement of health, albeit an unevenly distributed one. Yet, as Fassin (2009, 2014) has argued, the notion of life at the core of this project is somewhat elusive, prompting him to draw attention to the circumstances under which lives are actually lived or what he refers to as the ‘politics of life’. In the following section we consider this criticism in relation to the place of death in the biopolitical project and, more specifically, as it relates to practices of postmortem donation.
The politics of death itself
In his account of biopolitics, Foucault highlights a paradox: pursuing biopolitical aims means the preservation of life can, in extremis, also become the administration of death. This he saw as the transition from biopolitics to thanatopolitics. The most absolute form of this move was seen in the quest for racial hygiene perpetrated under National Socialism in the 1930s. But beneath a strong reading that links thanatopolitics to absolutist dictatorships, state terror, and necropolitics (Mbembe 2003; also see Agamben 1995), lies a weaker reading. This reading is at once more pervasive yet it is one that has been obscured by the tendency to assume death as merely that which biopolitics seeks to avoid. Within the biopolitical project, death is just as elusive as life. Indeed, the contributions we bring together here suggest that alongside the ‘politics of life itself’ (Rose 2006) we might also need to consider the ‘politics of death itself’ (Vincent 2006), that is, an analytical frame that draws attention explicitly to the management and administration of death and, indeed, the ways that these are being shaped on a mundane level in contemporary society; these are the ‘new immortalities’ of our title. In his discussion of the evasion of ageing, Vincent (2006) considers each of five shifts in the understanding of ‘life itself’ as identified by Rose: anatomization of life into complex molecules, life as optimization, life as management and responsibilization, the policing of life through expertise, and the ‘economics of vitality’. Each of these he reads through the lens of mortality, stating that ‘if life has been biologised, fragmented, reduced to a bio-chemical essence and rendered political by new potentialities for control, then so too has death’ (Vincent 2006, under ‘The Politics of Death Itself’). Death and corporeality remain intimate matters of family and faith, yet, as we argue, they are also matters for state and national attention in ways that they have never been before. Personal beliefs about what happens after death are increasingly bound up with questions of national health and welfare policies.
In a move reminiscent of the one advocated by Das and Han (2016), we are keen to shift our analytic gaze to how death is lived as part of life. Specifically, we are interested in the ways that death is being colonized by the therapeutic and educational needs of contemporary biomedicine. Here we might extend Foucault’s original aphorism to: ‘make live and let die and make live’. The growing visibility of demands to consider the biomedical opportunities that death now presents points to novel intersections of the social morality of death with the biomedical need to secure tissue to maintain the health of citizens, and by extension the viability of biomedical education and research. One way that these concerns manifest is in the urge for citizens to self-manage their own deaths. This is now not just a religious gesture but increasingly entangled with social responsibilities to self, kin, society, and the environment (Davies and Rumble 2012). The neoliberal subjectivities that now operate in so many aspects of people’s lives would appear to be extending inexorably into death. In the articles we have assembled for this volume we demonstrate this point by conceptualizing ‘death itself’ as constituted through historically situated forms of governance and management.
Having earlier identified the heuristics of the bioregister, we now ask: what might an equivalent thanatoregister look like? Before reviewing the contribution of each of the articles to this idea, we begin with thanatocitizenship as a complement to the varieties of biocitizenship. The notion of thanatocitizenship is useful heuristically in its invitation to explore how the dead are placed both politically and socially in regimes of the living. Just as ‘bare life’ is a terrifying thing to contemplate, so is ‘bare death’. To die a ‘bad’ or ethically problematic death as a vagrant, a sans papiere immigrant, or a refugee drowning at sea is to die a death that is barely legible to the modern state but it is nonetheless one that poses a major problem in terms of classification and the inescapable materiality of the corpse. Green’s (2010, 2012) work on local responses to bodies washed up on Greek shores makes this point powerfully. She describes how the bodies of asylum seekers fleeing conflicts across the Middle East and South Asia are being found in growing numbers along the shores of Greek islands in the eastern Mediterranean. The problem these people pose for Greek authorities is not only one of being stateless but also of being dead. The disposal of these and other people without access to the thanatological dimensions of citizenship is captured in their burial in ‘mass graves’, which invoke the awful juxtaposition of anonymity with that which should be uniquely personal. Such appalling deaths point to an absence of thanatocitizenship. By contrast, the various examples of cadaveric donation described in this volume reveal a heightened recognition of thanatocitizenship, evident in the range of practices that collectively mark, recognize, and memorialise the intentions of the dead.
This point is compellingly illustrated in the piece that opens the collection. Árnason’s account of untimely deaths in contemporary Iceland describes a fundamental shift from the perception of death as the object of biomedical resistance to one of opportunity. Central to the Icelandic account is how the dead are given agency, connecting them not only to friends and relatives but also to the nation through the organs that they give up. ‘Bad’ or untimely deaths are given meaning; donors are honoured and memorialised, and they take their place as what might be thought of as thanatocitizens. The idea of the nation and the institutions of its power have a similarly key place Ådahl’s account of organ donation policy in Finland, but with quite different effects. Using debates over a revision to Finnish law, Ådahl describes a political environment in which the success of biological integration rests socially on the evasion of organ relationality. This comes at a cost however. Donor narratives largely become invisible through the prioritization of values of state solidarity. The good thanatocitizen is the one who becomes part of the emerging tissue commons, both willingly and disinterestedly. Her study shows how patient peer group discussions avoid mention of the previous ‘owner’, and how any subjectification of the organ is regarded as ‘pathological’, thus removing individual donors from both public and private narratives. If donor narratives are lost, she asks, what work can be done to recover them? In both Árnason’s and Ådahl’s accounts, the role of the nation state in preventing ‘failure’ as a biomedical outcome of death emerges. A variety of rhetorical framings are brought into play to show how not only the material body lives but also the body politic.
As we have already suggested, a theme that runs throughout all the articles is the relationship between the ‘shortage’ of tissue and new regimes of value. Around these, technologies and systems of extraction are being built up. These regimes might be thought of as ‘thanatocapital’, worlds of subtle thanatovalues for which there are novel strategies for increasing not just bioavailability but thanatoavailability. The article by Simpson illustrates this nexus of concerns in the context of eye donation practices in contemporary Sri Lanka. His piece traces the journeys of a donated cornea from a rural Sri Lankan family home through its trips on buses, to police stations and laboratories and cargo flight cockpits, to its eventual donation site in the Middle East. Situating the account within long-term research with the Sri Lankan Eye Donation Society in Sri Lanka, Simpson examines how postmortem tissues are engaged in economies and ideologies that have their own specific value regimes and practices. Crucially, he shows how these interests are becoming inserted into quotidian mortuary practices and beliefs.
Finally, our collection highlights what we might think of as ‘thanatosociality’, a term that highlights the intensification of social activity around death and how existing forms of obligation towards the dead (expressed in terms of decency, respect, dignity) are being elided with new kinds of negotiation and responsibility for their management and appropriate disposal, including an emergent concern with responsible recycling of the body after death. With these practices come new forms of association that move beyond biosociality (that is, the collective and associative arrangements for managing everyday life in relation to a condition) and on to social arrangements that incorporate death into life in novel ways.
In the first of three pieces that deal with whole body donation to medical schools, Douglas-Jones provides an ethnographic account of the ‘Silent Mentors’ programme in Hualien, Taiwan. Like other contexts in which whole body donation takes place for medical education, the promotion and improvement of medical pedagogy is limited by the supply of cadavers for medical students to explore through dissection. Where the Taiwanese initiative differs from whole body donation programmes elsewhere is in the refusal of anonymity for the cadaver and, indeed, the expectation of measures that draw together medical students, bereaved families, and the deceased. One of Douglas-Jones’s conclusions relates to the role that the cultivation of this thanatosociality plays in the making of ethical and empathetic doctors who are informed by an inner moral compass, provided by their first patient, their Silent Mentor cadaver, rather than external regulations.
In her contribution, Olejaz picks up on similar themes but in a very different setting. Her article focuses on anatomy labs in Denmark and, after Cheryl Mattingly (2014), examines how these operate as ‘moral’ labs. In her account she highlights the centrality of the cadaver within medical training programmes, and she draws attention to the ‘social afterlife’ of the donated cadaver, particularly to how the experiences of Danish students amount to an ‘ethics training in practice’. This contribution puts forward the argument that if an anatomy lab is regarded also as a moral lab, then ‘right and wrong’ may be as much felt as explicitly taught. Her ethnographic material highlights the ambiguities around, and of, the donated body. Olejaz’s contribution furthers and refines the arguments made by Prentice (2012) regarding the ontological thing–person duality with which students of medicine must grapple. Continuing the theme of cadaveric donation for medical education, Hallam explores the tangled relationship between body donation, dissection practices, and memorialisation in a British university anatomy department. She describes the use of donated cadavers for medical education through the theoretical lens of ‘relational anatomy’, which allows her to foreground an evolving sociality centred on the cadaver. She describes the way that this sociality is enacted among those who receive donated bodies and subsequently by those who administrate the formalities for families. Furthermore, in her attention to different materials used by students, we learn both about the range of mechanisms through which students are educated and the relations through which cadavers for dissection are acquired and handled. A major strand of interest in cadaveric donation concerns education, including the techniques and technologies by which cadavers can be visualized, and Hallam’s work draws out the profoundly relational labour undertaken by medical students to compile anatomical knowledge from a number of qualitatively different sources.
In these ethnographic accounts can be seen the emergent ways that death is managed and administered. Just as Foucault’s biopolitical project initiated reflection on the political, social, and economic consequences of developments in the medical and life sciences, the thanatopolitical project sketched here recentres death in a changing biomedical landscape. Bringing together the political, social, and material aspects of the postvital body, these accounts of ‘new immortalities’ capture a sense of what may be thought to endure beyond death and how this is currently being harnessed to the biomedical imaginary. We return to these thoughts in the afterword.
About the authors
Bob Simpson is Professor of Anthropology at Durham University. He has carried out fieldwork in Sri Lanka and the United Kingdom, focusing on the practical and ethical implications of developments in the life sciences, such as new reproductive technologies, transplantation, and prenatal diagnosis. He convenes the interdisciplinary New Immortalities network, which is aimed at stimulating reflection on death, donation, and the complex imaginaries that are now forming around the secondary use of organs, tissues, and whole bodies in the twenty-first century. See https://www.dur.ac.uk/anthropology/newimmortalities/ for more information.
Rachel Douglas-Jones is Associate Professor at the IT University of Copenhagen, where she co-directs the ETHOSLab. Her research interests lie at the intersection of ethics, computation and biomedicine, and are informed both by anthropology and science and technology studies. Her work has focused on ethics as a form of governance over science, examining specifically the form of the ethics review committee and research ethics capacity building initiatives in the Asia Pacific region. New research projects concern the implementation of research integrity frameworks in Denmark, comparative research ethics capacity building in Asia and Africa, the practicalities and politics of biomedical big data and the ethics and technicalities of global clinical trial infrastructures.
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