Showing posts with label Cryonics. Show all posts
Showing posts with label Cryonics. Show all posts

24 February 2025

Mortality

'Representations of Immortality and Institutions in 21st-Century Popular Culture' by Devaleena Kundu and Bethan Michael-Fox in Kate Woodthorpe, Helen Frisby, and Bethan Michael-Fox (eds), Death and Institutions: Processes, Places and the Past (Bristol University Press, 2025) 161-175 comments 

This chapter examines how death and institutions intersect in four 21st-century popular cultural representations of immortality. While the routes to immortality in the four texts examined are varied, the chapter shows how powerful and elite institutions are positioned as central in all of these cultural representations of immortality on screen and in literature. Considering one film documentary – Freeze Me (2006), two television series – Torchwood: Miracle Day (2011) and Upload (2020–) – and one narrative fiction novel – Death at Intervals (2008), the chapter shows how a range of popular cultural narratives produced between 2005 and 2020 effectively function as spaces through which to negotiate shifting ‘real life’ anxieties about the medical and political institutionalization of death in the early 21st century. Questions about whether institutions can be trusted and about the roles they play in deciding what life and death are, as well as who gets to live and die, come to the fore across this range of popular cultural examples, demonstrating how popular cultural texts can function as spaces through which to negotiate sociocultural concerns about mortality. The chapter shows how the institutions that feature in these four texts take on a shadowy form with often nefarious motivations and ties to economic and social privilege.

01 November 2024

Cryo and Biopolitics

'Anticipating and suspending: the chronopolitics of cryopreservation' by Thomas Lemke in (2024) BioSocieties comments 

The article brings together two disparate and so far largely disconnected bodies of research: the critical analysis of cryopreservation technologies and the debate on modes of anticipation. It starts with a short review of the state of the research on the concept of cryopolitics. In the next part I will suggest two revisions. I will problematize the idea of latent life and the focus on potentialities that have been central to the research on cryopolitics so far, proposing to shift the analytic frame to suspended life on the one hand and to modes of anticipation on the other. I argue that cryopreservation practices are part of contemporary technologies of anticipation. They are linked to a politics of suspension by mobilizing a liminal biological state in which frozen organisms or biological material are neither fully alive nor ultimately dead. This seeks to avert and/or enable distinctive futures by extending temporal horizons and keeping vital processes in limbo. ... 

In the past ten years, a number of STS scholars have proposed the term “cryopolitics” or “cryopower” to capture the profound socio-material changes introduced by technologies producing low temperatures (Friedrich and Höhne 2014; Kowal and Radin 2015; Radin 2017; Friedrich 2017).Footnote 1 The notion seeks to address the radical and ongoing transformation of temporal trajectories and spatial configurations in contemporary societies engendered by cryopreservation practices. In this understanding, cryobiological processes fundamentally affect the politics of life in the twenty-first century. They undermine conventional understandings of life and give rise to novel modes of controlling, enhancing and processing organic matter. 

This article seeks to explore and further advance the “cryopolitical account” (Peres 2019, p. 77) by connecting it to the debate on modes of anticipation. This growing literature has emerged in the past two decades in STS and beyond, arguing for the need to explore how different futures are enacted through socio-material assemblages (Adams et al. 2009; Anderson 2010; Alvial-Palavicino 2015; Poli 2017; Davis and Groves 2019). Bringing together these so far largely disconnected bodies of research, I propose the concept of a politics of suspension. It builds on the idea of cryopolitics but shifts the analytic focus to the chronopolitical strategies enacted by cryopreservation and cryobanking practices that modify and mould the order of time to accommodate future events. 

I start with a short review of the state of the debate on cryopolitics. The next part suggests two revisions. It problematizes the idea of “latent life” as well as the focus on potentialities that have been central to the literature so far, proposing to shift the analytic frame to “suspended life” on the one hand and to modes of anticipation on the other. I argue that cryopreservation practices are linked to a politics of suspension by mobilizing a liminal biological state in which frozen organisms or biological material are neither fully alive nor ultimately dead. They are an integral part of contemporary technologies of anticipation as they seek to avert and/or enable distinctive futures by extending temporal horizons and keeping vital processes in limbo. 

Reassessing cryopolitics: a brief review of the debate 

The term cryopolitics was first introduced almost twenty years ago by Michael Bravo and Gareth Rees to draw attention to the increasing geostrategic importance of the Arctic region as melting polar sea ice opens up new political conflicts over material resources (Bravo and Rees 2006; Haverluk 2007; Bravo 2017). In the past decade, however, scholars have proposed a more comprehensive understanding of the term that directly follows Foucault’s analytics of biopolitics. Friedrich and Höhne (2014) and Kowal and Radin (2015; Radin and Kowal 2017) have argued that cryopolitics is an extension of the Foucauldian concept. Foucault famously contrasts biopower with sovereign power. While the latter is characterized by taking life or letting live, the former operates by technologies that foster life or let die (Foucault 2003, p. 241). Cryopolitics marks an important intensification of the biopolitical problem space as it is organized around the imperative to “make live and not let die” (Friedrich and Höhne 2014, p. 2, emphasis in orig.; Kowal and Radin 2015; Friedrich 2017; Radin and Kowal 2017).Footnote 2 Thus, cryopolitics is defined by interrupting processes of development and decay, opening up a “unique biological state between life and death” (Neuman 2006, p. 260). 

In this understanding, cryopolitics serves as a “theoretical frame brought into existence by the practice of freezing” (Kowal and Radin 2015, p. 68). It does not work as a conceptual alternative to the classical understanding of biopolitics but rather represents “a mode of Foucault’s biopolitics” (8ibid.; Friedrich and Höhne 2016; Radin and Kowal 2017). While this reading stresses continuity and consistency, the concept of cryopolitics also significantly enlarges the original understanding of biopolitics. In line with empirical insights and theoretical propositions by STS scholars and many other researchers investigating the impact of contemporary biosciences, the analytics of cryopolitics is marked by three important extensions. First, it shifts the focus of investigation beyond the disciplining of the individual body and the regulation of the population—the “two poles of development” (Foucault 1978, p. 139; 2003) in Foucault’s understanding of biopolitics. Cryopolitics opens up the analytic frame to include the control and enhancement of biological matter. Beyond the individual body of a human subject and the collective body of the population, it includes “bits and pieces from human bodies” (Hoeyer 2017, p. 207) such as gametes, tissue or DNA. Secondly, the concept of cryopolitics undermines any attempt to restrict biopolitics to “the vital characteristics of human existence” (Rabinow and Rose 2006, pp. 197–98; Rose 2007). Rather, it attends to the “totality of life” (Friedrich and Höhne 2014, p. 38; Friedrich 2020a, p. 247) and the multiple ways in which biopolitical mechanisms also affect nonhuman species, seeking to govern animal and plant life (Haraway 2008; Friese 2013; Wolfe 2013; see also Lemke 2021). Third, while the colonial legacy of biopolitics only plays a minor role in Foucault’s work, the analytics of cryopolitics often engages with colonial and racialized rationalities underpinning cryopreservation practices. One important area of research has been the International Biological Program (IBP) that ran from the 1960s through to the mid-1970s. Using mechanical laboratory freezers and techniques of cold storage, the anthropologists, biologists and physicians involved in the program collected hundreds of thousands of blood samples from indigenous communities in many countries, whose peoples were considered to be both unchanged by civilization processes and threatened by extinction. These collections were assembled in order to determine biological traits of individuals and populations often conceived of as ‘primitive’ to promote knowledge for the future of mankind. However, as TallBear notes, this research initiative (as well as many others with similar objectives) that claims to preserve indigenous DNA for the study of human diversity “is predicated on indigenous death” (TallBear 2017, p. 182; Radin 2013; Kowal et al. 2013; Kowal and Radin 2015; Radin 2017). 

In the past decade, the concept of cryopolitics has attracted a lot of academic interest, especially after the publication of an edited volume on the subject by Radin and Kowal (2017). Cryopolitics: Frozen Life in a Melting World contained a number of important contributions covering topics such as biosecurity (Keck 2017), global food chains (Friedrich 2017) and species conservation (van Dooren 2017; Chrulew 2017; Kirksey 2017). In the wake of this seminal publication, the “cryopolitical analytic” (Radin and Kowal 2017, p. 4) was fruitfully extended to other relevant research fields. It has been used to analyse the control of temperature in urban spaces (Höhne 2018), to investigate the governance of frozen seeds repositories (Peres 2019), to assess the impact of cryogenic technologies in reproductive policies in Scandinavian countries (Kroløkke et al. 2019), to study the practices of egg cell freezing and the potential use of cryopreserved oocytes for biomedical research (Friedrich 2020b), to follow resurrection projects in Russia that seek to bring the mammoth back to life (Wrigley 2021), and to trace the technoscientific networks of human milk donation and banking in Spain (Romero-Bachiller and Santoro 2023). 

The “cryopolitical framework” (Kroløkke 2019, p. 541; Peres 2019, p. 84) often puts forward two fundamental and interconnected claims. Firstly, cryopolitics is characterized by “the perpetual deferral of death” (Kowal and Radin 2015, p. 68; see also Radin and Kowal 2017, p. 7) and draws on a state of “latent life” (Friedrich and Höhne 2014; Kowal and Radin 2015; Radin 2017; Kroløkke 2019; Romero-Bachiller and Santoro 2023). According to this reading cryopreservation practices make it possible to store organic material by cooling it to sub-zero temperatures for an indefinite period of time, resulting in a “life without death” (Kowal and Radin 2015, p. 69, emphasis in orig.). Secondly, the concept of cryopolitics designates the “potential of life or life forms that had been redirected in time through the use of low temperature” (Radin 2017, p. 4; 2013; see also Friedrich 2020b, p. 340). In this understanding, cryopreservation practices store potentialities available for future use, opening up scientific or medical perspectives as well as commercial options. 

In the following, I propose a two-fold analytical shift to clarify and complement the original reading of cryopolitics. First of all, I will argue that in order to conceive the mode of operation of cryopreservation practices, “suspension” is more appropriate than “latency”. In contrast to “latent life”, “suspended life” accounts for the deferral of both death and life and better captures the liminal biological state of frozen organic material. Building on and extending the existing debate on cryopolitics, I seek to offer a conceptual clarification that suggests shifting the analytic focus from latency to “suspended life” (Lemke 2022). The idea of suspension in cryopreservation practices has been fruitfully explored before in conceptual reflections (Hoeyer 2017) as well as in empirical studies (Romero-Bachiller and Santoro 2023), but so far it has not been consistently distinguished from the notion of latency and its chronopolitical dimensions still lack a systematic consideration. Secondly, I suggest situating cryopreservation practices within the current “regime of anticipation” (Adams et al. 2009; Mackenzie 2013; see also Dolez et al. 2019). Analysing how cryotechnologies are mobilized within anticipatory rationalities displaces the promissory focus on potential with a practical interest in addressing future concerns and catastrophic risks.

12 August 2024

CryoRisks

'Life-Suspending Technologies, Cryonics, and Catastrophic Risks' by Andrea Sauchelli in (2024) 30 Science and Engineering Ethics comments

 This paper explores one way of empowering future generations by giving them causal efficacy over at least some members of their previous generations. Such an empowering, I argue, would be beneficial, as it contributes to diminishing a catastrophic and existential risk factor, namely the expressions of insufficient concern that some present influential individuals and institutions demonstrate towards the welfare of future people—a form of what I call ‘generational egoism’. The type of technology analysed in this paper, which would reduce the temporal parochialism of the present generation, can be characterised as a life-suspending or life-extending technology, and cryonics is one of the most well-known examples. 

Although this essay focuses on the risks posed by climate change, I find it useful to deploy the broader concepts of ‘catastrophic’ and ‘existential risk’ to discuss the range of benefits related to cryonics or other relevantly similar life-suspending technologies. The reason is that such technologies may mitigate not only climate change-related risks but also risks of a broader and more heterogeneous category, namely, those risks related to some present individuals’ or collectives’ lack of (sufficient) concern for future people. More specifically, my argument includes the claim that in the case of certain catastrophic and existential risks, a general attitude—a form of generational egoism—is at least a risk factor, where a risk factor is something that causally increases the likelihood of a risk (see final appendix). In the case of an attitude or motivation being a risk factor, I will mean that such an attitude or motivation underlies actions increasing the likelihood of certain risks. However, under specific circumstances, some features of this attitude can become a security factor (i.e., something that causally decreases the likelihood of a risk). Cryonics or other similar life-suspending technology, which can give rise to such circumstances, may thus be considered a security factor for at least certain catastrophic and existential risks or risk factors. If I am right, insofar as we are interested in promoting what is beneficial to humanity, we would have a good (defeasible) reason to invest more widely in developing and making more available such technologies. 

Unfortunately, at least in the academic philosophical literature, the ethical and practical impact of such technologies seems to be severely under-researched. I think that this is unfortunate and that, since life-suspending technologies would be extremely beneficial to humanity, they deserve more discussion. This paper is structured as follows. The first section briefly introduces the notions of catastrophic and existential risks. The second section of the paper clarifies what is meant by ‘cryonics’. The key aspect of cryonics relevant to this paper is that it may allow people existing at a certain time to somehow recommence or restart their lives at a later time, perhaps even significantly later (e.g., at a time significantly distant temporally from when they started the procedure). I wish to emphasise that cryonics (1) is here discussed qua life-suspending or life-extending technology—any other technology with the same functions would play the same theoretical role in this paper—and (2) need not be understood as a technology primarily intended to enable humans to achieve immortality. Even if we could never become immortal or everlasting, we would still have reasons to develop and make life-suspending technologies widely available. The third section outlines the general argument that cryonics is a security factor for a heterogeneous set of catastrophic and existential risks. The fourth section focuses on one of these risks: climate change. In the same section, I articulate in more detail some aspects of the problem of climate change that relate to its intergenerational character and that would be mitigated by the widespread use of cryonics. Some objections are then discussed in the final section.

11 November 2023

Cryo and Post-mortem rights

'Cryopreservation and current legal problems: seeking and selling immortality' by Alexandra Mullock and Elizabeth Chloe Romanis in (2023) 10(2) Journal of Law and the Biosciences comments 

 Cryonics, the ‘freezing’ of the human body after death in the hope of reanimation in the future, remains a remote possibility, and yet it is becoming a more popular choice. There has been much academic discussion of the ethics of cryopreservation; however, the legal problems have received little attention. There are, however, several potential current conflicts that might arise, as was illustrated by the case of JS in England, in which a 14-year-old girl who sought cryopreservation against her father’s wishes. In the USA, there have been disputes within families about cryonic preservation, and between cryonics organizations and loved ones of the deceased when there is negligent preservation. Cryopreservation raises questions concerning the law on death and posthumous interests, property in the body, contract law, and (potentially) negligence. We argue that, in the absence of proper regulation, cryonics organizations may be able to exploit the dying and dead. The potential legal problems that we have identified in relation to the law in England and Wales demonstrate that the law is ill-equipped to protect the interests of the dead and their next of kin. 

Waking the dead after cryopreservation remains science fiction. While freezing human cells and tissue is well established in medicine—particularly freezing gametes or embryos for fertility treatment—life after death via cryopreservation remains impossible. Despite the state of the science, people are opting for this technology and entrusting their ‘remains’ to cryonics companies, and interest in doing so is increasing. Individuals can arrange for either their entire body or their head to be frozen after death, and thereafter preserved with the hope that reanimation (and cure) is eventually possible. The question of whether such a hope will ever be fulfilled is not our concern and this article does not attempt to engage with unknown futures and science fiction. Rather we are concerned about the current legal uncertainty over preserving the dead in this way and the potential for legal conflict this raises for the living relatives of the deceased in the present. In this paper, we consider the legal uncertainties in the jurisdiction of England and Wales. 

An example of conflict over cryopreservation was seen in Re JS, in which a 14-year-old-girl with a rare form of terminal cancer successfully sought a court order to allow her body, after death, to be cryonically preserved without the approval of her estranged father. While this case set no precedent approving or encouraging cryonics, questions about the way the process would be handled prompted Jackson J to conclude that proper regulation of cryonics was needed. As JS illustrated, the current law is struggling to accommodate the cryonic process, the interests of those preserved and their relatives. The conflict in JS reveals how those with an interest in what happens to the body of a deceased relative may seek to prevent cryopreservation. Moreover, because the process and maintenance of cryonics involves an ongoing obligation to preserve the body of the deceased, whose legal rights died with them, questions arise, and are addressed in this paper, over the nature of any legal obligations to the next of kin and importantly, who has the legal right to possess the preserved body or head in the event of a dispute. 

While the ethics of cryonics have been considered in some depth, the legal questions have received less attention. Perhaps this is unsurprising. Conway takes the view that so few people in the UK are choosing cryonic preservation that regulating to address such rare needs is ‘not such an urgent task’. However, we believe that examining the issues to better inform the debate before regulation becomes a more urgent task is a worthwhile exercise. Some people are already using this technology, and the potential for legal problems and conflict is significant. Many of the legal issues we explore in this article are speculative, but such an investigation is necessary to consider what may be problematic about cryonics, and to consider potential legal solutions. Furthermore, because of the importance attached to respecting the wishes and the remains of the dead, and the logistics of preserving and storing the dead in this context, cryopreservation raises particularly sensitive and potentially disturbing issues. Such issues require thorough consideration before a court is compelled to resolve a dispute concerning cryopreservation. 

There is nothing to prevent individuals in England and Wales from choosing cryonic preservation after death, provided they can pay for it and make the necessary arrangements to be frozen and stored at a cryonics organization. There is, however, somewhat of a legal vacuum when it comes to the potential legal problems or conflicts between interested parties surrounding cryonic preservation. Consequently, it is important to examine problems that have arisen — in Re JS and in the USA — and to speculatively consider foreseeable legal problems related to use of technology in advance of such conflicts materialising in the jurisdiction of England and Wales. 

In this article, we first consider how the initial arrangements are conducted with the relevant organizations and the challenges of ensuring that cryopreservation ensues, particularly in England and Wales. These complications may arise while the person intending to become a cryon is still alive/dying and thus is a legal person. We then discuss ‘conflicts about cryopreservation’— namely, what happens where family members oppose cryopreservation (even though favored by the dying/dead individual), or where the state has requirements for bodily treatment/investigation after death, or, if a problem arises with the process immediately after death. We then consider ‘conflicts in preservation’—namely, disputes between the dead/their next of kin and cryonics organizations where there is a failure to cryonically preserve a body, or the process is in some way negligent. All these disputes are complicated because they often occur once the person who had wanted to be preserved is no longer alive, and thus no longer a legal person. Finally, we consider ‘disputes after preservation’—these are primarily questions of who, in the event of a dispute, has the right to possess, or perhaps ‘own’ a cryopreserved body when that body (definitively no longer a legal person) effectively becomes a chattel. While the general rule is that the body is not property, we argue that cryonic preservation could transform human remains into property. While the family initially has a strong claim in deciding what happens to the body in terms of how the body is disposed of, once the cryonic organization takes possession and exercises skill in preserving the body, the issue of ownership becomes unclear. 

As Re JS illustrated, people may opt for cryopreservation as a way of dealing with or processing their death, perhaps as a means of obtaining some comfort and hope about the end of their life. Our analysis demonstrates that this choice makes them incredibly vulnerable in several ways. We highlight how, without proper regulation in a number of areas, cryonics organizations are able to exploit the dying and dead, and potentially also create significant legal problems, with associated emotional distress, for the family of the deceased person.

'What Remains? Human Rights After Death' by Claire Moon in Ethical Approaches to Human Remains (Springer, 2020) 39-58 comments 

This chapter is concerned with the human rights of the deceased victims of mass atrocity. It addresses these rights in the context of forensic anthropological work to establish the individual and collective identities of the victims. This work became historically and politically signi cant in the later decades of the twentieth century in the context of attempts to determine the numbers, identities, and cause of death of victims of state crimes and violent con ict, return their bodies to family members, and contribute evidence to legal trials for crimes such as crimes against humanity, genocide, torture, and enforced disappearance. Key amongst these efforts were attempts to recover and establish the identities of the dead who were subjected to torture and enforced disappearance in Argentina in the mid-1980s, and ongoing efforts to return human remains to families of the dead in the former-Yugoslavia following the wars of the 1990s. Our moral obligations to the dead in these contexts beg a profound and comprehensive ethical approach. With this in mind, this chapter addresses two key questions: do these dead have human rights? And if so, which speci c rights do they have? This chapter puts forward some provisional lines of enquiry and argumentation for consideration. It provides resources and evidence — historical, legal, and forensic — in support of such rights, and makes several suggestions regarding which rights might be developed with respect to the dead. 

Introduction My contribution to this volume is expressly concerned with the rights, or human rights, of the deceased victims of mass atrocity. It concentrates on certain ethical issues arising out of the archaeology of mass violence, which means that it addresses the human rights that arise in the context of mass grave exhumations and humanitarian efforts to establish, by forensic means, the individual and collective identities of the victims. This kind of work became historically and politically signi cant in the later decades of the twentieth century in the context of determining the numbers, identities, and cause of death of victims of state crimes and violent con ict, returning their bodies to family members, and contributing evidence to legal trials for crimes such as crimes against humanity, genocide, torture, and enforced disappearance. Key amongst these efforts were attempts to recover and establish the identities of the deceased individuals who had been tortured and subjected to enforced disappearance in Argentina in the mid-1980s; ongoing efforts to return human remains to families of the dead in the former-Yugoslavia in the long aftermath of the wars of the 1990s; the International Criminal Tribunal for Rwanda’s (ICTR) investigation into the 1994 genocide; ongoing exhumations of Spain’s Civil War graves; the trial for genocide of Guatemala’s former President Rios Montt in 2013; and current efforts by human rights, forensics, and family organisations to establish the numbers and identities of victims of torture, murder, and enforced disappearance perpetrated by criminal gangs and state security forces in the context of Mexico’s war against organised crime. ... 

I will start by reprising my two questions: do the dead have human rights? And if so, which rights do they have? These seemingly simple questions are hugely controversial and invite wildly varying responses. To date I have put them, informally, to a range of professionals and experts including international lawyers and forensic scientists. I have been faced with radically polarised responses to the rst of these questions, ranging from ‘what a ridiculous question! Only the living can have human rights’, to ‘what a ridiculous question. Of course, the dead have human rights!’. When pushed, my interlocutors have been unable to elaborate compelling justications for their (primarily, I think) instinctive responses, although some have ventured to articulate which rights the dead might have a claim to (and I return to this in the closing section of this chapter). These polarised responses demonstrate the need to address these two questions and I would argue, following Marcel Mauss ([1935] 1973, 70), that it is“generally in these ill-demarcated domains that the urgent problems lie”. There is no doubt in my mind that these are, now, urgent questions. 

Arguments about the rights of the dead have, traditionally, been conducted within the fields of law and medical ethics in relation to property rights (Smolensky 2009) and organ and tissue donation (Boddington 1998; Emson 2003; Harris 2003; See the Colibrí Centre (2018) in Tucson, Arizona, for its work on migrant death on the US/ Mexico border, and the Mediterranean Missing (2018) and Last Rights (2018) projects, amongst others, who work on migrant deaths on Europe’s borders. The International Committee of the Red Cross (2017) also provides support to families of missing migrants. 

Attempts to establish the human rights of the dead are scant, and have so far attracted philosophical interest but have escaped philosophical justification. As I see it, this is at least partly because the dead are interpreted within a (generally) liberal scheme of argumentation within which they are claimed to have no interests. 

This scheme of understanding does not, inevitably, accommodate different cultural interpretations of what death means. For example, some animistic beliefs maintain that ‘the spirit’ survives physical death and thus, within a particular cultural script, may be seen to be in possession of certain interests. But let us for the sake of argument agree that the dead have no interests. If that is the case, how can they possibly benefit from rights? I will return to interests and bene ts at the end of this chapter, but at this point I simply want to suggest that we advance further with the argument by exploring it empirically rather than philosophically. This means, following Durkheim ([1895] 1982), that we approach and interpret human rights as ‘social facts’: as values and norms that shape (permit and constrain) human action and that can, at some level, be observed and documented. This approach requires us to eschew metaphysical or philosophical ‘groundings’. It is much more prosaic. It maintains that human rights exist in the world insofar as people behave in accordance, and can be observed to behave in accordance, with the principles that human rights set out. After all, human rights are as much a practical activity as they are one of principle, and practical activity is as constitutive of rights as is (philosophical) reasoning. Such an approach would maintain that the dead have human rights insofar as people act as though they have rights, and would require an empirical demonstration of those actions, such as evidence of behaviour that is shaped by the idea that the dead have human rights. 

An immediate and obvious problem arises. The dead cannot be rights claimers, and neither can they be bearers of responsibilities. But, I would argue, they can be rights holders insofar as the living behave as if they have obligations towards the dead, treat them as if they have rights, and confer rights upon them in practice. Consequently, in order to answer the question‘do the dead have human rights?’ it becomes necessary to enquire into the behaviours of the living towards the dead. Specifically, it requires investigation of the histories, protocols, and practices out of which the human rights of the dead appear to be emerging, and any existing principles that appear to confer rights upon the dead. 

There is no single human rights document to date that explicitly refers to the human rights of the dead. However, what I show in what follows is that there are rich resources in history, law, and forensic practice that already bestow, if at times subtly, human rights on the dead. These resources suggest that the human rights of the dead already exist both in principle and in practice. My intention is to divulge and make visible this so far subtle range of resources and practices that point to the human rights of the dead by referring to (a) important histories such as the births of modern humanitarianism and human rights; (b) legal guidelines regarding the treatment of the dead, and (c) the regulations governing the forensic exhumation and identification of human remains. My argument is structured in three parts. The first part demonstrates how the dead were central to the histories of contemporary humanitarianism and human rights, the second part takes a look at legal codifications, specifically in International Humanitarian Law, of the ‘right’ treatment of the dead, and the third part investigates protocols used by forensic practitioners which govern the recovery and identification of the mass dead victims of war and atrocity.

06 November 2021

Burgers into cow?

Earlier this year I had an article in Canberra Law Review on the legal status of cryonics, ie the practice of what one critic mordantly likened to purportedly turning frozen hamburger back into a live cow, complete with the moo. In July, under the heading 'The Cryonics Industry Would Like to Give You the Past Year, and Many More, Back', the New York Times featured a characteristically uncritical article on cryonics - in other words cold storage of cadavers as the basis for eventual 'reanimation'. 

It states 

 The business of cryopreservation — storing bodies at deep freeze until well into the future — got a whole lot more complicated during the pandemic. 

When an 87-year-old Californian man was wheeled into an operating room just outside Phoenix last year, the pandemic was at its height and medical protocols were being upended across the country. 

A case like his would normally have required 14 or more bags of fluids to be pumped into him, but now that posed a problem. Had he been infected with the coronavirus, tiny aerosol droplets could have escaped and infected staff, so the operating team had adopted new procedures that reduced the effectiveness of the treatment but used fewer liquids. 

It was an elaborate workaround, especially considering the patient had been declared legally dead more than a day earlier. He had arrived in the operating room of Alcor Life Extension Foundation — located in an industrial park near the airport in Scottsdale, Ariz. — packed in dry ice and ready to be “cryopreserved,” or stored at deep-freeze temperatures, in the hope that one day, perhaps decades or centuries from now, he could be brought back to life. 

Alcor, which has been in business since 1972, adopted new rules in its operating room last year that restricted the application of its medical-grade antifreeze solution to only the patient’s brain, leaving everything below the neck unprotected. 

In the case of the Californian man, things were even worse because he had died without completing the normal legal and financial arrangements with Alcor, so no standby team had been on hand for his death. By the time he arrived at Alcor’s facility, too much time had elapsed for the team to be able to successfully circulate the protective chemicals, even to the brain.

Ouch 

That meant that when the patient was eventually sealed into a sleeping bag and stored in a large thermos-like aluminum vat filled with liquid nitrogen that cooled it to minus 320 degrees Fahrenheit (minus 196 Celsius), ice crystals formed between the cells of his body, poking countless holes in cell membranes.

Apparently that doesn't matter, with the article reporting that Max More, the 57-year-old former president of Alcor, said that the damage caused by the “straight freeze” could probably still be repaired by future scientists, especially if there was only limited damage to the brain, which is often removed and stored alone in what is known in the trade as a “neuro” preservation. 

 “The important stuff is up here as far as I am concerned,” he said, pointing to his sandy-blond crop of hair in a Zoom call. “That is where my personality lives and my memories are … all the rest is replaceable.” 

Presumably his consciousness resides in his head rather than the follicles. 

Onwards to another incident that rtaises questions about unconscionability and ethics, with the Times stating 

The relatives of one client failed to inform Alcor that he had died and instead had him embalmed and buried in Europe. When Alcor found out a year later, it confirmed that his contract said he wanted to be cryopreserved no matter how much time had elapsed, so the company got a court order and had the body returned to Arizona.

After embalming and a year in the ground we might be more than usually sceptical about the prospects of a sure and certain resurrection. 

 Russian cryo service KrioRus - which appears to be operating out of premises less impressive than my garden shed - has meanwhile been in the news, with Slate reporting

Two weeks ago, police in the Moscow region received a call about an unusual robbery and were ordered to stop a truck belonging to the suspect. On a platform attached to the vehicle, they found containers with frozen bodies. They belonged to people who agreed—and paid money—to be frozen after death in the hope of being revived in the future, a practice called cryonics. .... The woman who allegedly tried to steal bodies was Valeria Udalova, a former CEO of the cryonics company KrioRus, founded in 2006. The man who accused her of theft was her ex-husband, Danila Medvedev, also a former CEO of KrioRus. Both Udalova and Medvedev now own separate cryonics businesses and are in the midst of a battle over 81 bodies of KrioRus clients. 

It came to a head on Sept. 7, when Udalova reportedly broke into the cryostorage near Moscow, which is now under the control of Medvedev (though Udalova claims that she rents this facility). According to the Medvedev`s team, Udalova and her partners cut through a metal wall at the lab, dumped liquid nitrogen from containers with dead bodies, and loaded the containers, known in the industry as “dewars,” on the truck. When workers lifted the heavy vats, the dewars were bending like they were going to fall and break, as a leaked video shows; meanwhile, liquid nitrogen was pouring out and spilling on people. “Even paying much for your death in Russia can’t save you from being a part of the criminal conflict,” wrote one Facebook user who had watched the video. One of Medvedev’s partners, Dmitry Kvasnikov, claimed on Facebook on Wednesday that Udalova broke some equipment during the raid, so now it is hard to maintain dewars and refill them with liquid nitrogen. This put cryopatients “at some risk,” he said.

Hijinks about cadaver napping aside, the piece is of interest for reference to contracts 

KrioRus signs contracts with patients for 100 years; the founders believe, for some reason, that the technology to raise the dead will be discovered by the end of the century. Not just to revive them, but to return them to full health. ... But if such technology hasn’t been invented by the time the agreement comes to an end, it will be automatically extended for 25 years as many times as needed, the company promises.

29 September 2021

Cryo

In 'Thawing Out Personhood, Unconscionability and Succession in Cryonics' in (2020) 17(1) Canberra Law Review 44-77 I commented 

The adoption of cryonics poses fruitful questions about personhood, consumer protection, trusts, taxation, crime, human rights and other law. Cryonics involves the long term storage of human cadavers at subzero temperatures with an expectation that in the indefinite future the legally dead will be ‘reanimated’. The article discusses the culture and law of cryonics in relation to Australia. It draws on Martha Fineman’s vulnerability theory to critique claims by proponents of cryonics, asking whether unsubstantiated claims regarding reanimation are unconscionable and necessitate a specific statutory prohibition. The article further considers the implications for health, welfare and other law if cryonics was practical. 

Cryonics remains a matter of hope - in my opinion egregiously misplaced hope - over science, accompanied by inadequate regulation. Concerns regarding practice are evident in an item in today's Slate

 Two weeks ago, police in the Moscow region received a call about an unusual robbery and were ordered to stop a truck belonging to the suspect. On a platform attached to the vehicle, they found containers with frozen bodies. They belonged to people who agreed—and paid money—to be frozen after death in the hope of being revived in the future, a practice called cryonics. (It’s legal in Russia as well as in the U.S.; former baseball player Ted Williams’ head and body are each frozen, separately, at a cryonics facility in Arizona.) It’s unlikely cryonics will ever work. But for people who think there’s a chance, the safekeeping of the bodies can be seen as a life-or-death matter. 

The woman who allegedly tried to steal bodies was Valeria Udalova, a former CEO of the cryonics company KrioRus, founded in 2006. The man who accused her of theft was her ex-husband, Danila Medvedev, also a former CEO of KrioRus. Both Udalova and Medvedev now own separate cryonics businesses and are in the midst of a battle over 81 bodies of KrioRus clients. 

It came to a head on Sept. 7, when Udalova reportedly broke into the cryostorage near Moscow, which is now under the control of Medvedev (though Udalova claims that she rents this facility). According to the Medvedev`s team, Udalova and her partners cut through a metal wall at the lab, dumped liquid nitrogen from containers with dead bodies, and loaded the containers, known in the industry as “dewars,” on the truck. When workers lifted the heavy vats, the dewars were bending like they were going to fall and break, as a leaked video shows; meanwhile, liquid nitrogen was pouring out and spilling on people. “Even paying much for your death in Russia can’t save you from being a part of the criminal conflict,” wrote one Facebook user who had watched the video.

14 July 2020

Thawing and Access to Digital Records

As a precursor of postmodernism, Nietzsche quipped ‘Let us beware of saying that death is the opposite of life. The living is only a species of the dead, and a very rare species’. My 'Thawing-out Personhood: Australian Law and Cryonics' in (2020) 17(1) Canberra Law Review comments
The adoption of cryonics poses fruitful questions about personhood, consumer protection, trusts, taxation, crime, human rights and other law. Cryonics involves the long term storage of human cadavers at subzero temperatures with an expectation that in the indefinite future the legally dead will be ‘reanimated’. The article discusses the culture and law of cryonics in relation to Australia. It draws on Martha Fineman’s vulnerability theory to critique claims by proponents of cryonics, asking whether unsubstantiated claims regarding reanimation are unconscionable and necessitate a specific statutory prohibition. The article further considers the implications for health, welfare and other law if cryonics was practical. 
The piece begins
Lynn Stout’s elegant 'The Corporation as Time Machine: Intergenerational Equity, Intergenerational Efficiency, and the Corporate Form' offered a novel and persuasive analysis of one category of artificial person as a mechanism for transcending the finitude experienced by all natural persons. There is increasing interest in some Australian and overseas communities regarding cryonics – cold storage of humans for ‘reanimation’ at an undetermined future time – as a mechanism for transcendence on the part of natural persons. The adoption of cryonics poses fruitful questions about personhood, consumer protection, trusts, taxation, crime, human rights and other law rather than what the Stoics considered to be our mistaken fear of death. 
This article engages with questions about cryonics in relation to Australian law, arguing that existing consumer, succession and criminal law offers an effective framework for the regulation of a new technology and consequent shaping of social practice. As such it represents a substantive addition to Australian literature. 
Part I offers an introduction to cryonics, whose adherents expect that future advances in technology will enable the ‘revival’ of cadavers, in essence the unprecedented reinstitution of personhood. Part II draws on vulnerability theory in examining consumer protection issues, which range from outright fraud or negligence on the part of for-profit cryonics service providers through to questions about unconscionability in the marketing to vulnerable people of services that as of 2020 are empirically nonsensical. It touches on responsibility under Commonwealth, state and territory consumer protection and criminal law. Part III considers some implications for succession, health and welfare law if cryonics was practical. Part IV offers concluding remarks, including recommendations for coherent national regulation.
The NSW Law Reform Commission's report on Access to digital records upon death or incapacity recommends a new statutory scheme for NSW, which would allow access to a deceased or incapacitated person’s digital records in limited circumstances. 

 The Commission's Recommendations are - 

NSW needs a digital access scheme
 
2.1: A statutory scheme for NSW NSW should enact a statutory scheme that enables an authorised person to access a deceased or incapacitated person’s digital records in limited circumstances.
 
Scope and key terms of the statutory scheme
 
3.1: The scheme should apply where users are domiciled in NSW
 
The scheme should apply to a custodian, regardless of where the custodian is located, if the user is domiciled in NSW or was domiciled in NSW at the time of their death.
 
3.2: Key terms of the statutory scheme
 
The scheme should include the following definitions:
 
(1) “Authorised person” means the person with the right, under this scheme, to access particular digital records of the user.
 
(2) “Custodian” means a person or service that has, or had at the time of the user’s death, a service agreement with the user to store or maintain particular digital records of the user.
 
(3) “Custodian policy” means a statement of policy by the custodian, not otherwise incorporated in a service agreement, which relates to the digital records of the user stored or maintained by that custodian, and applies whether or not the user is alive or has capacity.
 
(4) “Digital record” means a record that: (a) exists in digital or other electronic machine-readable form, and (i) was created by or on behalf of the user, in whole or in part, or (ii) relates to the user, and the user had access to it while the user was alive, or (iii) relates to the user, and their representative had access to it during any period of incapacity, but (b) does not include an underlying asset (such as money in a bank account or the copyright in a literary work) or liability, unless the asset or liability is itself a digital record.
 
(5) “Incapacitated user” means an adult user who requires or chooses to have assistance with decision-making in relation to particular digital records of the user.
 
(6) “Online tool” means a tool provided by a custodian online that allows the user to give directions or permissions to a third party for managing the digital records of the user stored or maintained by that custodian.
 
(7) “Service agreement” means an agreement between a user and a custodian that relates to the digital records of the user stored or maintained by that custodian.
 
(8) “User” means a natural person who has entered into a service agreement with a custodian to store or maintain particular digital records of the user.
 
The authorised person and the extent of their access
 
4.1: Authorised person entitled to access a user’s digital records
 
The scheme should provide that:
 
(1) The authorised person entitled to access particular digital records of a deceased user is: (a) the person specifically appointed by the user’s will to manage those digital records: (i) in the case of a formal will, whether or not there has been a grant of representation of the will, or (ii) in the case of an informal will, only if there has been a grant of representation (b) if there is no person specifically appointed by the user’s will to manage those digital records, the person nominated through an online tool to manage those records (c) if there is no person specifically appointed by the user’s will or nominated through an online tool to manage those digital records, the executor of the user’s will: (i) in the case of a formal will, whether or not there has been a grant of representation of the will, or (ii) in the case of an informal will, only if there has been a grant of representation (d) if there is no will or no executor willing or able to act, and no person nominated through an online tool to manage those digital records, the administrator of the user’s estate (e) if no provision or order has been made, a person to whom the deceased user has communicated the access information for those digital records, but not where that person holds the access information as part of an employment or other contractual relationship involving remuneration for the activity, unless the user has indicated that the arrangement is to have effect after their death.
 
(2) The authorised person entitled to access particular digital records of an incapacitated user is: (a) any person appointed under: (i) an enduring guardianship arrangement that has effect, or (ii) an enduring power of attorney that has effect, but only in relation to those records that are: (iii) specified in the enduring guardianship arrangement or enduring power of attorney, or (iv) otherwise relevant to the person’s role either as enduring guardian or attorney (b) if there is no person appointed under an enduring guardianship or enduring power of attorney, any person appointed under: (i) a guardianship order, or (ii) a financial management order, but only in relation to those records that are: (iii) specified in the guardianship order or financial management order, or (iv) otherwise relevant to the person’s role as guardian or financial manager (c) if there is no person appointed under an enduring guardianship, enduring power of attorney, guardianship order or financial management order, the person nominated through an online tool to manage those digital records (d) if no provision or order has been made, the person with access information for those digital records, either because: (i) the incapacitated user has communicated the access information for those digital records to the person, or (ii) the person created those digital records on the incapacitated user’s behalf but not where the person holds the access information as part of an employment or other contractual relationship involving remuneration for the activity, unless that relationship is a paid carer relationship.
 
4.2: A person can apply to the Supreme Court of NSW for an order that they are the authorised person The scheme should provide that a person can apply to the Supreme Court of NSW for an order that they are the authorised person entitled to access particular digital records of the deceased or incapacitated user under Recommendation 4.1.
 
4.3: Extent of the authorised person’s access right
 
The scheme should provide that:
 
(1) For the purposes of determining the extent of the authorised person’s right: (a) “administering the deceased user’s estate” includes informal administration of the deceased user’s estate (b) “managing the incapacitated user’s affairs” includes informal management of the incapacitated user’s affairs, and (c) “deal” or “dealing” includes transferring digital records to the person entitled to them, but does not include editing the content of digital records.
 
(2) The authorised person entitled to access particular digital records of a deceased user may access and deal with those digital records: (a) subject to applicable fiduciary duties, and (b) subject to other applicable laws, and (c) subject to any terms of the following, as applicable: (i) the will (even where the authorised person is not the person named in the will), or (ii) the online tool, or (d) if there are no such terms, only for the purpose of administering the deceased user’s estate.
 
(3) If the authorised person entitled to access particular digital records of a deceased user also has authority over the user’s tangible personal property that is capable of holding, maintaining, receiving, storing, processing or transmitting a digital record, they are authorised to access and deal with the property and digital records of the user stored on it: (a) subject to applicable fiduciary duties, and (b) subject to applicable laws, and (c) subject to the terms of the following, as applicable: (i) the will (even where the authorised person is not the person named in the will), or (ii) the online tool, or (d) if there are no such terms, only for the purpose of administering the deceased user’s estate.
 
(4) The authorised person entitled to access particular digital records of an incapacitated user may access and deal with those digital records: (a) subject to applicable fiduciary duties, and (b) subject to applicable laws, and (c) subject to the terms of the following, as applicable: (i) the online tool, or (ii) an enduring guardianship or enduring power of attorney, which has effect, or (iii) the guardianship or financial management order, or (d) if there are no such terms, only for the purpose of managing the incapacitated user’s affairs.
 
(5) If the authorised person entitled to access particular digital records of an incapacitated user also has authority over the user’s tangible personal property that is capable of holding, maintaining, receiving, storing, processing or transmitting a digital record, they are authorised to access and deal with the property and digital records of the user stored on it: (a) subject to applicable fiduciary duties, and (b) subject to applicable laws, and (c) subject to the terms of the following, as applicable: (i) the online tool, or (iii) the enduring guardianship or enduring power of attorney, which has effect, or (iv) the guardianship or financial management order, or (d) if there are no such terms, only for the purpose of managing the incapacitated user’s affairs.
 
(6) In all such cases, the authorised person is deemed to have the consent of the deceased or incapacitated user for the custodian to disclose the content of the digital records to the authorised person.
 
4.4: Other obligations of the authorised person
 
The scheme should provide that:
 
(1) Where the authorised person entitled to access particular digital records of a deceased user is not the executor or the administrator of the user’s estate, they must do all things reasonably necessary to provide relevant information to the executor or administrator for the purposes of administering the user’s estate.
 
(2) Where the authorised person entitled to access particular digital records of an incapacitated user is not appointed under: (a) an enduring guardianship, or (b) an enduring power of attorney, or (c) a guardianship order, or (d) under a financial management order, they must do all things reasonably necessary to provide relevant information to a person so appointed for the purpose of managing the user’s affairs.
 
4.5: Improper disclosure of information
 
The scheme should provide that:
 
(1) It is an offence for an authorised person entitled to access particular digital records of the deceased user to disclose information about the deceased user, or another person, obtained in accessing those records, unless the disclosure is: (a) in accordance with the relevant instrument or order appointing the authorised person (b) for the purpose of administering the deceased user’s estate (c) necessary for legal proceedings (d) authorised by law (e) authorised by a court or tribunal in the interests of justice, or (f) disclosed to authorities as necessary to prevent serious risk to life, health or safety or to report a suspected serious indictable offence.
 
(2) It is an offence for an authorised person entitled to access particular digital records of the incapacitated user to disclose information about the deceased user, or another person, obtained in accessing those records, unless the disclosure is: (a) in accordance with the relevant instrument or order appointing the authorised person (b) for the purpose of managing the incapacitated user’s affairs (c) necessary for legal proceedings (d) authorised by law (e) authorised by a court or tribunal in the interests of justice, or (f) disclosed to authorities as necessary to prevent serious risk to life, health or safety or to report a suspected serious indictable offence.
 
Access procedures, liability limits and conflicting terms in custodian agreements and policies
 
5.1: Procedural requirements for access requests
 
The scheme should provide that:
 
(1) The authorised person entitled to access particular digital records of a deceased or incapacitated user may request access to those records stored or maintained by a custodian by contacting the custodian and providing proof of their authority.
 
(2) In relation to a deceased user’s digital records, the authorised person will prove their authority by providing the custodian with a copy of the following, as applicable: (a) proof of the user’s death (b) the formal will (c) in the case of a formal will that has not been proved, a statutory declaration establishing that the will is the user’s last valid will (d) the grant of representation (e) proof of the authorised person’s identity
 
(3) In relation to an incapacitated user’s digital records, the authorised person will prove their authority by providing the custodian with a copy of the following, as applicable: (a) the enduring guardianship or enduring power of attorney (b) the guardianship or financial management order (c) proof of the authorised person’s identity.
 
(4) For the purposes of Recommendation 5.1(2) and 5.1(3), a “copy” includes a copy in digital or other electronic machine-readable form.
 
(5) If, and only if, the authorised person is unable to provide proof of authority in accordance with Recommendation 5.1(2) or 5.1(3), authority will be proved by an order from the Supreme Court of NSW that states that they are the authorised person.
 
(6) A custodian may choose not to require the particular proof of authority set out in Recommendation 5.1(2) or 5.1(3). If the custodian chooses to require proof of authority, the custodian can only require a Supreme Court order where the authorised person does not provide proof in accordance with Recommendation 5.1(2) or 5.1(3).
 
(7) A custodian who receives a request from an authorised person, in accordance with Recommendation5.1, must provide access to the authorised person within 30 days of receipt of the request, unless the custodian can show that access is not technically feasible.
 
5.2: Protecting custodians from liability
 
The scheme should protect custodians from liability for acts or omissions done in good faith to comply with the scheme.
 
5.3: Protecting the authorised person from liability
 
The scheme should provide that:
 
(1) A person who: (a) purports to act as an authorised person under the scheme, and (b) does so in good faith, and without knowing that another person is entitled to be the authorised person in accordance with the scheme, is not liable for so acting.
 
(2) For the purposes of s 308H of the Crimes Act 1900 (NSW), access to or modification of restricted data held in a computer is authorised if it is done in accordance with the scheme.
 
5.4: Conflicting provisions in service agreements and policies
 
The scheme should provide that:
 
(1) Despite any other applicable law or a choice of law provision in a relevant service agreement or custodian policy, a provision in that service agreement or custodian policy that limits the authorised person’s access to particular digital records of the deceased or incapacitated user, contrary to the scheme, is unenforceable.
 
(2) Despite any provision, including a choice of law provision, in a relevant service agreement or custodian policy, the authorised person’s access to particular digital records of a deceased or incapacitated user, in accordance with the scheme, does not require the consent of the custodian and is not a violation or breach of any provision of the service agreement or relevant custodian policy.
 
5.5: NSW as the proper forum for disputes
 
The scheme should provide that, despite any forum selection term in the relevant service agreement, the courts of NSW with the relevant jurisdiction are the proper forum for disputes concerning the access to particular digital records of a deceased or incapacitated user, where the user is domiciled in NSW or was domiciled in NSW at the time of their death.
 
Changes to existing laws and other issues related to the scheme
 
6.1: Clarify that NSW succession and estate laws, and assisted decision- making laws, extend to property in digital form
 
(1) The definition of “property” in s 3 of the Succession Act 2006 (NSW) should be amended to include “property in digital or other electronic machine- readable form”.
 
(2) The definition of “personal estate” in s 3 of the Probate and Administration Act 1898 (NSW) should be amended to include “property in digital or other electronic machine-readable form”.
 
(3) The definition of “property” in s 3(1) of the Powers of Attorney Act 2003 (NSW) should be amended to include “property in digital or other electronic machine-readable form”.
 
(4) The definition of “estate” in s 3(1) of the Guardianship Act 1987 (NSW) should be amended to include “property in digital or other electronic machine-readable form”.
 
6.2: Amendments to NSW privacy laws to allow for the operation of the scheme
 
Amendments should be made to NSW privacy laws about accessing and managing personal information, to allow for the operation of the scheme.
 
6.3: Education about digital records and their management
 
Institutions and organisations already educating the community and legal practitioners about succession law, administration of estates, and assisted decision-making laws, should incorporate into their education programs information about digital records, and how they can be managed following a person’s death or incapacity.
 
6.4: Custodian procedures for access requests
 
Custodians should have transparent processes for handling access requests.

21 July 2019

Regenerative Medicine and Cryonics Litigation

The Leading Innovation: The UK’s ATMP Landscape report from the Alliance for Regenerative Medicine (ARM) and UK BioIndustry Association comments
The UK is a cornerstone in the international life sciences community, and advanced therapy medicinal products (ATMPs) are a fast growing part of the UK economy. The UK cell and gene therapy industry employs 1,500 people; by 2035, the cell and gene therapy industry could be worth £10B and provide 18,000 jobs. 
This report is intended to provide an overview of the current ATMP sector landscape in the UK. The growth in this industry highlights the need for coordinated efforts to promote regulatory pathways for safe and effective products, develop and implement innovative reimbursement options, address challenges in scale-up and manufacturing, and foster international policy convergence to ensure that patients across the globe are able to access these products in a timely manner
Key takeaways are
1 The UK is a leading source of innovation in the research and development of advanced therapy medicinal products (ATMPs) in Europe. 
2 There is strong government support for scientific innovation, capital formation, and patient access to cell and gene therapies in the UK. 
3 There is significant investment in the UK to support the development of these life-changing therapies. 
4 The clinical pipeline in the UK, both in terms of UK-based companies and other companies interested in clinical development in the UK, is robust and growing. 
These therapies are already positively impacting thousands of patients worldwide. In order to ensure that patients in the UK and globally can continue to access these transformative therapies, it is imperative that stakeholders from across the sector continue to promote a positive environment to support the research, development, approval, and commercialisation of ATMPs. ... 
The realisation of the immense therapeutic potential will require stakeholders to: 
1 Support scientific research to develop and advance both cell and gene therapies
and ancillary processes, including manufacturing and scale up. 
2 Foster economic development and the creation of a skilled workforce to promote the continued growth of this industry in the UK. 
3 Cultivate a positive regulatory environment for the research and development of cell and gene therapies, including fostering accelerated pathways to ensure that patients are able to access safe and effective therapies in a timely manner. 
4 Develop the necessary infrastructures within NICE and its counterparts in Scotland, Wales, and Northern Ireland to ensure health technology assessments are able to address the long-term value provided by cell and gene therapies. 
5 Collaborate with the NHS and other public and private payers in the UK to develop innovative financing models to ensure patients can access approved therapies in an efficient manner.
Meanwhile, as an illustration of litigation in the cryonics sector (more faith than science), Kurt Pilgeram in Montana is reportedly seeking $1m from the Alcor Life Extension Foundation for allegedly improperly removing his father's head, cremating the body and sending the ashes to Pilgeram's family members. The son also alleges that Alcor refused to return his father's head - currently in a vat of liquid nitrogen - so that he can cremate it.

One media item features the “They chopped his head off, burned his body, put it in a box and sent it to my house” subhead. Pilgeram Sr, a biochemist, was an enthusiast for cryonics. He is reported to have signed an agreement for whole-body preservation, in contrast to neurocryopreservation (where just a severed head is in cold storage pending purported eventual 'reanimation'). Alcor apparently indicated that it could not guarantee that it would be practical to fulfil all parts of the agreement; ultimately the head was removed and shipped off to the Alcor repository in Arizona when Pigeram died unexpectedly in 2015.

Alcor initially sued Kurt Pilgeram in 2017 after he allegedly attempted to stop his father’s life insurer from paying Alcor, which often depends on such payments. The insurance company had previously asked the courts to force litigation between the parties to settle the dispute. Alcor charges U$200,000 to preserve an entire body (supposedly in perpetuity), with its fee for neurocryopreservation being US$80,000.

The item states that Jim Pilgeram, a brother of the litigant, said “He believed in cryonics, but he didn’t believe in mutilation. He made it awful plain to them people that he did not want to be just a head".

Pilgeram reportedly alleges that Alcor promised that his father's body would be preserved and that the company "arbitrarily, fraudulently, and in bad faith" severed the elder Pilgeram's head and then cremated the body rather than deliver the remains to the family whole. Further, "inconclusive" tests have suggested the cremated remains may not be entirely his father's.

Pilgeram alleges elder abuse, infliction of emotional distress, breach of contract, unfair business practices, and intentional misrepresentation on the part of Alcor. Alcor argues that it was possible to reach Alcor during the weekend at the time of Pilgeram’s death but it wasn't alerted to Pilgeram’s death quickly enough to preserve the whole body. Court filings reportedly argue that "the fault of Pilgeram or others besides Alcor" caused the alleged damages, with Pilgeram failing "to use reasonable diligence" to mitigate the alleged damages

15 August 2018

Organ Markets

'Still A Vexed Question: Postmortem Gamete Removal And Use', a forthcoming HLB article by Wendy Bonython and myself, considers questions about property and the parens patriae jurisdiction in Re Cresswell [2018] QSC 14 and Chapman v South Eastern Sydney Local Health District [2018] NSWSC 1231.

A different perspective is provided in 'Private parts: an interrogation of private property rights in cadaveric organs' by Christopher Smol in (2017) 4 Public Interest Law Journal of New Zealand 150, with Smol commenting
This paper makes a tentative case for a futures sales model for cadaveric donor organs, wherein individuals can contract out the right to harvest their organs for transplant following their death, in exchange for compensation. The law of the United Kingdom, New Zealand, Australia and the United States are generally adverse to the notion of property rights in human bodily materials, and this article criticises this paradigm as serving to disenfranchise materials’ originators. New Zealand’s framework for cadaveric donation under the Human Tissue Act 2008 does not fully address practical barriers to successful donations. This article advocates a tightly-regulated government-run futures scheme as having potential to overcome some of these barriers, while mitigating serious ethical concerns. Non-instrumental concerns around commerce in the human body can be reconciled with the proposed model.
Smol argues
Almost all jurisdictions agree that human organs should not be able to be bought and sold. Similarly, most agree that an increase in the supply of organs available for potentially life-saving transplantations is desirable. However, the former position, as reified in the legal principle that there is no property in the body, has impeded the latter objective. While organ transplantation training and technology in developed nations has grown affordable and accessible, the supply of donated organs for these operations remain vastly lower than demand. 
One explanation for this organ shortage is that attitudes to the body, living and dead, have not kept pace with technology. Most organs are procured for transplantation by altruistic donation. This article focusses specifically on cadaveric donation by the recently deceased or brain-dead, which can be done for various organs with high rates of success. The no property in the body principle forbids sales, thus limiting the supply of transplant organs to those donated (that is, without compensation). Unfortunately, this practice facilitates fewer transplantations than are needed to save the lives of all who suffer organ failure. In 2011, 477 New Zealanders began to receive renal replacement therapy, while replacement kidney transplants totalled only 118; patient deaths totalled 412; of these, 44 had undergone transplant surgeries, but the vast majority (368) died while on dialysis (an expensive and non-curative alternative), presumably waiting for a transplant. 
This article will analyse this organ shortage problem from a consequentialist perspective. The restriction of property rights over cadaveric organs under the current legal paradigm fails to efficiently incentivise and safeguard the retrieval of those organs for lifesaving procedures. Part II overviews domestic and international law regarding property rights in cadavers and organs. Part III provides an economic analysis of cadaveric procurement, and recommends a heavily regulated property right in cadaveric organs, exercisable through futures contracts for cadaveric procurement. Part IV assesses non- consequentialist opposition to property rights revolving around Kantian dignity and the commodification of the human body. Ultimately, a detailed and highly regulated monopsonistic system allowing the sale and purchase of futures contracts for the right individuals’ organs in the event of their death would efficiently increase organ procurement. With careful implementation it could save lives while negotiating and accommodating legitimate normative concerns.
'“Death is a disease”: Cryopreservation, neoliberalism, and temporal commodification in the U.S.' by Taylor R. Genovese in (2018) 54  Technology in Society 52-56 comments
In Darren Aronofsky's 2006 film The Fountain, the protagonist, Tommy—played by Hugh Jackman—proclaims to a laboratory colleague after his wife dies from brain cancer, “Death is a disease. It's like any other. And there's a cure… and I will find it.” While this re-framing of death as a medical diagnosis to overcome and in need of a “cure” may seem facetious—or perhaps, to some, horrifying—humankind's array of religions have spent at least a section of their scriptures trying to explain away death's finality. Until quite recently in human history, death has been less articulated to materialistic notions of the physical but instead has been coupled with discussions about the spiritual. 
Somewhat situated at the crossroads of the physical and the spiritual is the transhumanist movement. The transhumanists are a meliorist movement that hope to enhance human intellect and physiology by applying scientific and technological advances to “enhance” individual human bodies. The movement can be traced back to Nikolai Fedorovich Fedorov's “cosmist” movement at the turn of the 20th century whose goals consisted of: establishing universal immortality for human beings, resurrecting the dead, engineering the human body for spaceflight, and freedom of movement throughout the cosmos. One modern enactment of the transhumanist philosophy is that of cryopreservation, or freezing one's body after death with the hope of being reanimated in the future. 
In this article, I will be focusing specifically on cryopreservation and two of the American biotechnomedical tenets introduced by Robbie Davis-Floyd and Gloria St. John  in their technocratic model of medicine: the “body as machine” and “death as defeat.” These axioms are embraced by both the biotechnomedical establishment as well as the cryopreservation communities when they discuss the future of humankind. In particular, I will be focusing on the political economy of cryopreservation as an embodiment of American neoliberalism—as well as a Durkheimian death ritual—in the twenty-first century. Finally, I will theorize on a future populated by human beings from “the past” and the implications and consequences that may be caused by contemporary humans experiencing a temporal shift from traveling in deep time vis-à-vis cryopreservation

18 November 2016

Cadavers and Cryonics

In JS (Disposal of Body), Re [2016] EWHC 2859 (Fam) Jackson J in the UK High Court of Justice has considered an application regarding cryonics.

The judgment states
2.This urgent application comes before the court in sad circumstances and has been considered at hearings on 26 September, 4 October and 6 October.
3.The applicant is a 14-year-old girl, known in these proceedings as JS. Last year, she was diagnosed with a rare form of cancer and now she is a hospital inpatient. Unfortunately, active treatment came to an end in August. JS is now receiving palliative care and she knows that she will soon die. Her case has come before the court because of the novel issues it raises and, particularly, because JS's parents are not in agreement about what is to happen after her death.
4.A reporting restriction order applies in this case. It prevents any reporting until one month after JS dies. After that, it prevents the identification of JS or her family or the hospital trust and its staff on an indefinite basis. Its terms are set out in the Appendix at the end of the judgment.
5.JS's parents are divorced. For most of her life she has lived with her mother in the London area, and she has had no face-to-face contact with her father since 2008. For reasons that I need not describe, the relationship between the parents is very bad. Late last year, the father, who himself has cancer, became aware of JS's condition. He brought proceedings to be allowed to see her, but in December 2015 these ended with an order that he should have written contact only. The local authority was granted a Family Assistance Order in order to manage the indirect contact, and so JS has a social worker. JS has herself refused any contact with her father and does not want him to have detailed knowledge of her medical condition.
6.Over recent months, JS has used the internet to investigate cryonics: the freezing of a dead body in the hope that resuscitation and a cure may be possible in the distant future.
7.The scientific theory underlying cryonics is speculative and controversial, and there is considerable debate about its ethical implications. On the other hand, cryopreservation, the preservation of cells and tissues by freezing, is now a well-known process in certain branches of medicine, for example the preservation of sperm and embryos as part of fertility treatment. Cryonics is cryopreservation taken to its extreme.
8.Since the first cryonic preservation in the 1960s, the process has been performed on very few individuals, numbering in the low hundreds. There are apparently two commercial organisations in the United States and one in Russia. The costs are high, or very high, depending on the level of research into the subject's case that is promised. The most basic arrangement (which has been chosen here) simply involves the freezing of the body in perpetuity. Even that will cost in the region of £37,000, according to the evidence in this case – about ten times as much as an average funeral. Although JS's family is not well-off, her maternal grandparents have raised the necessary funds.
9.There is no doubt that JS has the capacity to bring this application. She is described by her experienced solicitor as a bright, intelligent young person who is able to articulate strongly held views on her current situation. Her social worker says that she has pursued her investigations with determination, even though a number of people have tried to dissuade her, and that she has not been coerced or steered by her family or anyone else.
10.JS has written this: "I have been asked to explain why I want this unusual thing done. I'm only 14 years old and I don't want to die, but I know I am going to. I think being cryo-preserved gives me a chance to be cured and woken up, even in hundreds of years' time. I don't want to be buried underground. I want to live and live longer and I think that in the future they might find a cure for my cancer and wake me up. I want to have this chance. This is my wish."
11.Her mother supports JS in her wishes. Her father takes a different position, as I shall explain below.
12.Cryonic preservation, whether or not it is scientifically valid, requires complex arrangements involving the participation of third parties. The body must be prepared within a very short time of death, ideally within minutes and at most within a few hours. Arrangements then have to be made for it to be transported by a registered funeral director to the premises in the United States where it is to be stored. These bridging arrangements are offered in the UK for payment by a voluntary non-profit organisation of cryonics enthusiasts, who are not medically trained. Evidently, where the subject dies in hospital, the cooperation of the hospital is necessary if the body is to be prepared by the volunteers. This situation gives rise to serious legal and ethical issues for the hospital trust, which has to act within the law and has duties to its other patients and to its staff.
13.The Trust, speaking through its solicitor Ms Helden, has given outstanding assistance to the court. On 5 October, at my request, a meeting took place between a representative of the voluntary organisation and the doctors, nurses and other representatives of the hospital trust. I have read a note of the meeting, which reviews all the practical aspects of the plan and shows the careful thought that the Trust has given to the matter at a senior level. The outcome is that the hospital is willing to do what it properly can to cooperate for the sake of JS, because the prospect of her wishes being followed will reduce her agitation and distress about her impending death. The decision centres entirely on what is best for JS. The Trust is not endorsing cryonics: on the contrary, all the professionals feel deep unease about it.
14.It is understood by all that the process can only go ahead if the volunteers have 24-48 hours' advance notice of the likely time of death to allow them to arrive at the hospital. If death occurs without warning, the process cannot take place.
15.The Trust has also drawn attention to the terms of the Human Tissue Act 2004 and has liaised with the Human Tissue Authority ('the HTA'). Advice received from the HTA, for which I am again grateful, confirms that what is proposed in this case is not regulated by the statute and that accordingly the HTA currently has no remit. It is thought that the present situation was not contemplated when the legislation was passed. The HTA would be likely to make representations that activities of the present kind should be brought within the regulatory framework if they showed signs of increasing. It also raises questions about the standing of the voluntary organisation and draws attention to possible public health concerns and the position of the coroner.
16.I have also been taken to the old authorities on the unlawful treatment of dead bodies (see Archbold 2017 at 31.54 onwards) but it does not appear that an offence would be committed in this case; in other words, what JS wants does not seem to be illegal.
17.Enquiries have now been made of the United States authorities, who have confirmed that there is no prohibition on human remains being shipped to the US for cryonic preservation provided that the UK funeral director and the US commercial organisation are in communication to guarantee that local, state and federal requirements are complied with.
18.No objection is raised by JS's social worker or her GP, who has provided information about the manner in which death is likely to be certified.
19.The funeral directors are willing to attend at the hospital to ensure that the transportation of JS's body is appropriately supervised.
20.So, despite all the difficulties, there is no inevitable practical obstacle to JS's body being transported to the United States for cryonic preservation.
21.The father's position has understandably fluctuated. No other parent has ever been put in his position. It is not to be forgotten that he himself is facing serious illness, and is not able to discuss the matter with JS or her mother because of the extreme difficulties within the family. At the start of the proceedings, he was opposed. He was concerned that he might become responsible for the costs. He also wrote: "Even if the treatment is successful and [JS] is brought back to life in let's say 200 years, she may not find any relative and she might not remember things and she may be left in a desperate situation given that she is only 14 years old and will be in the United States of America." Despite this, during the course of the first hearing, the father, who was then unrepresented, changed his position, saying: "I respect the decisions she is making. This is the last and only thing she has asked from me. I would like to have written confirmation that I will not have to pay the costs as I have cancer and I live on benefits." However, by the second hearing, the father was legally represented and his position had changed again. He said that he was prepared to agree to what JS wanted on four conditions: that he and other members of his family could view her body after death; that the mother would not pursue any financial claims against him; that the mother and her family would not make any contact with him and his family; and that he would not be pursued for any contribution to the costs of the cryonic process. The father's last statement at this hearing was that he wants the court to know that he respects JS, and that he will respect the court's decision.
22.The father's first condition is objectionable to JS.
23.It is no surprise that this application is the only one of its kind to have come before the courts in this country, and probably anywhere else. It is an example of the new questions that science poses to the law, perhaps most of all to family law. Faced with such a tragic combination of childhood illness and family conflict, the court must remember that hard cases make bad law, and that natural sympathy does not alter the need for the application to be decided in accordance with established principle, or with principle correctly established.
Jackson J goes on to comment
25.The first thing to note is that much of the current problem arises from the fact that JS is a child, albeit a legally competent one. If she was 18, she would be able to make a will, appointing her mother as her executor, and it would then be for the mother to make arrangements for the disposal of JS's body, no doubt in accordance with her wishes. However, children cannot make wills. My approach is therefore to try to remove the disadvantage that JS is under as result of her age. I do not intend to go further than that, as JS cannot be in a better legal position than she would be if she was an adult. 26.Next, it is important to approach a problem of this kind on the basis of a real situation as opposed to theoretical possibilities. When the application first came before the court, it was not clear that JS's wishes could be carried out, because there was no information from the hospital or from the US authorities. Now that this and other information has been gathered, there is a practical plan that can be considered.
27.Thirdly, the court is not making orders against third parties. The position of the various organisations and authorities has been set out above. All the court is doing is to provide a means of resolving the dispute between the parents. 28.Fourthly, this case does not set a precedent for other cases. If another health trust was ever to be faced with a similar situation, it would be entitled to make its own judgment about what was acceptable in respect of a patient in its care, and it might very well reach a different conclusion, as might another court. There are clearly a number of serious ethical issues, and I have received information about procedures performed on the body after death that would be disturbing to many people.
29.Fifthly, I am acutely aware that this case gives rise to a large number of issues that cannot be investigated in the course of a hearing of this kind. If regulation is required, there would need to be consultation with a wide range of interested parties. That is a matter for others. This court is faced with a situation that needs immediate determination on the basis of the best available information. For the future, I shall direct that the papers in this case shall be released to the HTA on the basis that the identity of the family and the hospital trust will remain confidential.
30.Lastly, I cannot emphasise enough what this case is not about. It is not about whether cryonic preservation has any scientific basis or whether it is right or wrong. The court is not approving or encouraging cryonics, still less ordering that JS's body should be cryonically preserved.
31.Nor is this case about whether JS's wishes are sensible or not. We are all entitled to our feelings and beliefs about our own life and death, and none of us has the right to tell anyone else – least of all a young person in JS's position – what they must think.
32.All this case is about is providing a means by which the uncertainty about what can happen during JS's lifetime and after her death can be resolved so far as possible. JS cannot expect automatic acceptance of her wishes, but she is entitled to know whether or not they can be acted upon by those who will be responsible for her estate after her death. It would be unacceptable in principle for the law to withhold its answer until after she had died. Also, as a matter of practicality, argument about the preservation issue cannot be delayed until after death as the process has to be started immediately if it is to happen at all.
33.Having considered all the arguments, my conclusion is that the court can and should do what it can to provide a means of resolving the dispute between JS's parents that hangs over the arrangements that are to be made after her death.
34.Mr Tyler QC has presented arguments for and against the proposition that the court has a power that can be exercised now.
35.Against the existence of the power is the fact that a person cannot control the disposition of their body after death (Williams v Williams, see below); that there may be a later change of circumstances that would undermine the decision; and that as a matter of policy the court may not wish to encourage similar applications.
36.In favour of the existence of the power is that all parties are now represented before the court, whilst it will be difficult if not impossible to reassemble effectively after JS's death; that the resolution of the issue now should prevent undignified scenes later; that clarity will help third parties to know how they should act; that the arrangements for JS after death will be particularly complex if she is to be preserved; that JS does not want to be seen after death by her father or his family and the possibility that this might happen causes her present distress; and that consideration of JS's welfare during life, with her dependence on her mother who is herself under considerable stress, favours the ability to provide a resolution at the earliest opportunity.
37.I am satisfied that the court has power to make the order requested by JS for the positive reasons just listed. In relation to the other considerations, a decision entrusting powers to the mother does not contravene the principle in Williams. The court is not deciding or approving what should happen, but is selecting the person best placed to make those decisions after JS's death. As to change of circumstances, this is a very deep and long-standing family breakdown and there is in my view no chance of a change in the time between now and JS's death. I acknowledge that this decision might conceivably encourage a small number of other pre-death applications, but if these were wrongly brought they could be dealt with accordingly. The policy concern cannot lead the court to decline to deal with a situation that demands resolution, and in fact the issue of viewing the body has only arisen here as a result of the condition imposed by the father in response to JS's application.
38.Turning to the merits: as to cryonic preservation, I fully understand the father's misgivings. However, his role in JS's life has been extremely limited in recent years. His new request to see JS after her death can only cause her distress in life. His other conditions, some of which have nothing to do with JS, carry no real weight. As to responsibility for payment for cryonic preservation, there is no way in which he could possibly be held liable.
39.As to viewing JS's body, Miss Khan argues on the father's behalf that the court cannot and should not make any decision that prevents him and his family making an application to see JS's body after death.
40.A dispute about a parent being able to see his child after death would be momentous enough on its own if the case did not also raise the issue of cryonic preservation. An order placing the arrangements after JS's death in the hands of her mother will inevitably exclude the father, including by depriving him of the ability to view the body. That is a serious conclusion, but it is justified on the exceptional facts. The intensity of the difficulties between JS and her mother on the one hand and the father and his family on the other makes it impossible to accommodate the father's wishes. The decision would be the same after JS's death and in the meantime the whole family and those helping them would be deprived of the benefits of clarity.
41.Therefore, both as to preservation of the body and as to the question of who should be permitted to view it, I conclude that the mother is best placed to manage this unusual and difficult situation. I will therefore make orders placing responsibility in her hands and prevent the father from intervening. These orders will consist of:
(1) A specific issue order permitting the mother to continue to make arrangements during JS's lifetime for the preservation of her body after death.
(2) An injunction in personam preventing the father from (i) Applying for a grant of administration in respect of JS's estate. (ii) Making or attempting to make arrangements for the disposal of JS's body. (iii) Interfering with arrangements made by the mother with respect to the disposal of JS's body.
(3) A prospective order under s.116 of the Senior Courts Act 1981, alternatively under the inherent jurisdiction of the High Court, to take effect upon JS's death, appointing the mother as the sole administrator of her estate in place of the mother and father jointly, and specifying that the mother shall thereby have the right to make arrangements for the disposal of the body, and to decide who should be permitted to view it.
(4) An order for disclosure of the papers to the Human Tissue Authority.
42.I will not make a prohibited steps order over and above the injunctions. The father has given an assurance that he will not try to see JS during her lifetime against her will and such an order is not in my view necessary. The real issue here relates to the dispute that would arise after death. ...
44.I turn in more detail to the legal issues.
Specific issue order
45.The making of a specific issue order raises no special difficulty. By s.8 Children Act 1989 a specific issue order is "an order giving directions for the purpose of determining a specific question which has arisen, or which may arise, in connection with any aspect of parental responsibility for a child." The Act applies to parental responsibility for a child, defined as a person under the age of 18. It does not extend to regulating events arising after the child's death. See, for example, R v Gwynedd County Council, ex p. B [1992] 3 All ER 317, a decision under the Child Care Act 1980; also Fessi v Whitmore [1999] 1 FLR 767.
46.The making of a specific issue order is governed by the welfare principle. In this case the predominant features are JS's wishes and feelings and her acute emotional needs. These are best met by an order granting the mother the right to make arrangements during JS's lifetime for the preservation of her body after death. In making this order, the court is not approving the choice of arrangements, but it is giving JS and her mother the opportunity to make that choice.
Disposition of a body
47.The law in relation to the disposition of a dead body emanates from the decision of Kay J in Williams v Williams [1882] LR 20 ChD 659, which establishes that a dead body is not property and therefore cannot be disposed of by will. The administrator or executor of the estate has the right to possession of (but no property in) the body and the duty to arrange for its proper disposal. The concept of 'proper disposal' is not defined, but it is to be noted that customs change over time. It was not until the end of the 19th century that cremation was recognised as lawful in the United Kingdom, and it was in due course regulated by the Cremation Act 1902. Nowadays cremation is chosen in about 3 out of 4 cases in this country.
48.Thus, in English law, there is no right to dictate the treatment of one's body after death. This is so regardless of testamentary capacity or religion. The wishes of the deceased are relevant, perhaps highly so, but are not determinative and cannot bind third parties. For discussion of the impact of the European Convention on Human Rights on the common law in this respect, see Burrows v HM Coroner for Preston [2008] EWHC 1387 (QB) and Ibuna v Arroyo [2012] EWHC 428 (Ch).
49.The role of the court is not to give directions for the disposal of the body but to resolve disagreement about who may make the arrangements: see, for example, Anstey v Mundle [2016] EWHC 1073 (Ch).
50.A person under the age of 18 cannot make a valid will: Wills Act 1837 s.7. In this case, JS's parents will each be entitled to a grant of administration over her estate (Non-Contentious Probate Rules 1987 Rule 22(1)(c)) and, absent outside intervention, are therefore equally under a duty to arrange for the disposal of her body.
51.Disputes between executors or administrators about the disposition of a body have been dealt with either in the manner of the resolution of a dispute between trustees (see Fessi and Hartshorne v Gardner [2008] EWHC B3 (Ch)) or as an application to displace the administrator of an estate, pursuant to s.116 of the Supreme Court Act 1981 (see Burrows and Ibuna).
The Court notes
67.On 8 November, I received a detailed note from the solicitors for the hospital trust in which the events surrounding JS's death are described from the point of view of the hospital. It records that JS died peacefully in the knowledge that her body would be preserved in the way she wished.
68.However, the note makes unhappy reading in other ways. The Trust expresses very real misgivings about what occurred on the day of JS's death. In brief and understated summary:
(1) On JS's last day, her mother is said to have been preoccupied with the post-mortem arrangements at the expense of being fully available to JS.
(2) The voluntary organisation is said to have been under-equipped and disorganised, resulting in pressure being placed on the hospital to allow procedures that had not been agreed. Although the preparation of JS's body for cryogenic preservation was completed, the way in which the process was handled caused real concern to the medical and mortuary staff.
The controversy is discussed in 'Cryonics in the Courtroom: Which Interests? Whose Interests?' by Richard Huxtable in (2018) 26(3) Medical Law Review 476–499, 'Re JS (A Child)(Disposal of Body: Prospective Orders) [2016] EWHC 2859 (Fam): High Court of Justice (Family Division)' by Alex Benn in (2017) 6(2) Oxford Journal of Law and Religion 413-415 and 'Frozen Corpses and Feuding Parents: Re JS (Disposal of Body)' by Heather Conway in (2018) 81(1) The Modern Law Review 132-141.