1.1 Introduction

We are all made up of DNA (deoxyribonucleic acid). We all have our own unique genetic code. When any one of us gives up a physical sample for the purpose of a genetic test, that code becomes decipherable. Through genetic testing, information that is contained in our bodies is encapsulated in digital form. This genetic data has the potential to be stored indefinitely and it can serve not only as a unique identifier for you, but also to identify family members. The shared nature of genetic data also means that data collected for one purpose can be used for a variety of secondary purposes, including criminal investigations and tracing family members.

Our DNA is part of each of us as individuals and we might assume that we own it in the same way that many of us might assume we own our bodies. Yet in many places the law does not actually provide for property rights in samples of DNA, once they are extracted from us or in our own bodies. While we might often feel that we in some sense own our bodies and their parts, this is not the case for the most part at present. For example, in the United States of America, tissue samples such as skin and saliva that we leave behind us are often treated as abandoned and can be used by law enforcement in criminal investigations. This has been exemplified by the recent involvement of the geneology database GEDmatch in the investigation of the Golden State Killer case, which will be discussed in Chapter 4.

IN the winter of 188-, I was afflicted by a series of nervous ailments, brought on by over-work and over-worry. Chief among these was a protracted and terrible insomnia, accompanied by the utmost depression of spirits and anxiety of mind. I became filled with the gloomiest anticipations of evil; and my system was strung up by slow degrees to such a high tension of physical and mental excitement, that the quietest and most soothing of friendly voices had no other effect upon me than to jar and irritate. Work was impossible; music, my one passion, intolerable; books became wearisome to my sight; and even a short walk in the open air brought with it such lassitude and exhaustion, that I soon grew to dislike the very thought of moving out of doors. In such a condition of health, medical aid became necessary; and a skilful and amiable physician, Dr. R – , of great repute in nervous ailments, attended me for many weeks, with but slight success. He was not to blame, poor man, for his failure to effect a cure. He had only one way of treatment, and he applied it to all his patients with more or less happy results. Some died, some recovered; it was a lottery on which my medical friend staked his reputation, and won. The patients who died were never heard of more – those who recovered sang the praises of their physician everywhere, and sent him gifts of silver plate and hampers of wine, to testify their gratitude.

Having established the definitional confusion in both Saunders's and subsequent uses of ‘total pain’, in this chapter I explore criticisms of Saunders's term. While happy that ‘total pain’ implies the complexities of pain and personhood, many authors seem less comfortable with the theoretical ramifications of Saunders's ambiguous choice of words, supposing them to be inappropriate or impossible to measure. Although valid, I argue these criticisms often understand ‘total pain’ as a well-theorised concept coming up against the practical parameters of modern professionalised healthcare settings when it might more accurately be described as a term or phrase that makes up in practical use for what it apparently lacks in analytic rigour.

‘TOTAL’ + ‘ PAIN’ = ??

Issues with the Use of ‘Total’

Even David Clark, often a valedictorian for Saunders, acknowledges the possibility of a Foucauldian reading of ‘total pain’, claiming it functions as a nomenclature of both ‘facilitation’ and ‘inscription’ (1999b, p. 727). Despite Saunders's best intentions, the holism of ‘total pain’ might end up extending rather than replacing the disciplinary power of the clinical gaze, seemingly aspiring to open up a patient's entire being, including subjectivity and personality, to medical interpretation and treatment. As Krawczyk argues (2018, p. 161), ‘total pain’ can be of therapeutic value to the patient by making difficult and complex emotional distress expressible and therefore legible but it also channels their experience along culturally normative lines of how to die well. ‘Total pain’ therefore encourages professionals to seek out instances of pain in a manner which, together with routinised pain relief and Saunders's initial preference for dying people to be institutionalised, can be construed as compassionate medical care – or as a means of controlling and sanitising the dying process to achieve a socially acceptable ‘good’ death.

Paul lived in the ancient world. New Testament research consistently shows how ancient philosophical language, vocabulary and notions permeate his letters. In these letters, one may, for instance, rediscover the cosmology of Stoicism but also an anthropology strongly inspired by Plato. When realising this, one begins to understand why Paul's letters are not only missionary texts or occasional epistles addressing questions relevant to the communities with which the apostle corresponded. They also contain a specific philosophical potential and evoke particular philosophical questions, allowing for the discovery of some¬thing universal in them, beyond the confines of the specific situation in which, and occasion for which, they were originally written.

At the end of the previous chapter, I briefly discussed the Stoic back¬ground of Paul's use of the terms pneuma and cosmos. In 1 Cor. 15, there is an even stronger presence of the Stoic vocabulary and cosmol¬ogy, as Engberg-Pedersen has argued. The presence of this cosmology is philosophically interesting because it seems to imply that Paul, just like the Stoics, opts for a cosmological monism. At the same time, this monism seems difficult to reconcile with his distinction between a spirit of the world and a spirit of God, as found in 1 Cor. 2:12.

Interestingly, such a tension with Stoic ideas can also be traced in 1 Cor. 15. In the rhetoric of this chapter, Paul draws a distinction several times between what is rendered as natural or sensuous – the Greek terms are psuchē and psuchikon, which refer to the principle of animal life – and the spiritual – pneuma and pneumatikon.

This chapter extends my examination of Saunders's repeated assertion that words are rarely needed in end-of-life care. Starting from Saunders's interest in the power of her patients’ passivity, I argue ‘total pain’ incorporates how the dying body's vulnerability establishes new forms of relationality and temporality so that personhood lies increasingly in relations with others and experiences frequently feel timeless. Modes of caring presence expressed through non-narrative acts like touch, watching and ‘being with’, which Saunders implies assist with ‘total pain’, can be understood as ways of holding or making space for the complexities of such experience, while accepting potential shortfalls in communication or understanding. Saunders is therefore not only an early advocate for forms of narrative medicine but also of non-instrumental acts that challenge positivist medical interventions by seeming to do nothing but nevertheless affirming value through bearing witness.

EXPANDING CONCEPTIONS OF PERSONHOOD

The Beyond in Our Midst

I ended the last chapter by demonstrating how Saunders might be watching her patients to observe a moment of all-encompassing truthfulness as they pass from the living to the dead. During a 1974 lecture given in Guildford Cathedral, Saunders says something similar about the accounts of faith offered by St Christopher's patients during a television broadcast, claiming that they allowed ‘the Infinite God to shine through a finite person, through what was becoming an increasingly fragile existence’ (1974c, p. 1). Saunders's understanding of her dying patients almost as religious icons, and so conduits for the spiritual experience of others, might seem like abandonment of the patient and abuse of her clinical position.

3.1 Introduction

As discussed in Chapter 1, this chapter draws upon research originally conducted between 2011 and 2016 and which involved the compilation of a list of companies offering DNA testing services online. This included data regarding companies, including their location and the type of test offered as well as screen shots, wrap contracts and privacy policies, where these were available. All companies identified were tabulated with one master table and then tables of the various sub-categories were created, with each company being assigned to a particular category. The categories were: health (subdivisions of pharmacogenetic; predisposition; pre-symptomatic; nutrigenetic; carrier testing; and testing available through physicians); ancestry; paternity; surreptitious (‘infidelity’); DNA match making; child talent; and athletic ability.1 In 2018, several versions of the master table were released via Zenodo2 and further updates will be released over the coming years. Version 1.3 lists 287 companies that offer some form of DNA testing online, but at October 2018, 289 companies are on file.

It is important to recognise that as most companies only perform tests on a portion of an individual's genome, their utility for individual consumers is inherently limited. This idea has been highlighted again in an op-ed piece by Sarah C. Hopkins for the Los Angeles Times.3 Sarah is training to be a genetic counsellor and the article is based on her experience purchasing a DTC test. As she has previously undergone genetic testing and genetic counselling in a clinical setting, having been diagnosed with bilateral breast cancer she was particularly interested in 23andMe's BRCA testing.

Fragments and Silence

WITHIN a very short time I became a temporary resident in the house of Heliobas, and felt myself to be perfectly at home there. I had explained to Madame Denise the cause of my leaving her comfortable Pension, and she had fully approved of my being under a physician's personal care in order to ensure rapid recovery; but when she heard the name of that physician which I gave (in accordance with Zara's instructions) as Dr. Casimir, she held up her fat hands in dismay.

“Oh, mademoiselle,” she exclaimed, “have you not dread of that terrible man? Is it not he that is reported to be a cruel mesmerist who sacrifices everybody – yes, even his own sister, to his medical experiments? Ah, mon Dieu! it makes me to shudder!”

And she shuddered directly, as a proof of her veracity. I was amused. I saw in her the example of the common multitude, who are more ready to believe in vulgar spirit-rapping and mesmerism than to accept an established scientific fact.

“Do you know Dr. Casimir and his sister?” I asked her.

“I have seen them, mademoiselle; perhaps once – twice – three times! It is true madame is lovely as an angel; but they say” – here she lowered her voice mysteriously – “that she is wedded to a devil! It is true, mademoiselle – all people say so. And Suzanne Michot – a very respectable young person, mademoiselle, from Auteuil – she was employed at one time as under-housemaid at Dr. Casimir’s, and she had things to say – ah, to make the blood like ice!”

Today's world is one of constant tracking, where personal data fuels many new products and services. Numerous emerging and new technologies offer novel opportunities for us to learn about ourselves and allow companies to learn about us as well. The Internet of Things is rapidly expanding the range of entities that can profile us and analyse us. Smartphones and travel cards track our movements across cities and across countries. Wearable fitness monitors track our exercise and can also reveal our location. New consumer services such as DTC promise to give us insights into our identities, our essence – but at what cost?

This book has sought to provide an introduction to the DTC industry and the challenges it poses for regulation. This chapter will discuss possible future directions for improved industry governance. Several suggestions are made, as given the nature of DTC services and the variety of areas of law which might be drawn upon to regulate the industry, there are both shortterm fixes and longer-term solutions to be considered. While the law often struggles to keep up with technology, with the wide range of new technologies coming to market which have the potential to change the way we live and affect our lives in significant ways, regulators, legislators, lawyers, researchers, technology companies and the public need to come together and engage in open discussion so that laws can be created that can respond to the specific issues raised by particular technologies and regulate them appropriately.

The form of the long poem has been of fundamental importance to Literary Studies from the time of Homer onwards. The Reading Guides to Long Poems Series seek to celebrate and explore this form in all its diversity across a range of authors and periods. Major poetic works – The Odyssey, The Faerie Queene, Paradise Lost, The Prelude, In Memoriam, The Waste Land – emerge as defi ning expressions of the culture which produced them. One of the main aims of the series is to make contemporary readers aware of the importance of the long poem for our literary and national heritage.

How ‘long’ is a long poem? In ‘The Philosophy of Composition’ Edgar Allan Poe asserted that there is ‘a distinct limit, as regards length, to all works of literary art – the limit of a single sitting’. Defi ned against this, a long poem must be one which exceeds the limit of a single sitting, requiring sustained attention over a considerable period of time for its full appreciation. However, the concept of poetic length is not simply concerned with the number of lines in a poem, or the time it takes to read it. In ‘From Poe to Valéry’ T. S. Eliot defends poetic length on the grounds that ‘it is only in a poem of some length that a variety of moods can be expressed … These parts can form a whole more than the sum of the parts; a whole such that the pleasure we derive from the reading of any part is enhanced by our grasp of the whole.’ Along with Eliot, the Series Editors believe that poetic length creates a unique space for a varied play of meaning and tone, action and refl ection, that results in particular kinds of reading and interpretation not possible for shorter works.

In 2014 Pedro Costa's two-screen video installation Filhas do Fogo (Daughters of Fire, 2013) was exhibited at the São Roque Church in Lisbon. This work depicted static shots of the faces of Cape Verdean women against a barren Cape Verde backdrop, images which were originally included in Casa de Lava. Costa's video installation was one of the artefacts of the exhibition Visitação: O Arquivo Como Memória e Promessa, held by the Museum of São Roque. The museum is located adjacent to the São Roque Church and to the headquarters of its presiding institution, the Portuguese charity organisation Santa Casa da Misericórdia. The main exhibition was accessed through the church, which explains the sui generis location of Costa's video installation. Included in the exhibition yet placed outside the white-walled space housing the other works displayed, Daughters of Fire came to share its attention with the rich religious sculpture and liturgical objects permanently displayed in the church's interior setting (Figures 5.1 and 5.2).

The inclusion of a work by Pedro Costa in this site is an example, albeit sui generis, of the increasing interest by art galleries and museums in integrating cinema into their cultural remits. The practices of many contemporary artists have responded to such interest, expressed in the current merging between art and cinema's aesthetics and modes of production. Similarly, the last two decades have seen the expansion of the curatorial tenets of the art gallery to accommodate video installations created by filmmakers. Either sporadically or more persistently, video installations by filmmakers such as Apichatpong Weerasethakul, Abbas Kiarostami, Chantal Akerman, Atom Egoyan, Aleksandr Sokurov, Vítor Erice, Raúl Ruiz and Jean-Luc Godard (to name but a few) have been exhibited in such context.

Having set out the possible uses and abuses of narrative in relation to ‘total pain’, this chapter examines how integral narrative might be in communicating ‘total pain’ to others. Rather than using formal medical cases, Saunders established the need for hospice care through anecdotes like Mrs Hinson’s, emphasising patient voice and everyday details to highlight the personhood of dying patients. Saunders's reliance on anecdotes in print indicates her publications’ origins in her many public lectures but also the predominantly oral culture underpinning the kind of care she was advocating. However, Saunders later rubbished anecdotal evidence despite her own continued use of anecdotes to communicate the holism of ‘total pain’, suggesting aspects of ‘total pain’ resist being evidenced by either conventional data or long-form narrative case studies.

SAUNDERS's USE OF PATIENT NARRATIVES

The Case of Mrs Hinson

David Clark and Kim Devery, among others, claim Saunders utilised the power of narrative as medical evidence, building her publications around stories of individual patients, such as Mrs Hinson and her phrase ‘all of me is wrong’. For Clark, Saunders's published work establishes an emotional connection with others to muster support for hospice care (2006). Devery attributes this affective connection to Saunders's conscious use of ‘plot and emotion’ in her patient narratives to emphasise the personhood of each patient as ‘a feeling person’ and demonstrate how good end-of-life care requires staff, like Saunders herself, who are ‘both expert and human’ (2009, pp. 70–1).

At this point, we need to take a detour via the contemporary neurosciences and see what we can learn from their data. Obviously, Spinoza could have had no knowledge of this science. Yet we can turn to him for a discussion of the possible philosophical interpretations of these data, which raise some old questions now formulated in new terms. In particular, we discover that we are not conscious of the conscious activities of our brain – a fact that calls into question the value of our common-sense judgements regarding what constitutes our conscious activities in their relation to our everyday experiences. Freud had begun this critical work without the tools of contem¬porary biology. A Spinozist interpretation of neurobiological data leads to a world in which a rational explanation of phenomena compels us to abandon common sense, a little like how microphysics and astrophysics discover a material reality that differs from the experience we have of it in our everyday lives, and which therefore also contradicts our common sense.

To be sure, we cannot hope to cover the immense field of research on the various aspects of the classical problems concerning the nature of thought in relation to bodily matter, in particular to the brain, in the form these questions take in the contemporary cognitive sciences. I will discuss some of these works in relation to the question of psychophysical causation, the negation of which, in our foundational proposition Ethics III, 2, is one of the most original aspects of the Spinozist approach. I will try to show how this approach is also the most relevant.

‘For up till now I have not been able to set out anything concerning [these matters] in an orderly way’

Defining the simplest bodies is no easy task. In one of his final letters, writ¬ten six months before his death, Spinoza states that he has not ‘been able to set out anything concerning them in an orderly way’ (Ep. LXXXIII [to Tschirnhaus]).

It is not hard for us today to understand the source of this difficulty in the early stages of modern physics: these small bodies could not yet be expressed by mathematical formulas or equations, while energetics and thermodynamics – which would only begin to be developed in the nine¬teenth century – were absent.

But let us read Spinoza's reply to the question posed by his friend and disciple Walther von Tschirnhaus:

What is at stake here? Spinoza is concerned in this letter with the status of motion and rest as they relate to extension in the terms he conceives of it in opposition to Descartes.

This is the first book to compile a collection of essays on ‘slow cinema’, a term that has acquired remarkable visibility in film criticism over the last decade, thus arriving attached to particular cultural phenomena and inserted within specific public debates. Before delving into an analysis of the cinematic style with which the term has become associated, a brief survey of these phenomena and debates is immediately required.

Discourses

Though slowness may be identified as a constitutive temporal feature of previous films, schools and traditions, the notion has gained unprecedented critical valence in the last decade. One of the first to coin the expression ‘cinema of slowness’ was the French film critic Michel Ciment, in 2003, citing, as exemplary of this trend, directors such as Béla Tarr (Hungary), Tsai Ming-liang (Taiwan) and Abbas Kiarostami (Iran) (Ciment, 2003). In 2008, taking up Ciment's expression, Matthew Flanagan would expand its theoretical application in his influential article ‘Towards an Aesthetic of Slow in Contemporary Cinema’ which he described as based on ‘the employment of (often extremely) long takes, de-centred and understated modes of storytelling, and a pronounced emphasis on quietude and the everyday’ (2008). One could mention, for example, the unbroken shots in Tarr's films in which viewers simply follow characters walking aimlessly under torrential rain for more than five minutes; or the contemplative landscape imagery in the films of Carlos Reygadas (Mexico), Lisandro Alonso (Argentina) and Lav Diaz (Philippines). Or the quotidian, narratively insignificant chores recorded in minute detail and real time in the work of these and many other film-makers who have become associated with the trend.

IT was a very simple and quiet procession that moved next day from the Hôtel Mars to Père-la-Chaise. Zara's coffin was carried in an open hearse, and was covered with a pall of rich white velvet, on which lay a royal profusion of flowers – Ivan's wreath, and a magnificent cross of lilies sent by tender-hearted Mrs. Challoner, being most conspicuous among them. The only thing a little unusual about it was that the funeral car was drawn by two stately white horses; and Heliobas told me this had been ordered at Zara's special request, as she thought the solemn pacing through the streets of dismal black steeds had a depressing effect on the passer-by.

“And why,” she had said, “should anybody be sad, when I in reality am so thoroughly happy?”

Prince Ivan Petroffsky had left Paris, but his carriage, drawn by two prancing Russian steeds, followed the hearse at a respectful distance, as also the carriages of Dr. Morini, and some other private persons known to Heliobas. A few people attended it on foot, and these were chiefly from among the very poor, some of whom had benefited by Zara's charity or her brother's medical skill, and had heard of the calamity through rumour, or through the columns of the Figaro, where it was reported with graphic brevity. The weather was still misty, and the fiery sun seemed to shine through tears as Father Paul, with his assistants, read in solemn yet cheerful tones the service for the dead according to the Catholic ritual.