Science & Technology Studies 2/2013

Cyborg Heart: The Aff ective Apparatus of Bodily Production of ICD Patients

Pernille Bjørn and Randi Markussen

We argue that a approach both emphasizes the complexity in treating patients with implantable cardioverter defi brillators (ICDs) attached to home monitoring devices, and makes it possible to decipher modern perspectives in the notion of ‘Patient 2.0’ and other representations of patients. We attempt to open up the notion of Patient 2.0 exemplifi ed by ICD patients by drawing on the cyborg idea as developed by Donna Haraway as well as her understanding of science and the body as an apparatus of bodily production. We include the feminists Rosi Braidotti, Anne Balsamo, Geoff Bowker, and Leigh Star in discussing the cyborg, its infrastructures and aff ective potentials. We analyse modern imaginaries of remote monitoring as they are portrayed on the websites of the two largest manufacturers of ICD technologies, and based on an analysis of the apparatus of bodily production involved when patients visit a hospital to have their illness monitored we propose the analytical device cyborg heart to capture an aff ective apparatus of bodily production in the clinic and the idea of an enlarged sense of community as opposed to modern imaginaries of patient empowerment. Finally we discuss how the device cyborg heart diff ers from the notion logic of care.

Keywords: cyborg, patient, healthcare

Life is beyond pleasure and pain – it is Introduction a process of becoming, of stretching the boundaries of endurance. Th ere is noth- In 1982 Ridley Scott released his fi lm Blade ing self-evident or automatic about life. Runner, based on Philip K. Dick’s book Do It is not a habit, though it can become Androids Dream of Electric Sheep? (Dick, an addiction. One has to ‘jump-start’ 1968). Th e fi lm’s futuristic image suggests into life each and every day; the electro- that androids are stronger and more capable magnetic charge needs to be renewed than humans. Androids could only be told constantly. Th ere is nothing natural or apart from humans by the use of advanced given about it. (Braidotti, 2006: 211) equipment to detect feelings and emotions through their eyes, and the most advanced

Science14 & Technology Studies, Vol. 26 (2013) No. 2, 14-28 Science & Technology Studies 2/2013 androids were not even aware that they starting point in her cyborg confi guration. were not human, since they were given false (Haraway, 1991: 150). Th e ICD device is a memories of non-existent childhoods. Th e small, battery-powered electrical impulse portrayal of androids in Blade Runner calls generator programmed to detect cardiac into question what it means to be human arrhythmia and correct it by delivering a or machine. Th e ambiguity of several chock of electricity. It is implanted under characters urges us to ask, what does it mean the skin. Th e device appeared in the US in to live in a time dominated by scientifi c and 1980 and in Denmark in 1989. More and technological imaginaries (Balsamo, 1997)? more people are under treatment, both Although the characters in Blade Runner are those surviving severe heart problems and science fi ction, the question remains highly heart attacks. Increasingly ICD are also relevant in order to appreciate what ‘Patient used prophylactic (Køber et al., 2006). ICD 2.0’ is about? patients appear as any human in the society, ‘Patient 2.0’ is a modern term. ‘Patient’ as it is invisible for others how they embody literally means suff ering, and refers to complex contemporary human-machine people who are aff ected by the action of relations. One needs ‘blade runners’ so to others, i.e. medical institutions, doctors speak, doctors with advanced equipment to etc. Th e digits ‘2.0’ refer to a new version tell the diff erence. of a web-based information infrastructure. Haraway’s cyborg fi guration (1991: Following the modern idea of progress 149) builds on a blurring of key modern the implied suggestion seems to be that distinctions, such as human versus machine, ‘2.0’ possesses the potential to empower/ organic versus inorganic, and natural emancipate patients by off ering them more versus artifi cial, which contemporary opportunities of participating in their own scientifi c approaches in biology as treatment. Emancipation literally means, ‘to well as communication sciences have come out from under the hand of’ (Lerner, brought about (Haraway, 1991: 149). Th e 1986: 237). Th us ‘2.0’ denotes not only new, approach diff ers from sciences operating but better than ‘1.0’ in the sense that the on essential categories of the human, the patient potentially becomes less dependent organism, the machine etc. and challenges on other people and gain more freedom. distinctions between what belongs to Th e idea is not that the patient becomes nature and what belongs to culture. Th ose ‘more patient’ as the numbers go up, or distinctions ‘implode’ when sciences work ‘more entangled’ in the infrastructure as the by ‘translating the world into a problem of science fi ction imaginary suggests. It reads coding and ,’ relying as a modern human centred term rather on command, control, and communication than a post human term. mechanisms that connect humans and We investigate controversies machines. Mind, body, and technologies regarding human versus post-human are ‘on very intimate terms’ (Haraway, 1991: perspectives through a cyborg lens and 165). focus on patients with an implantable Looking into the ICD device cardioverter defi brillator (ICD) hooked infrastructures, we are curious to learn up to a remote monitoring system. Th ese how sciences and stakeholders imagine patients are literally as beings and manage ICD patients and what kind of relying on a cybernetic ‘command, realities they help bring about. Th e cyborg control and communication’ mechanism approach invites us to include popular the phenomenon that Haraway took as

15 Science & Technology Studies 2/2013 images of ICD patients, as well as the by biological feedback and monitored the practices implicated in their treatment. eff ects. In what follows, we explore how ICD Th e goal was to develop drugs and patients are imagined in the public space of devices that would make it possible for the Internet from the perspectives of two of a human to adapt to an extraterrestrial the largest ICD technology manufacturers. environment through what they called a In addition, we move to a heart clinic ‘participant evolution’. Th ey imagined that at a university hospital to decipher the scientists had a great role to play in making knowledge production in the treatment evolution progress much quicker than a of the patients, the infrastructures and ‘natural evolution’ was able to bring about. the involvement of the patients in the Paradoxically, the idea was to free astronauts collaboration. Subsequently, we bring the from a cumbersome artifi cial environment various theoretical as well as empirical that imitated worldly conditions in order for images together to discuss diff erences them to survive in outer space. According between modern and cyborg approaches to the historian Ronald Kline (2009), even in understanding patients and their ethical though those cyborg ideas involved serious implications. interventions into the human body, such We embark on this journey, by going as artifi cial organs, hypothermia, drugs, fi fty years back in history and look at the sensory deprivation, and cardiovascular genealogy of the term cyborg in order models, Clynes and Kline thought of the to emphasize Haraway’s vision and its changes as strictly related to extraterrestrial implication for making sense of ICD patients survival conditions, without impinging on and open up the notion ‘Patient 2.0’. the human in his or her earthly habitat: ‘Cyborgs would be humans with some Cyborgs for Earthly Survival organs only temporarily altered or replaced by mechanical devices. On returning to When Donna Haraway coined the term earth, the devices would be removed and cyborg in the early 1980s, she was unaware normal body functions restored’ (Kline, of its former use in another fi eld (Markussen 2009: 342). et al., 2000: 10). Th e term fi rst appeared in Haraway’s cyborg vision in ‘Cyborg 1960 in connection to experiments in the Manifesto’ (Haraway, 1990) diff ers radically fi eld of medical (Kline, 2009: from those ideas, both in terms of the 333). Engaged in bioastronautics, Manfred perception of the body and of the authority Clynes and Nathan Kline introduced the of science. Despite their ambitions about term as an abbreviation for ‘cybernetic fusions of human and machine, Clynes organism’ (Clynes & Kline, 1960). Th ey and Kline’s cyborg imagery implies that built on ’s defi nition of an ‘organic’ body can be extraordinarily cybernetics as the entire fi eld of control manipulated without losing its and , whether in the characteristics or being marked. Haraway’s machine or the animal. Th e term was meant vision is cleared of the innocence as well as to indicate a literal fusion of human/animal the anthropocentrism that characterizes the and machine, as in the laboratory mouse early cyborg imagery. A distinction between they experimented with by implanting an a natural and a participant evolution is osmotic pump. Th e researchers used the irrelevant when it no longer makes sense pump to inject drugs at a rate controlled to speak of nature in the singular and as a base on which cultures build. In addition,

16 Pernille Bjørn and Randi Markussen her vision of science is very diff erent from implying immediate presence of such the heroic and anthropocentric idea of a objects or, what is the same thing, their science and scientists who transcend earthly fi nal or unique determination of what conditions. Haraway’s slogan ‘Cyborgs can count as objective knowledge at a for earthly survival’ does away with the particular historical juncture. (…) Bod- dualist distinction between extraterrestrial ies as objects of knowledge are material- and terrestrial survival and the idea of a semiotic nodes. Th eir boundaries mate- heroic masculine science that overcomes rialize in social interaction. Bounda- the shortcomings of the body in space. ries are drawn by mapping practices; Her catchphrase stresses immanence: ‘objects’ do no pre-exist as such. Objects Cyborgs are we, earthly creatures in a are boundary projects. But boundaries world increasingly marked by cybernetic shift from within; boundaries are very communication technologies and scientifi c tricky. What boundaries provisionally imageries. ICD patients stand out as an contain remains generative, produc- apparent example. Th e cyborg fi guration tive of meanings and bodies’ (Haraway, emphasizes that they are indeed unique, 1991: 201f). yet at the same time, we as contemporary subjects are connected in an enlarged sense Scientifi c representations do not mirror of a sociomaterial community. nor control a passive reality, but act as Th e cyborg invites us to take a closer interventions in a dynamic reality in look at how a body comes into being and Haraway’s pragmatic material and relational to question entrenched ideas about an approach. Whether cyborg indicates organic body as opposed to an artifi cial one. analogies or literal human-machine fusions Alluding to Simone de Beauvoir’s famous is not important in her pragmatic and statement, ‘one is not born a woman’ nonrepresentational context. ‘Th e cyborg (Beauvoir, 1952), Haraway argues that the is text, machine, body, and metaphor – same is true for organisms. She off ers the all theorized and engaged in practice in term ‘the apparatus of bodily production’ to terms of communication’ (Haraway, 1991: capture the generation of bodies and other 212). Haraway’s cyborg fi guration has been scientifi c objects in scientifi c knowledge widely explored in feminist, cultural and production (Haraway, 1984: 200). Nature science studies of contemporary culture does not work as ‘raw material’ for science, and sociotechnical practices. Th e feminist and the body is not a blank page for social philosopher Rosi Braidotti describes the and scientifi c inscriptions, a passive object cyborg as a ‘connection-making entity, a of knowledge, not unlike the imagery we fi gure of interrelationality, receptivity and saw in the early cyborg discourse. Haraway global communication’ (Braidotti, 2006b: states: 200). Th e fi guration invites us to rethink the unity of human beings by suggesting ‘I wish to translate the ideologi- an enlarged sense of community as an cal dimensions of ‘facticity’ and ‘the ethical implication. Braidotti introduces organic’ into a cumbersome entity a noncognitive idea of understanding called a ‘material-semiotic actor.’ Th is (Braidotti 2008: 184ff ) and emphasizes unwieldy term is intended to highlight aff ectivity and endurance as opposed to the object of knowledge as an active, rationality as a positive force that fulfi ls meaning-generating axis of the appa- a subject’s capacity for interaction and ratus of bodily production, without ever freedom, no matter the position (Braidotti,

17 Science & Technology Studies 2/2013

2006a: 148). She argues that an ethics of cultural representations of the body as sustainability that does not have the human seriously as scientifi c representations and, at the centre encourages an enlarged sense just as importantly, to study how scientifi c of community. and medical practices impact our lives. In her infl uential study ‘Technologies Infrastructural inversion is a way to of the Gendered Body. Reading Cyborg explore the cyborg fi guration (Bowker & Women,’ another feminist scholar, Anne Star, 2002: 34). Infrastructural inversion Balsamo, understands the cyborg as a emphasizes the non-neutral eff ects of hybrid with asymmetrical boundaries: technologies, especially technological infrastructures. Infrastructural inversion Every cyborg image constructs an ‘means recognizing the depths of implicit opposition between machine interdependence of technical networks and human, at once repressing simi- and standards on the one hand and the real larities and highlighting distinctions. In work of politics and knowledge production this way it defi nes the meaning of both on the other’ (Bowker & Star, 2002: 34). An the term ‘human’ and the term ‘artifi - ICD patient may appear as an individual cial.’ Signs of human-ness and, alterna- with an implant; the inversion points to the tively, signs of machine-ness function infrastructure that the person depends on, not only as markers of the ‘essences’ in this case an array of interdependent, non- of the dual natures of the hybrid, but neutral technical networks and standards, also signs of the inviolable opposi- as well as the politics and knowledge tion between humans an machines. production, without which neither person But because the cyborg embodies both nor device would survive. According to Star, ‘natures’ simultaneously, the result- the cyborg is, in a sense, the relationship ing hybrid is neither purely human nor between standardized technologies/ purely machine. Th e distribution of its infrastructures and local experience; the dual dispositions is never simply sym- cyborg is between, yet in relationship with, metrical, and the proximity of each to the categories (Star, 1991: 39). the other and the combination of dis- We want to focus on the tensions in the similar parts produces a hybrid often cyborg fi guration between standardized unrecognizable as any familiar person- medical-device technologies and how they age. (Balsamo, 1997) are implicated in local events of patients and healthcare practitioners and experiences in Balsamo underlines the contradictory manners where none of them can be reduced elements in the fi guration as well as the to the other. How we defi ne objects and draw inability to reduce a hybrid fi gure to either their boundaries have consequences. How of its components. In addition, Balsamo are we to understand the role of science shows how the material body is a critical when we take into account the complex symbolic resource for cultural expression, infrastructures involved in surviving as ICD at the same time as its symbolic form is patients? constructed in interaction with material bodies. Furthermore, she argues that Access to ‘ICD Patients’ fi ctional narratives and images serve as cognitive maps of cultural arrangements We approach the case of ‘ICD patients’ by (Balsamo, 1997:159ff ). In line with Haraway, studying the manufacturers‘ visions and she urges us to take fi ctional and popular the hospital practices involved in home

18 Pernille Bjørn and Randi Markussen monitoring of ICD patients. Th e market implants and the number is increasing, for ICD implantations with the capability with approximately 700 new patients for remote monitoring of the ICD patients’ each year (Anonymous, 2012). Th e clinic conditions is dominated by two medical specializes in medical device implantations, device manufacturers, who design, build, which includes ICDs. Th e heart clinic and maintain the medical devices and employs mostly physicians and bioanalysts, the technical infrastructures required: who assist with implantation as well as Medtronic and Biotronik. Medtronic is an monitoring of ICDs. Th e medical device American-founded company established representatives are also present in the in 1949, today a multinational company clinic. Th ey are typically former heart clinic specializing in disease management employees, who have been recruited by the technologies including ICDs. In 2002 manufacturing company. We focus on the they created the Medtronic Carelink practices involved when patients with ICDs Network; today 250,000 patients at nearly come in for a check-up at the heart clinic. 24 clinics in 20 countries are connected to Following Haraway (1990), Braidotti Carelink (Medtronic.com). Biotronik is a (2006), Balsamo (1997), and Bowker and European-founded company established Star (2002), the ubiquity of science and in 1963 specializing in pacemakers and technology in society, so well-illustrated ICD manufacturing. In 2000, Biotronik by ICD patients subjected to remote introduced their remote home monitoring monitoring, makes it relevant to examine system, which is used in 3500 clinics across images of science outside laboratories more than 55 countries (www.biotronik.de). and, in the case of medicine, in hospitals To examine the manufacturers’ and medical practices. Especially with the perspective on ICD implants, patients, expansion of the Internet, companies have and infrastructures, we searched the two an opportunity to address many groups, websites for all information about the ICD in our case patients, their families and the remote monitoring devices directed at public, as well as relevant professional patients written in English. Th e two websites groups. explain remote monitoring diff erently. Th e Biotronik website presents several short The Manufacturer’s Imaginary: The videos portraying the patient as well as the Patient in the Middle of Nowhere healthcare professionals in relation to the ICD device and the remote monitoring. Our fi rst stop in order to explore a cyborg Th e Medtronic website portrays the patient approach is the manufacturer’s imaginary in terms of patient stories presented as and cognitive mapping of their relation narratives as well as pictures. We made the to ICD patients, as represented in their videos and the stories the centre of analysis. website. Modern sciences, technosciences, Despite the diff erences across the websites, rely heavily on research and development the patients are characterized in similar in private and global companies, and ways. ICDs are no exception. Investigating Studying the hospital practices around the manufacturers’ perspectives on the monitoring of ICD we observed the work patients, we fi nd that Biotronik explains the practices within a heart clinic at a Danish idea behind the ICD technology inventions university hospital. Approximately half as ‘products that would work as close of the heart failure patient population to nature as possible’ (ref: http://www. in Denmark (3000 patients) have ICD biotronik.de/). Th e image of getting close to

19 Science & Technology Studies 2/2013 nature presumably indicates that the device apparently worked so well that our idea of makes life less painful and complicated for ‘nature’ and how it works is shaped by the patients. But even though ‘nature’ appears idea of a regulatory system, just as the idea as a self-explanatory stable standard in their of a regulatory system is shaped by its use design approach, the nature they are getting in describing nature. Why some metaphors close to is described in a specifi c scientifi c in science work more eff ectively than others language. We learn how Biotronik Research is an interesting question (Fox Keller, 1988). & Development created a feature for the It turns out that cybernetic metaphors ICD called ‘closed loop stimulation’, which constituted a resource for a number of quite integrates ‘the pacemaker into the body’s diff erent biological agendas from the 1950s natural regulatory system. Th is allowed it (Fox Keller, 2002: 149). Th e rhetorical use [the ICD] to react to the patient’s changing of the idea of ‘getting close to nature’ in the physical and related mental activity’ (ref: ICD manufacturer’s communication bears http://www.biotronik.de/). witness to the success of mapping nature It is clear from these quotes that ‘nature’ cognitively in this manner. fi gures as a system and as an ideal, in some Let us take a closer look at how Biotronik respects similar to the cybernetic ideas put envisions ICD home monitoring. forth by Clynes and Kline (1960). Th e idea Figure 1 contains pictures from a Biotronik of the body as ‘a natural regulatory system’ movie portraying ICD patients and what belongs to a specifi c scientifi c language. home monitoring implies. Th e fi rst picture It is at the same time a description that presents a white, middle-aged, middle-class allows for implementing the technology, as man fi shing in a small boat, completely on nature, the body, is described in a language his own amid beautiful, natural scenery – the technology can understand. Th e ICD is a calm lake surrounded by mountains and based on the idea that it can be smoothly trees. He is immersed in the wild, enjoying integrated into the bodily functions, not what seems to be his leisure or perhaps only physically but also mentally. retirement time; the natural scenery acts Metaphors in sciences and in other fi elds as a symbol of personal freedom, of being work by making two subjects interact, in outside social or other constraints. Home this case the subject ‘nature’ and the subject seems to be where the heart is, so to speak. ‘regulatory system’ (Black 1979 (1954)). Th e Similarly, the ‘universal’ nuclear family meanings of the two subjects interact with appears when, at one point in the movie, one another and create similarities. Th e he comes ashore and is met by his wife and idea that ‘nature’ is a ‘regulatory system’ has younger child, a boy.

Figure 1 . ScreenshotsS h from f the h Biotronik Bi ik patient i movie i on home h monitoring, i i www. biotronik.de, June 2011.

20 Pernille Bjørn and Randi Markussen

Th e ‘front stage’ in this imaginary the patient’s involvement in the monitoring presents the patient as an ordinary person, practice during remote monitoring is able to enjoy life, free to move without any presented as ‘all without the slightest patient ties nor cumbersome connections and interaction’ (Biotronik.de). In this perfect wires. Th e following clips in the movie (see world patient interaction is not viewed as also Figure 1) reveal the backstage and part desirable, but should be minimized. of the infrastructure involved in making Now shifting to the other ICD the image possible. We see the two options manufacturing company, Medtronic, we ICD patients have for home monitoring fi nd similar imaginaries. Medtronic presents devices: Bedside version and the mobile their home monitoring devices as: version, which resembles an old-fashioned cell phone. It is then revealed that the man Convenience – Th e Monitor is easy to in the boat is wearing the mobile monitor use. With the simple, one-touch moni- on his belt while fi shing. We see how data tor, you transmit device information is transmitted continually, indicated in the over a standard analogue phone line. movie by ‘rings of transmission’. Th en we If you have an implanted heart device watch a male physician sitting in his offi ce with Conexus Automatic Monitoring, monitoring his computer screen, where the your information may be sent automati- data from the patient apparently ends up. cally while you sleep. Peace of mind We also see how the physician takes the – People who use Monitoring report telephone and calls the patient, presumably a sense of reassurance knowing their to inform him about his condition. doctor has access to important infor- Th ese pictures from the movie convey mation about their heart health. If you the impression that home monitoring feel symptoms, your clinic may ask you is easy for the patient and that the to send information so your doctor can patient is free to live his life as if he were review your condition. If your device independent and self-contained. Easiness has the Conexus feature, alert notifi ca- is an important argument in innovation and tions may be sent directly to your clinic design (Markussen, 1995: 158). It is usually as defi ned by your doctor.’ (http://www. the life of the ‘receiver’—the user, the medtronic.com/patients/heart-failure/ customer, the client, or the patient—that is living-with-a-device/carelink/carelink- portrayed in those terms. In contrast to the network/index.htm, emphasis added) patient, science and the manufacturers are depicted as service apparatuses, constantly In this description, the material-semiotic available to monitor the patient’s data, and actors involved in the apparatus of continually in control and ready to contact bodily production belong to science and the patient if they detect something the technology. Th e design of the device seems patient needs to know. Implicitly, it also to be created with the aim of ‘leaving out the shows that the free and easy life comes patient’ as much as possible. Th e patient’s with a price, which can be described in the freedom and peace of mind are described as shape of the monitoring device and the data eff ects of not knowing or being involved as a sent to the physician. Th e patient’s body material-semiotic actor. Th e special feature, seems to work primarily as ‘raw material for ‘Conexus’, makes it possible for the device to humanization’ (Haraway, 1991: 198), and send all the required information while the monitoring the heart is all about scientifi c patient is sleeping, where sleeping seems to and clinical data and data transmission— be equated with not feeling anything. Th e numbers, graphs, etc. Also, the image of boundaries around the object are drawn in

21 Science & Technology Studies 2/2013 a manner that leaves out the dependency in home monitoring. But, even as we enter the relation between patient and physician. a public hospital, we do not leave the It shows that the infrastructure involved in workspace of private companies, since the making monitoring at a distance possible device representatives are also working is portrayed primarily from the perspective in the heart clinic assisting the healthcare of the physician, in the transmission of data professionals. Th e boundaries between the ready for interpretation and sense-making. public and the private have been reworked Peace of mind comes not only with the price and reconfi gured (Haraway, 1991: 151). of the connections and wires, but also in Medical device companies play a crucial surrendering to the power of the physician, part in the apparatus of bodily production and freedom from feeling their own of ICD patients. A representative from symptoms and body. Freedom may even the manufacturer is involved in the translate into loneliness, had the nuclear implantation; at an observation in the family picture in the Biotronik movie not heart clinic we learned that during the referred to a myth of eternal happiness. implantation this privately-paid person has To summarize: the manufacturers’ the authority to make the patient’s heart perspectives delegate power and authority stop under controlled circumstances to to themselves and the sciences involved, ensure that the device works. In practice, and downplay uncertainty, lack of control, this means that when a patient is sedated endurance and sensations on behalf of both for surgery, one of the people assisting the themselves and the patients. Th e cyborg procedure is a vendor representative with lens allows us to point to the ideal which the overall responsibility to make sure that structures those subject images, the ideal of the technical device works. Th e apparatus a free-standing, individual human subject, of bodily production of ICD patients thus and implicitly, even paradoxically, of includes the public /private infrastructure science and scientifi c progress as guarantors of healthcare professionals. of this ideal. It may come as no surprise that Besides providing the device itself and the websites are made up of recognizable assisting with the surgical procedure of and well-known, not to say banal and trivial, inserting the device, the medical device stereotypes. It is remarkable, however, manufacturers also provide geographically that the cognitive mapping of those new distributed global monitoring of the heart. technologies are primarily understood in a When an ICD is inserted into a body, the manner that nurtures ideas of one nature, ICD data are sent through the technical uncontested scientifi c authority as well as a infrastructure and stored on servers in middle class nuclear family. We will return Europe to communicate updates to the heart to this after a visit to the university hospital clinic. Th ere is a connection between the in order to explore the scientifi c practices fl esh and muscles and the wires measuring the patients are involved in in this context. and monitoring the heart inside the body of the patient. Muscle vibrations are refi gured The Clinic: Inverting the as ICD data, a coding that makes particular Infrastructure and Discovering an mappings and measurements possible, Enlarged Sense of Community and reconfi gures the heart in specifi c ways. Th ere is a wireless connection between the Th e public-funded heart clinic we visited device in the body and the telemonitoring implants ICD devices in the patients and system, located as a mobile device on the conduct device follow-up visits as well as patient or as an item at the bedside. Th is

22 Pernille Bjørn and Randi Markussen telemonitoring system is then connected through means other than ‘patients carrying to the device manufacturer, as well as to the an ICD’. ICD patients might be senior heart clinic using the telephone network. citizens, children as young as 3 years of age, Th us, the connection is established and elite athletes in their 20s, blue-collar workers maintained by the telecommunication in their 30s, clerks, CEOs, mothers, fathers, companies, but is in fact handled by the the un-employed, university students, etc. patients and their families in relation to the In the following we will study an ICD device manufacturer. Th ese various entities patient’s (in this case an elderly woman) act invisibly and regularly for this particular follow-up visit to the heart clinic, which apparatus of bodily production to survive. takes place once every three or six months. Telecommunication, family, devices, Elsewhere we have given a more detailed monitoring technologies etc. are all part of description of the practice (Andersen et al., the apparatus of bodily production of ICD 2010). In this context, we will focus on the patients. cyborg heart as a scientifi c object and how In addition, the telemonitoring system the bioanalysts and cardiologists make sense acts as a strong material-semiotic actor. It of data, and work together with the patient. automatically assesses the ICD data that the Th e imaginary from the manufacturers’ patients regularly send to the Heart Center. websites conveyed the perspective that Th e assessment can be tricky and is therefore physicians immediately knew how to further controlled by other important decipher and control their data and the actors, the healthcare professionals. Even objects they were working with. However, though device follow-up can be done we found in the clinic that cyborg hearts by telemonitoring, co-located meetings are boundary projects, and boundaries are (where the patient travels to the hospital) enacted in the practices where they come are still important. In some cases patients together (Haraway, 1991: 201ff ). One needs travel far (like in Greenland while being to make sense of data by diagnosing the treated at Copenhagen University hospital patient’s body directly or indirectly through in Denmark) to receive device follow-up. instruments and technologies (Hogle, 2008: ICD patients are also connected to local 842). hospitals, and this local hospital manages How to render a body visible and legible is the main examinations and treatments. the topic in Medical Talk and Medical Work Th erefore, device follow-up at the heart (Atkinson, 1995). Atkinson quotes a study clinic focuses primarily on the device. of the use of echocardiography that showed However, investigating devices implanted how doctors in the beginning tended to in people includes concerns for the general diagnose the unusual as abnormal, which condition of the patient; it is not merely resulted in a proliferation of minor heart informing the healthcare professionals diseases: about the device. Possible interventions based on the interpretation of ICD data In practice then echocardiography has concern not only re-programming the not resolved the problem of uncertainty. device, but also changing the medication, It requires interpretation of a complex which requires cooperation with the local moving image according to sometimes hospital. uncertain professional criteria. Th e If one looks for the typical ICD patient, a image is recognised as being operator visit to a clinic will quickly convince you that dependent, rapid advance in the tech- it is impossible to characterize ICD patients nology means constant changes in tech-

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niques and there is seldom evidence Th e conversation is based on joint eff orts from autopsy or operation to substanti- to make sense of the numbers. It illustrates ate the diagnosis of disease in the well how boundaries are questioned in such patient. (Atkinson, 1995: 64 quoting a way that both data and the experiences Daly 1989: 104) of the patient are being problematized. A shock does not exclude the experience of When the bioanalysts and cardiologists a nightmare. In addition, bad dreams are in the clinic are browsing through the playing a role in how the bioanalyst make information they receive on their screens, sense of the data from the device. Th e they are faced with similar problems of healthcare practitioners use the information uncertainty in investigating curves and provided by the patient’s experience and graphs in order to examine the values of the mental state to test the data. Th e bioanalyst data – are they stable or not? also explained that even if the device data looked ‘good’ and did not give rise to any An elderly woman is being examined. concerns from the point of the device, if the Th e bioanalyst asks the patient: ‘Please patient had concerns based on experience, let me know how you feel, and what they would re-examine the patient and the kind of medication you take?’ (…) Th e data and perhaps make an intervention. patient holds the ‘stick’ (reader) near Th e process of data interpretation the heart. ‘When was this?’(…) Th ere are during telemonitoring is similar. When the marks—February 9th, April 20th, and bioanalysts and cardiologists in the clinic April 29th.’ Th e patient says that she had are browsing through the information they not felt anything. She cannot remem- receive on their screens, they are faced ber these dates. But at some point the with problems of ambiguity in investigating patient remembers: ‘Uhh, by the way, curves and graphs in order to examine the I did wake up screaming with a night- values of the data: Are they stable or not? mare a few weeks ago, but I did not feel Are they correct? Sorting out which data much.’ (…) Th e bioanalyst (…) explains: deserve to be discussed with the ‘additional ‘(…) Th ey were all during the night; source of information’, namely the patient maybe that’s why you did not notice. present in ‘fl esh and blood,’ is a crucial Maybe you had some bad dreams?’ node when enacting the boundaries of the Th ere is a conversation between the car- object created and the reconfi guration of diologist and the bioanalyst—they stand the further treatment of the patient. Th is is around the machine placed on a low in contrast to the situation with the woman table near the patient. (…) On the screen patient on the manufacturers’ website, of the machine they can ‘see’ the device where the physician easily distinguishes history. ‘Can we do anything to measure between a dream and a shock initiated these?’ asks the cardiologist. After many by the device and provides a ready-made examinations and discussions (…) they answer to her question. summarize: ‘Well, we can say that the Making a body legible involves machine works as it’s supposed to; how- uncertainties. In cases where the patient ever, the question remains: should we seems to feel good but the data are critical, do anything?’ (…) (Observation notes, they would not hesitate to defi ne the object May 2009) of knowledge diff erently and make an intervention. Adding aff ective material- semiotic actors, such as the patient’s

24 Pernille Bjørn and Randi Markussen sensations and experiences and the are not the only source of authority. Patients sensibility of the practitioners, improves the are encouraged to recall bodily aff ects, protocol and the quality of the decisions. such as nightmares and dreams, in order to Th e episode demonstrates the qualities localize things in the past that the data show that Rosi Braidotti’s version of the cyborg might have triggered jolts of electricity, emphasizes: Aff ectivity, connection- things that might have left other material- making, interrelationality, receptivity, and semiotic traces, such as dreams. Activities an enlarged sense of community that does occurring while the patient is asleep are not have the human at the centre. Obviously not considered irrelevant because they the patients need the medical practitioners’ are beyond the subject’s rational reach. input in the treatment they are subjected An enlarged sense of community does not to. But the episode reveals that information refer to the inclusion of patients as rational about the patients’ experiences are crucial subjects as the modern idea of ‘Patient 2.0’ in the medical practitioners’ reading of could suggest, just as the infrastructure does computer data. Even if the patients may not work as a neutral substrate on which believe that the computer-based data are human interactions and interpretations more objective and hesitate to bring in take place. As an analytical device cyborg their own sensations and experiences, the heart exemplifi es an enlarged sense of practitioners try to convince the patients community, based on aff ectivity, endurance that they need their personal aff ective and connection-making, an image in input and evidence in order to make sense contrast to the idyllic nuclear family we of the data in the best way. Th is tension found in the manufacturers’ imaginary and between computerized standardized data to the idea of the empowered Patient 2.0. and experience – the patients as well as Cyborg heart urges us to pay attention to the practitioners’ ability to make sense of the material and semiotic interconnections sources of information – is precisely what and interdependencies we are involved in, Leigh Star captures in describing the cyborg as patients as well as in any other capacity. as something between, yet in relationship to, standardized technologies /infrastructures Cyborg Heart and local experience (Star, 1991: 39). Science and technology has critically Donna Haraway’s Manifesto co-opted been described as ‘a culture of no culture’ the cyborg fi gure and took it from the (Traweek, 1992), as if it were governed by utopian space in cybernetics and dystopian rationality beyond social constraints yet universes in science fi ction to the everyday worked as an empowering force, an image lives of organisms and people on a global in line with Clynes and Kline’s (1960) ideas scale: Cyborgs for earthly survival. Th e as well as the manufacturers’ imaginaries. idea of reconfi gurations of materialities, We suggest cyborg heart as an analytical textualities and subjectivities replaced the device that describes an aff ective apparatus technological determinism situated within of bodily production and captures how the idea of a progressive development of a ‘mind, body and technologies are on very rational world, or it’s opposite a dystopian intimate terms’ specifi cally in surviving nightmare. As an analytic device cyborg as ICD patients (Haraway, 1991: 165). heart uncovers modern ideas of subjectivity Patients are not addressed as rational actors and technology in the images of science accountable for their intentional behaviour, and medicine represented on the websites and science and the medical practitioners of ICD manufacturers, and in the idea of

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‘Patient 2.0’ Th ese modern imaginaries in their own treatment in an active and bear a resemblance to what Annemarie rational manner, seeking information about Mol has termed the ‘patient as customer’ their disease, and engaging themselves (Mol, 2008: 14). According to Mol this ideal actively in monitoring their condition at is based on a logic of choice, and celebrates home. Th e technology is seen as enabling the notion that making the right choices is the patient to be less dependent on science the core activity of chronically ill patients. and medical authorities. Technological In our case the patient is portrayed as being development guarantees progress served by healthcare professionals who are particularly on behalf of the patient: remotely monitoring them, which indicates Yesterday we had infrastructure 1.0, today that selecting the right device on the market, 2.0, and in the future maybe an even more and relying on the professionals involved advanced 3.0. in monitoring it, will enable you to live a Cyborg heart confi gures patients, sciences ‘normal’ life as if you did not suff er from as well as medical practitioners, companies a condition. Th e concept ‘logic of choice’ and technologies very diff erently. It relates underlines that this imaginary not only to Annemarie Mol idea of a ‘logic of care’, belongs to banal advertisements, but has an interactive, open-ended process that is important political eff ects in promoting a attuned to the diffi culties of living with a market approach to healthcare. chronic condition and which off ers support Th e manufacturers’ imaginary provides to patients (Mol, 2008: 25). It shares with freedom for the patient by hiding her Mol the idea that identity is multiple as well or his dependency, at the same time as as corporeal; neither patients nor scientists technologies extend the power of the are idealised; nor are they seen as stable doctor and the manufacturing company. and unambiguous categories that interact Th e home monitoring device is designed with each other. It underlines the relations to reduce connections, so, for example, and interdependences among human as the information from the patient’s heart is well as nonhuman entities in constituting automatically transmitted to the physician. an aff ective apparatus of bodily production. Th e inscribed user identity envisions a Th e empirical insights from our cyborg person, who is not involved in her or his analysis of the work in the clinic highlights treatment, but leaves it to the professionals the entanglement of elements in making to make sense of the data and manage her medical decisions such as re-programming or his condition (Akrich & Latour, 1992: the device, performing a new surgery, or 259). In contrast we discovered in the clinic changing the medication. Th e data derive that the object created during monitoring of from many sources, numbers on the screen, the illness is not simply data as provided by as well as the patients’ sense-making of the technology device. Instead, the object bodily and emotional sensations. As we of concern during medical monitoring saw in the example, ‘bad numbers’ in practices includes the patient in mind and combination with ‘good interpretations’ body, a cyborg heart, with all its complexities. meant that the medical personnel decided Th e ‘Patient 2.0’ idea diff ers from the not to intervene. Conversely, if the numbers manufacturers’ imaginary primarily by are ‘good,’ but the patient feels ‘bad,’ they turning the perspective on technologies and will probably intervene. Th is extraordinary expertise ‘upside down’. Th e idea embodies collaboration is captured in the idea of the the ideal of an empowered patient, and cyborg heart based upon aff ectivity rather emphasizes that patients should be involved than rationality, an enlarged sense of

26 Pernille Bjørn and Randi Markussen community that does not have the human Atkinson, P. (1995) Medical Talk and Medical at the centre. We prefer cyborg heart to Work (London: Sage Publications). a logic of care, as the genealogy of care Balsamo, A. (1997) Technologies of the underlines the idea of a liberal defi nition of Gendered Body. Reading Cyborg the individual and of a human intentional Women (United States of America: Duke subject. University Press). We can – still – learn from the way the de Beauvoir, S. (1952) Th e Second Sex (New androids in Blade Runner question what is York Bantam: Parshley, H. M. trans). human and what is machine. We argue that Black, M. (1979 (1954)) ‘Metaphor’, ICD patients with their cyborg hearts are Proceedings of the Aristotelian Society best understood as an extended community 55: 273–94. with ethical implications, as in the slogan: Bowker, G.C & S.L. Star (2002) Sorting Th ings Cyborgs for earthly survival: survival on Out: Classifi cation and Its Consequences earth, and survival of the earth. (Cambridge: Th e MIT Press). Braidotti, R. (2006) Transpositions: On Acknowledgments Nomadic Ethics (Cornwall: Polity Press). Braidotti, R. (2006a) ‘Posthuman, All CITH Co-constructing IT and Healthcare too Human. Towards a New Process (CITH-project) is a 4-year project funded Ontology,’ Th eory, Culture and Society by a grant from Th e Danish Council for 23(7-8): 197-208. Strategic Research #2106-07-0017 and Braidotti, R. (2008) ’Th e Politics of Life as involves partners from IT-University of Bios/Zoe,’ in A. Smelik & N. Lykke (eds), Copenhagen, Danish Technical University, Bits of Life. Feminism at the Intersections Copenhagen Business School, Copenhagen of Media, Bioscience, and Technology University, and Copenhagen University (Seattle: University of Washington Press): Hospital. 177-192. Clynes, M.E. and Kline, S. (1960) ‘Cyborgs References and Space’, Astronautics 5(9): 26-27, 74- 76. Andersen, T., P. Bjørn, F. Kensing & J. Moll Daly, J. (1989) ‘Innocent murmurs: (2011) ‘Designing for collaborative Echocardiography and the diagnosis of interpretation in telemonitoring: Re- cardiac normality’, Sociology of Health & introducing patients as diagnostic Illness 11(2). agents,’ International Journal of Medical Dicks, P. (1968) ‘Do androids dream of Informatics 80(8): 112-126. electric sheep?’ (Ballantine Books). Akrich, M. & B. Latour (1992) ‘Summary of a Fox Keller, E. (1988) ‘Feminist Perspectives Convenient Vocabulary for the on Science Studies’, Science, Technology of Human and Nonhuman Assemblies’, & Human Values 13(3-4): 235-249. in W.E. Bijker & J. Law (eds), Shaping Fox Keller, E. (2002) ‘Making Sense of Life. Technology – Building Society: Studies in Explaining Biological Development Sociotechnical Change (Cambridge: Th e with Models, Metaphors, and Machines’, MIT Press). (Cambridge Massachusetts: Harvard Anonymous (2012) ‘Lev livet med en University Press). ICD [Live life with an ICD],’ http:// Haraway, D. (1991) ‘Simians, Cyborgs and rigshospitalet.dk. Women: Th e Reinvention of Nature Free Associations’ (London: Books).

27 Science & Technology Studies 2/2013

Haraway, D. (1990) ‘A manifesto for cyborgs: Star, S.L. (1991) ‘Power, technology and Science, technology, and socialist the phenomenology of conventions: on feminism in the 1980s,’ in L. Nicholson being allergic to onions’, in H. Law (ed), A (ed), Feminism/Postmodernisme (New Sociology of Monsters: Essays on Power, York/ London, Routlegde). Technology and Domination (London/ Hogle, L. F. (2008) ‘Emerging Medical New York: Routledge). Technologies’, in E.J. Hackett, O. Strathern, M. (2000) ‘Abstraction and Amsterdamska, M. Lynch & J. Wajcman decontextualisation: An anthropological (eds), Th e Handbook of Science and comment or: e for ethnography’, pre- Technology Studies (London: Th e MIT publish version on http://virtualsociety. Press): 841-874. sbs.ox.ac.uk/GRpapers/strathern.htm). Kline, R. (2009) ‘Where are the Cyborgs in Traweek, S. (1988) ‘Beamtimes and Cybernetics?’, Social Studies of Science Lifetimes: Th e World of High Energy 39(3): 331-362. Physicists’ (Cambridge MA: Harvard Koselleck, R. (2004) ‘Futures Past: On the University Press). Semantics of Historical Time’, in Tribe, Zanutto, A., Storni, C., Piras, E., and K. trans. (New York: Colombia University Danholt, P. (2011) ‘Th e shaping of Patient Press). 2.0: Exploring agencies, technologies Køber, L., Møller, M., Pedersen, A. K., and discourses in new healthcare Pehrson, S., and Videbæk, L. (2006) practices: Call for special issue‘, Science ‘Retningslinier for profylaktisk ICD Studies (http://www.sciencestudies.fi / behandling [Guidelines for prophylaxis node/2070) ICD treatment],’ DCS Vejledning, Dansk Cardiologisk Selskab (2). Pernille Bjørn Lerner, G. (1986) ‘Th e Creation of Patriarchy’ University of California, Irvine (New York, Oxford: Oxford University Informatics Press). 6095 Bren Hall; Markussen, R., Lykke, N. and Olesen, F. California, USA (2000) ‘Cyborgs, Coyotes and Dogs. [email protected] A Kinship of Feminist Figurations. IT University of Copenhagen Interview with Donna Haraway’, Kvinder, Technologies in Practice Køn & Forskning (2): 6-15. Rued Langgaards Vej 7 Markussen, R. (1995) ‘Constructing DK-2300 Copenhagen easiness- historical perspectives on work, [email protected] computerization, and women’, in Star, S. L. (ed), Th e Cultures of Computing. 158- Randi Markussen 180. IT University of Copenhagen Mol, A. (2008) Th e logic of care: Health and Technologies in practice the problem of patient choice (New York, Rued Langgaardsvej 7 USA: Routledge). DK-2300 Copenhagen S [email protected]

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