10.6092/issn.2038-3460/17174
As a response to the spread of biomedical imaging, this conversation explores crucial aspects related to the production, interpretation and use of body images within and beyond laboratories and clinics. Regula Valérie Burri’s contribution raises questions about the implications of medical imaging technologies and practices for both medical treatments and patients’ identities. Annamaria Carusi explores the intertwined epistemic and ontological roles of visualizations in the field of personalized medicine within two contexts of mediation: that of basic research and biomedical application; and and that of biomedical research and health care systems. Finally, Aikaterini A. Aspradaki discusses the use of body images from a bioethics perspective, focusing on the autonomy of persons and the ethical, economic, legal and social issues raised by the visualizations of bodies.
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Aikaterini A. Aspradaki
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Tecnoscienza – Italian Journal of Science & Technology Studies
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Visualising Bodies Within and Beyond Laboratories and Clinics
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2014-07-14
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165-189
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Aikaterini A. Aspradaki
2014/07/14
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University of Crete
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Visualising Bodies Within and Beyond Laboratories and Clinics
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                                                                     Conversations

Visualising Bodies Within and Beyond
Laboratories and Clinics
!
    Regula Valérie                                Annamaria           Aikaterini A.
        Burri                                       Carusi             Aspradaki
    HafenCity University                  University of Copenhagen     University of Crete
        Hamburg
!
    Abstract: As a response to the spread of biomedical imaging, this conversa-
    tion explores crucial aspects related to the production, interpretation and
    use of body images within and beyond laboratories and clinics. Regula Valérie
    Burri’s contribution raises questions about the implications of medical imag-
    ing technologies and practices for both medical treatments and patients’
    identities. Annamaria Carusi explores the intertwined epistemic and ontolog-
    ical roles of visualizations in the field of personalized medicine within two
    contexts of mediation: that of basic research and biomedical application; and
    and that of biomedical research and health care systems. Finally, Aikaterini A.
    Aspradaki discusses the use of body images from a bioethics perspective, fo-
    cusing on the autonomy of persons and the ethical, economic, legal and so-
    cial issues raised by the visualizations of bodies.

    Keywords: visualisation; bodies; biomedical imaging; personalised medicine;
    bioethics.

    Corresponding author: Regula Valérie Burri, Science and Technology
    Studies, HafenCity University Hamburg, Überseeallee 16, D-20457 Hamburg,
    Germany – Email: regula.burri@hcu-hamburg.de




Pictures, Practices, Paradoxes: Medical Imaging and Mo-
dernity

Regula Valérie Burri

   In this contribution, I argue that medical imaging technologies and
practices imply several paradoxes. While, on the one hand, medical imag-
ing opens up a set of new options and possible choices for patients and
physicians, it narrows down, on the other hand, the scope of perceptions,
agency, and alternatives in certain situations. The new freedom of (diag-

TECNOSCIENZA
Italian Journal of Science & Technology Studies
5 (1) pp. 165-189 - ISSN 2038-3460
www.tecnoscienza.net                                   2014
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166                                                         Tecnoscienza - 5 (1)

nostic) choice is contrasted, for example, by the power of the diagnostic
facts and the rhetorics of the images on self-perceptions, or the lack of an
adequate treatment for several indications. Paradoxes are implied all
along the imaging trajectory – from the construction of the images and
their interpretion to the ways they are used and deployed in (biomedical)
practices within and beyond the labs and clinics. Paradoxes are thus im-
plied in the whole process, which should be studied in the context of so-
cial studies of scientific imaging and visualization (SIV): production, en-
gagement, and deployment (Burri and Dumit 2008), in other words, the
production, interpretation, and use of images (Burri 2008, 2012).
    This contribution explores the paradoxes and unintended dilemmas
related to medical imaging. It raises questions about their implications for
medical treatments and patients’ identities, and finally discusses the find-
ings in the context of the modern societies we live in.


1. Blackboxing the Apparatus: The Technology Paradox

    The first paradox relates to medical technology. Imaging apparatuses
such as computed tomography (CT) and magnetic resonance imaging
(MRI) scanners are very complex machines. However, their output – the
image – does not reveal the complexity of the apparatus that was used to
produce it. The technology is blackboxed and made invisible in a body
scan. A medical image thus appears to be a photorealistic depiction of na-
ture instead of a sociotechnically constructed representation in many situ-
ations. “It’s almost a photograph of the brain”, said a neuroscientist dur-
ing my fieldwork in imaging centers of large university hospitals, and a
professor of neuroradiology held that through these pictures, you can
look directly into someone’s head (see also Dumit 2004; Joyce 2005; Burri
2008, 2013).
    Whereas in the early days of imaging technology, CT and MRI body
scans were not able to display any clear contours of body parts, today’s
images are high in resolution and contrast, thus making the sophisticated
technology ‘transparent’ and able to disappear behind the image (Borck
2001; Burri 2008). The technology paradox thus implies that the better
developed and more complex an imaging technology is, the more likely
people are to forget about it once they look at the images.


2. Flood of Images: The Selection Paradox

    Once images are interpreted, a further antagonism comes into play.
The process of understanding the images and making up a diagnosis in-
cludes a selection paradox. Physicians appreciate the advantage of images
to provide information on the inside of the body in a noninvasive manner.
Visual screening makes surgery often unnecessary. Physicians also say
Burri, Carusi, and Aspradaki                                           167
that images allow them to perceive information at once, just by looking at
one image, whereas it would take them much more time to read the in-
formation provided by an accompanying report. Such “visual value”
(Burri 2012, 49) allows people to perceive visual information simultane-
ously.
    In order to make this one glance possible, a lot of images have to be
produced. Even if the number of images constructed depends on the pa-
tient, the examination, the physician, and the local routines, there are
usually several dozens of images produced in one imaging examination.
An MRI examination of a person’s head, for example, may include two
series of 24 images each with a contrast agent (which enables the visuali-
zation of the blood vessels) and three series of 24 images each without
applying a contrast agent, thus fabricating 120 brain scans in total. In
some centers, these images are printed out on film and the whole exami-
nation results in several films, each of them containing 12-20 images.
Other centers do not print out digital scans at all.
    To make sense of an imaging examination, a radiologist does not con-
sider all fabricated images. Usually, the medical technologist in charge
picks a selection of a few images, which she or he presents to the radiolo-
gist for interpretation. The final diagnosis is thus based on only one or a
few images, although a large amount of images had to be produced to
make this one glance possible.


3. Increasing Uncertainty: The Epistemic Paradox

     After their production, the images have to be interpreted to get more
insight into the human body. The increased knowledge that is gained
through the new digital possibilities of looking inside a patient’s body,
however, is often accompanied with an epistemologically nondefined sit-
uation. In other words, the certainty gained through the visualization of
the body may at the same time imply an increase of uncertain knowledge.
For example, when someone is examined with MRI because she or he
suffers from a headache, diffuse changes of brain regions may accidentally
be detected on a scan. In some cases it is not clear what such changes
mean – they may be a symptom of a tumor or may not be pathological at
all. The further course of a detected change often remains unclear. The
interpretation of such images may thus increase both the unknowns and
the epistemic uncertainty of a situation instead of gaining in-depth medi-
cal knowledge and achieving certainty about the course of an illness.


4. Lack of Treatments: The Option Paradox

    Although in most cases the interpretation of images does contribute to
168                                                            Tecnoscienza - 5 (1)

the diagnosis of an illness (or helps to exclude the existence of such), such
stabilized medical knowledge may include an option paradox. While, on
the one hand, the diagnostic advantages of MRI are widely recognized
today, and diagnostic skills have increased in recent decades, there is not
always an adequate therapy at hand to treat the diagnosed illness. The gap
between the diagnostic possibilities and the available treatment for cer-
tain indications is growing.
    For example, medical imaging is widely used in the evaluation of Alz-
heimer’s disease. This debilitating disease affects approximately 5 million,
mostly elderly people in the United States, and 50-70 percent of an esti-
mated 7.3 million Europeans who suffer from different types of demen-
tias1. Although Alzheimer’s disease was first described 100 years ago, the
causes of the disease are complex and not yet fully understood. Up to this
day, there is no adequate treatment to heal Alzheimer’s but only treat-
ments aimed primarily at slowing progression of the disease rather than
halting it completely or reversing its progression. This produces the para-
doxical situation that, on the one hand, the diagnostic tools (including
MRI) are very advanced but, on the other hand, this new freedom of di-
agnostic choice contrasts with the limitations of available treatments.
    Another example is the diagnosis of brain aneuyrisms. By the use of
imaging technologies such as magnetic resonance angiography, a brain
aneurysm, which is a localized, blood-filled bulge in a blood vessel of a
brain, can be quite easily detected. Today, elaborated techniques for
treatment called surgical clipping and coiling are available, and less inva-
sive methods such as endovascular management have been developed in
recent years. Nevertheless, there is a lack of adequate treatments for some
patients. In several online forums, patients report that because of the size
or location of their aneurysm, it can’t be treated. A user called newtons63,
for example, recounts that: “doctors are watching and waiting as it is in a
[too] dangerous area for coiling procedure”2 and another patient with
two aneurysms holds: “The smaller one could not be operated on because
they didn’t have anything small enough to stint it”3. Similarly, the user
peaches217 claims that: “the surgeons say that my aneurysm is inopera-
ble”4. In cases when aneurysms have not yet ruptured – and may never do
so – physicians are very cautious about invasive procedures. While treat-
ments of brain aneurysms have advanced over recent years, the gap be-
tween diagnostic and available therapeutic methods is thus increasing.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
1
  US National Institutes of Health (2012) and http://ec.europa.eu/health/major_
chronic_diseases/diseases/alzheimer/index_en.htm#fragment1 (retrieved May 10,
2014). The data refer to the year 2006; see also introduction section.
2
  See http://neurotalk.psychcentral.com/thread52715.html (retrieved March 18,
2014).
3
  See http://www.bafound.org/survivor-stories-2 (retrieved March 18, 2014).
4
  See http://neurotalk.psychcentral.com/thread52715-2.html (retrieved March 18,
2014).
Burri, Carusi, and Aspradaki                                                   169


5. Forcing Decisions: The Agency Paradox

    Once medical images are interpreted, they force physicians and pa-
tients into decision situations that may be difficult to cope with. Despite
the uncertainty of the further course of a detected and only potentially
dangerous disease, patients have to decide whether to get special treat-
ments such as surgery or not. A discovered aneurysm may remain stable
and not rupture at all during a patient’s life course. This is recalled in pa-
tient forums, for example, by a neurosurgery physician assistant called
Mike: “Remember, most people with aneurysms die with them… unrup-
tured”5. It is thus a mere potential risk that a patient is confronted with.
Nevertheless, once an unruptured aneurysm is diagnosed, patients and
doctors have to deal with the situation and are forced to decide whether
to opt for an intervention (i.e. to clip or coil the aneurysm, or treat it by
endovascular management) or refrain from taking any activities and just
monitor the cerebral abnormality.
    Taking a decision may be especially difficult in cases of accidental di-
agnostic findings when the detected abnormality is not causing any pain,
like in the case of a patient called Raglet, who reports that she or he did
not have any symptoms and thus did not know about having any medical
problems at all.6 Patient Anna’s story illustrates the difficulties of decision
making regarding choice of treatment. Being concerned about a pain in
the side of her face, the 40-year-old schoolteacher went to see a doctor
who sent her for a CT scan and an MRI. She was diagnosed with two
brain aneurysms. Anna reports: “As a family, we had to make very serious
decisions… Should we do nothing and hope [the aneurysms] never burst
or should we risk two invasive operations?”7. After having several consul-
tations with a top neurosurgeon, weighing all the factors, and calculating
the odds, Anna and her family finally opted to go for the clipping surgeries.
    Within families, such decisions may be controversial, as a female pa-
tient recounts, who agreed to the surgery but whose husband “was totally
against” her decision8. In such situations, patients have to trade off two
forms of risks – the risk that the aneurysms may rupture, and the risk of a
complex neurosurgical intervention. These decisions are very difficult to
make, given the uncertainty of the situation: “They said I could live to be
70 or die in my sleep tonight”, peaches217 notes in her forum contribu-
tion, and seeks advice from other patients by asking them: “Did you get it



!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
5
   See http://neurotalk.psychcentral.com/thread152664-2.html (retrieved April 4,
2014).
6
  See http://neurotalk.psychcentral.com/thread52715.html (retrieved April 4, 2014).
7
  See http://www.bafound.org/annas-story (retrieved March 18, 2014).
8
  See http://www.bafound.org/survivor-stories-2 (retrieved March 18, 2014).
170                                                             Tecnoscienza - 5 (1)

fixed?” .  9

     Mostly, decisions are not the result of mere medical assessments or
simple rational calculations but rather the outcomes of complex consid-
erations that include psychological and social aspects. For some patients,
it is simply no option to live with the knowledge of having a bulge in their
brain that may rupture at any time. Mike, the above-mentioned forum
user, explains: “What may eat [yo]u up psychologically is thinking you
have a ‘ticking time bomb’ in your head”10. Such patients may take the
risk of surgery even if there is a certain chance that their aneurysm will
never burst.
     Medical imaging thus forces patients and doctors into situations to
decide for or against certain activities. The new options and possibilities
that imaging technologies and practices open up – the new freedom of
choice – go along with the obligation to indeed make a choice. Other
medical technologies and diagnostic methods, such as genetic testing, re-
sult in a similar agency paradox. Nevertheless, medical images allow peo-
ple to see abnormalties with their own eyes. Images are thus visually more
persuasive than genetic testing results, as patients confirmed during my
fieldwork, and may thus make a greater imposition on one’s self-
perception (Burri 2008).


6. Shaping Self-Perception: The Identity Paradox

    Such “visual persuasiveness” (Burri 2012, 52) involves the next antag-
onism: the identity paradox. The new freedom of diagnostic choice ena-
bled by medical imaging is in contrast to the shaping power of the images
regarding self-perception. If a person, for example, gets a brain scan that
shows no abnormality in medical terms, this person knows that this find-
ing is evaluated as a biological fact, and that she or he will thus be consid-
ered as normal by both physicians and society. A ‘normal’ finding – in
which a neurologist can’t see any major differences when comparing a
brain scan with a so-called normal or average brain image – is considered
as a confirmation that this person legitimately feels good. If, however, she
or he rather experiences being ill, a ‘normal’ finding makes an imposition
on him or her: because of the lack of any medical indications, this person
is expected to feel well. A normal finding, and thus the absence of any
medically classifiable disease, can otherwise be a great relief to persons
who suffer, for instance, from an enduring headache. Based on an imag-
ing examination, an illness such as brain tumor can be excluded. On the
contrary, if the finding is abnormal, the person is assigned a legitimation
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
9
   See http://neurotalk.psychcentral.com/thread52715-2.html (retrieved March 18,
2014).
10
    See http://neurotalk.psychcentral.com/thread152664-2.html (retrieved April 4,
2014).
Burri, Carusi, and Aspradaki                                           171
for his or her possible pain and is thus stigmatized as being in a problem-
atic condition even if she or he subjectively feels healthy.
     Although historians have shown that boundaries of what is socially
considered normal and abnormal (Canguilhem [1966] 2007; Foucault
[1963] 1973, [1975] 1995), or objective and non-objective (Daston and
Galison 1992), are contingent and change over time, patients know that
images are mostly considered as evidence by both physicians and the pub-
lic. Any knowledge based on a person’s medical images will thus shape
the way this person perceives him or herself (Dumit 2004). The evidence
of medical images thus includes an identity paradox, that is, an antago-
nism between the new freedom of choice and the shaping power of the
images for people’s self-perception and identities.


7. Conclusions

    The paradoxes related to medical imaging correspond to the ambigu-
ous feature of contemporary societies described by Beck et al. (1994, 76),
who have pointed out the characteristic of reflexive modernity to offer
new choices to individuals: “choice has become obligatory. This is a sub-
stantive thesis about everyday life today,” the authors note. At the same
time, they state that people constantly have to opt for one of the offered
choices. Drawing on this analysis of the contemporary modern society,
medical imaging can be interpreted in a wider context. On the one hand,
it offers a set of new diagnostic choices for physicians and patients, yet,
on the other hand, it limits the agency and alternatives in certain situa-
tions, for example through fashioning the ways people feel and see them-
selves. Medical imaging technologies and practices open up spaces while
at the same time restricting them. They offer new choices but force peo-
ple into steady processes of decision making – a situation that is enforced
by cutting-edge biomedical and other emerging technologies. Just like
these complex technologies, medical imaging may increase unknowns and
non-knowledge, which have been termed by Ulrich Beck and Peter
Wehling (2012) as further characteristics of contemporary society. In this
understanding, medical imaging technologies and practices can be seen as
a characteristic feature and expression of modern technosocieties.


                                     ***
172                                                             Tecnoscienza - 5 (1)

Personalised Medicine: Visions and Visualisations

Annamaria Carusi

    The new generation of computational life sciences that is bound up
with ‘big data’ and all its associated forms of data gathering, processing,
modelling, simulating and visualising are currently positioning themselves
for ‘translation’ into personalised medicine, or what has become known
as P4 medicine (preventive, predictive, personalised and participatory
medicine). Currently the ground is being prepared for this ‘translation’ in
a raft of position papers, funding calls and medical science and health
care strategies11. No doubt social, cultural and political actors will play a
role alongside science, and will be co-responsible for the forms of person-
alised medicine that may be actualised.
    The notion of translation is not an especially good one to describe the
process of bringing science to application as it does not capture the ex-
tent to which both science and application shift and mutate along the way
(Löwy 1996). The formation of a personalised medicine informed by sys-
tems biology (which from now on I’ll refer to as systems personalised
medicine) will occur through the co-evolution of the technoscience of
computational systems biology with experiences and understandings of
personalised medicine. While ‘personalised medicine’ is generally under-
stood as ‘tailoring diagnosis and treatment to particular individual pa-
tients’, the meaning of each of the terms in that statement (‘diagnosis’,
‘treatment’, ‘individual patients’) is still indeterminate in many ways.
Scholars have raised questions about the definition of individuality in a
genomically informed personalised medicine, which is closer to a statisti-
cal ensemble than to anything in which a particular person may recognise
themselves (Jones 2013). Even though proposing a different approach12, a
systems biology informed mode of personalised medicine will come up
against similar issues: how will the personal be carved out of the systems
of the science and research?
    In the process of forming the systems personalised medicine, the vari-
ous visualisations that permeate computational systems biology (as they
do any form of computational science) will play a key role. Information
visualisations (for example, that visualise large quantities of data so that
patterns become evident in them), network visualisations (that visualise
the output of network modelling) and computational science visualisa-

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
11
   See for example Auffray et al. (2010); Wolkenhauer et al. (2013); Kyriakopou-
lou and Mulligan (2010); Hunter et al. (2013); Hood and Flores (2012); European
Commission (2011).
12
   See Carusi et al. (2013) for an in-depth discussion of an example of computa-
tional systems biology, and Wolkenhauer (2014) for an overview of different
modes of systems biology.
Burri, Carusi, and Aspradaki                                             173
tions (that are the material output of the computational simulation of a
dynamical process), are just some of the variants used. In computational
science (as in many other forms of science), they are hybrid visual arte-
facts, with complex causal-computational etiologies (Carusi 2012). These
visualisations are an integral part of the scientific process, playing a cen-
tral role in the construction of the experimental phenomenon: that is,
what is observed as the outcome of the experiment, and what this can be
taken to be evidence for. They play a crucial role in materialising the bio-
logical process under investigation as a system, and in making that system
something that can be considered real, or something that can engage with
as real. By ‘the real’ I do not mean anything particularly philosophically
burdensome. In using it, I am echoing the practices of the scientists in the
domain, for whom what is real in their own and others’ experimental
practices is a constant preoccupation. My use of it indicates what experi-
menters, researchers, and ultimately individuals who will encounter per-
sonalised medicine in the health care systems, take to be real, experience
as real, and interact with as real. This might be the experimental phe-
nomenon or research context, or the way people, individual and collec-
tive, experience the personal as real in the personalised health care sys-
tem. This use of ‘real’ does not imply a pre-existing, pre-formed real, but
precisely something that is negotiated over, struggled over, formed and
transformed.
    Visualisations do not do this on their own but as part of a experi-
mental system where, however, they play a role that cannot be reduced
simply to showing the output of the prior computation (Carusi 2011 and
2012; Spencer 2012; Chandrasekharan and Nersessian 2011). In their role
of making the outputs of simulations and other forms of computations
materially available for observation, manipulation and interaction, they
have intertwined epistemic and ontological roles: the mode in which they
provide evidence for the process as a system also has ontological conse-
quences for defining both what is ‘realistic’ in the visualisation and what
is real in the experimental system. They also have ontological conse-
quences for the disciplinary and other social groupings that are brought
into contact, and need to cooperate or participate in order to realise the
vision of systems personalised medicine. Because they have this epistemo-
ontological role in virtue of being material artefacts, that can be shown,
displayed, interacted with, discussed, and so on, they are also sites of me-
diation between the different spaces of systems biology research, and the
different modes of collaboration that are required for it. Elsewhere I have
discussed the role of visualisations in mediating the context of forging
new collaborations between wetlab and drylab (Carusi 2008, 2011). Here
I shall discuss two other contexts of mediation: between basic and ap-
plied biomedical research, and between research and health care each of
these in turn. As in Carusi (2011), I continue here the approach of track-
ing visualisations that are emerging, are not entrenched and over which
there is disagreement, as in these cases it becomes more evident what
174                                                                   Tecnoscienza - 5 (1)

might be ontologically at stake in contexts of mediation .       13




1. Between Basic and Applied Biomedical Research14

    This context of mediation can occur in places where academic re-
searchers interact with clinicians, or in other contexts such as pharmaceu-
tical companies or drug regulatory institutes. The example I discuss is
taken from an initiative to show that computational cardiac modelling can
be useful for clinical research, in that it can propose new hypotheses that
are not readily available using widespread clinical cardiological tech-
niques. It is an example of the mode of systems biology that constructs
models of dynamic processes in order to investigate the mechanisms that
give rise to them. Obtaining data that are relevant for modelling and sim-
ulation is a driver for establishing collaborations in this context too; how-
ever, the shift to the clinic or other biomedical context also brings an en-
gagement with experimental systems geared towards clinical research
questions and concerns. There are many routes to showing the role of the
visualisations in making this crossover into applied biomedical contexts
such as the clinic. Here I shall discuss just one example episode involving
the work of a computational systems biologist, a mathematician by back-
ground, who – in a collaborative team that included a ‘converted’ clini-
cian who had contributed clinical data from in vivo human hearts – had
used modelling and simulation to show that there may be factors that give
rise to arrhythmias (irregular heartbeat) that have not yet been considered
by clinicians. Getting clinicians’ interest more broadly would be benefi-
cial because it may result in access to more clinicians’ data, or even to ex-
periments targeted to the hypothesis explored by the model, and there-
fore to a contribution to the development of the model. The particular
research reported on focused on the tissue level of electrical activity in the
heart; in this case, the systems approach is evident in the interest in the
interactions between sub-cellular, cellular and tissue levels, and ultimately
with other electro-physiological levels of the ‘whole heart’. In our conver-
sations the researcher stressed that in the simulations, the aim is to
achieve a correspondence with what happens in the real heart. Since the
pattern of electrical activity is a dynamic process, the only way it can be
seen is through a movie as the visualised output of the simulation. This
visible pattern is a crucial aspect of the evidence for the claim being
made. However, the production of the visible pattern necessitates a
change in the parameter space of the data (fast speeds are made faster
and slow speeds are made slower) – and in this respect, there is not an
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
13
    For a discussion of the mediating role of images see also Carusi and Hoel
(2014); and Hoel and Lindseth (2014).
14
   ‘Basic’ is of course always relative. By ‘basic’ here I mean science that is not tar-
geting a specific application.
Burri, Carusi, and Aspradaki                                                 175
exact correspondence with the ‘real heart’. The researcher was very con-
cerned to make this clear to viewers of the visualisations.




      Figure 1 – The visualisation of mathematically modelled and computationally
                  simulated action potential re-entry at tissue level15

    The work was presented at conferences through presentation and
posters, particularly targeting clinicians. Presentations included figures
that were similar to the electrocardiagrams that clinicians are used to, as
well as an extremely striking visualisation in the form of a flow of swirls of
colours to show patterns of Action Potential Duration Reentry (the form
in which electrical activity of the heart is salient to experiment) [see Fig-
ure 1]. However, clinicians tended to respond sceptically to that visualisa-
tion. Their response, as reported by the researcher, was: “this is not what
is happening in real hearts”16 – not because they object to the distortion of
parameter space of the data (which they do not remark upon). Rather
there is a lack of correspondence between what is shown in the visualisa-
tion of these mathematically modelled and simulated patterns of ar-
rhythmia at tissue level, and what they see in their own research. The
computational visualisation is of a localised bit of mathematically mod-
elled tissue showing up relationships between ion channels; it is not of a
whole heart and it is not generated by an automated connection with
physical hearts. Clinicians, instead, deal in visualisations with a very dif-
ferent logic, that is visual output in the form of tracings made by auto-
mated connections via electrocardiagrams, catheters and needles, at-
tached to or inserted into human research subjects. The visual output of
these experimental settings – an example of which is found in Figure 2 –
is interpreted as being of ‘real hearts’ against the background of these set-
tings. Their reservations about the visualisation are not elicited by distor-
tions of the parameter space, but by the fact that the visualisation does
not map onto these experimental settings. Not only is its smooth, swirling
pattern formally (or we could say aesthetically) very different from the
jagged tracings of an electrocardiogram, but how these visual features are
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
15
   Availble at http://www.plosone.org/article/info:doi/10.1371/journal.pone.0052
234 (retrieved May 14, 2014).
16
   Fieldwork notes.
176                                                                   Tecnoscienza - 5 (1)

related to ‘real hearts’ is not evident to them; they have no implicit setting
against which to interpret these mathematical visual objects.




              Figure 2: Typical visualisations used for cardiac electrophysiology
                                   using electrograms17

     Considering that these cardiac clinicians consider ECGs in the con-
text of ‘whole hearts’, the researcher reflected that perhaps if he had tried
visually to contextualise the tissue in the whole heart, “maybe then they
would see it happening in real hearts, but then it would look as though
this is a 3D model, and this is not a 3D model”18. However, the context
that seems to be missing is the link to the experimental setting that makes
it, for clinicians, of a real heart. What is at issue in the ability to see the
visualisations as evidence providing is a tension over what counts as a ‘re-
al heart’. For the systems biologists, reality depends upon the way that
data are obtained (from which experiments) and from the ability of the
mathematical model to fit the data thus derived. It is this fitting that
makes the model ‘realistic’. But clinicians fail to recognise these patterns

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
17
   Reprinted with permission from Vigmond!and!colleagues!(2009).!Available at
http://ieeexplore.ieee.org/xpl/login.jsp?tp=&arnumber=4785512&url=http%3A
%2F%2Fieeexplore.ieee.org%2Fxpls%2Fabs_all.jsp%3Farnumber%3D478551
2 (retrieved May 14, 2014).
18
   Fieldwork notes.
Burri, Carusi, and Aspradaki                                                   177
as occurring in real hearts: the mathematical model with which they are
presented cannot be contextualised in anything they recognise as a ‘real
heart’ – and the modeller’s attempts to contextualise it for them runs the
risk of misleading them as to the nature of the model.


2. Between Research and Health Care System

    Big data approaches to systems biology are predicated upon techno-
logical capabilities to collect and process large quantities of data, yet
those data do not always already exist. In the case of the vision of person-
alised medicine that issues from the big data mode of systems biology,
there is a reliance on users of the health care system to be data producers,
and many of its rhetorical efforts are geared to this end. Because this part
of the vision of personalised medicine is still programmatic and future
oriented, my research has focused on the documents and other public en-
gagement output that attempt to gain support for this vision, or to show
what concrete form it could take. This vision of systems personalised
medicine stresses the participatory aspect of P4 medicine. For example:

             “Patients and consumers will be a major driver in the realiza-
         ton of P4 medicine through their participation in medically orient-
         ed social networks directed at improving their own healthcare.”
                                                   (Hood and Flores 2012)

    The ‘big data’ mode of systems personalised medicine in fact depends
on data acquired from large populations. Scientists in this domain talk of
a ‘data cloud’ for any individual of trillions of data points, from the ge-
nomic to the social level and everything in between (Hood and Flores
2012). Data can be acquired through a myriad different encounters with
the health care system; but importantly, to be really effective, it needs ac-
tive participation from health care users, for example, through self-
monitoring via social media and through their willingness to use a whole
new range of devices to gather data. This kind of participation entails
non-trivial social, economic and political transformations of health care,
which are impossible to broach in this article (see Prainsack 2014). I shall
focus on a representational issue. Like vaccination programmes, the bene-
fits to any particular individual of this mode of personalised medicine,
depend on the participation of very large numbers of people. There are
different rhetorical arguments that can be made for participation, but one
is to appeal to the stake that any individual has in this massive data gath-
ering exercise. This is the tactic that is sometimes used. For example,
‘The Digital Patient’ is a project funded under the auspices of the Virtual
Physiological Human Network of Excellence, with the aim of describing
how computational systems biology can be transformed into personalised
medicine. Computational systems biology aims to construct models of the
178                                                                  Tecnoscienza - 5 (1)

organs and physiological processes of the human body and the digital pa-
tient is envisaged as a model of each individual patient:

              “The Digital Patient is a vision of a coherent digital represen-
          tation of each patient that is used to provide an integrative frame-
          work for personalized, predictive, and integrative medicine.”
                                                          (Hunter et al. 2013)

      The website of the project has a more patient directed version of this:

              “The Digital Patient is an envisaged super-sophisticated com-
          puter program that will be capable of generating a virtual living
          version of yourself. When this is achieved, it will be possible to
          run ‘simulations’ of health and disease processes on the virtual or
          ‘digital’ you, and use the results to make predictions about your
          real health. It will also be possible to determine the best treatment
          specifically for you. This is termed ‘personalised medicine’, and is
          intended to be the future of healthcare.”19

    The project’s exploration of the digital patient includes an in-depth
consideration of the visualisations that would be used in the patient-
doctor encounter. The highly detailed account of what would be required
of these visualisations is in itself a good indicator of how significant they
are in the interface between the patient and the systems mode of person-
alised medicine. There is much to say about this, but here too, for the sa-
ke of brevity I shall focus on just one detail. From the patient’s perspec-
tive, their ‘corresponding’ digital patient will be an avatar. Included in a
draft of the Digital Patient roadmap is the following statement:

              Avatar lookalike.
              Develop rapid, automatic and low-cost strategies to individual-
          ise the physical appearance of the Avatar to that of the patient.
          This provides emotional intensification, as used in Microsoft’s
          Xbox Live Service or Nintendo’s Mii, which can affect individual
          behaviour, including healthy behaviour.
                                          (Digital Patient Project, undated)

   In a short animated movie,20 that is a kind of scenario of what such a
consultation might be like, a patient is shown an avatar, which is at first of
a generic human that (in the patient’s voice) is described as “breathing
and moving its eyes”, and when made to jog, “started to sweat”. We hear
the patient say that he does not understand what this has to do with his
check up, but he is then asked to stand on a platform and is scanned by a

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
19
  Available at http://www.digital-patient.net (retrieved May 10, 2014).
20
  Available at http://www.youtube.com/watch?v=JijSCaVrYhw (retrieved May
10, 2014).
Burri, Carusi, and Aspradaki                                              179
laser, and “suddenly the model on the screen changed and it was me... it
even had my face”, down to “all my skin blemishes”. Two of these blem-
ishes are picked out on the avatar, and “a robotic arm came and found
them on me”. The movie then goes on to describe other forms of interac-
tion between this highly personalised avatar and the patient. In this whole
consultation scenario, the line between what is personal to the patient, via
those trillions of data in ‘his’ data cloud, and what is personal to him, via
the avatar, is blurred: in fact the ‘emotional involvement’ depends on this
blurring.
    It must be stressed that this has not been developed, and interestingly,
this visual strategy does not appear as such in the final roadmap. Howev-
er, it is telling that this visual strategy of getting patients to recognise
themselves in the generic mass of data that systems personalised medicine
actually is, could even be considered as part of the roadmap. It points to a
fissure in this vision of otherwise seamless all inclusive data, a fissure be-
tween data for systems biology and the personal in any way that ‘personal’
is actually experienced. It will take work to knit together the ends of this
fissure, a work that we might expect, will result in a new form of person-
al, bridging experience and data. For this very reason, it is of social, cul-
tural and political importance how this new personal is forged.


3. Conclusions

    Just as in contexts of mediation between wetlab and drylab, visualisa-
tions figure in multiple ways in mediations between basic research and
biomedical application, and between biomedical application and health
care system. They are part of observation and evidence of experimental
systems; but they are also depended upon to communicate with research-
ers who do not share the same experimental system, to policy makers who
must be convinced of the viability of this vision of personalised medicine,
and eventually, to act as an interface between the personalised health care
system, doctors and patients. At each of these junctures, the visualisations
show slippages in what is taken to be ‘real’. These examples have in
common that they are not, or not yet, entrenched. They are visualisations
that are questioned, of which the communicative intent is not smoothly
accepted, or which are programmatic and futuristic rather than actual-
ised. At these points, before the gaps are closed, we have the opportunity
to see the slippages, misunderstandings, and struggles over how to realise
systems personalised medicine. The visualisations that are deployed and
crafted in this process are crucial to the formation of these new realities.
As such, they are also sites around which participation and activism can
occur in the emerging modes of personalised medicine.


                                     ***
180                                                          Tecnoscienza - 5 (1)

Bioethical Issues on Autonomy of Persons in Visualizing
Bodies

Aikaterini A. Aspradaki

1. Introduction

    The research on the “increasingly sophisticated visualization tools”
(Perrotta 2012) in science and technology and their implications – with
emphasis on visualizing bodies by biomedical imaging and body picturing
in a broader sense – is an area of growing interest at the intersection of
the fields of science and technology studies (STS) and bioethics.
    In this context, scholars in the social studies of scientific imaging and
visualization (SIV), for example, have emphasized on a research agenda
including the epistemic status of images in the knowledge generation pro-
cess and the impacts that images and imaging technologies have on social
organization and research communities (Burri and Dumit 2008, 307-308).
Special research interest has been drawn to the “labor- and capital- inten-
sive” nature of imaging and visualization and the related identification of
“hype” in bioinformatics, computer-generated imaging and nanotechnol-
ogies. This hype has been partly attributed to the visual persuasiveness of
scientific imaging, as “a crucial part of contemporary scientific authority”
(ivi, 308-309). Moreover, scientific images of humans have been highly
correlated to issues on the deployment of persuasion because of their
special character of being images of “our own bodies and lives”, our “ed-
ucated” bodies as well as our thoughts and actions regarding an “ideal
and fit person” (ivi, 306). In addition, due to the deeply personal charac-
ter that medical images have in picturing ourselves, scientific images of
humans are considered to be not only persuasive but also “entangling”,
many times in a special relation with our human personhood (ivi, 307).
    At the same time, scholars in bioethics have emphasized on the re-
search work required on the epistemological status of results from imag-
ing studies in sciences. As an example, epistemological considerations on
neuroimaging as a “prerequisite” for the neuroethics have been strongly
discussed (Huber and Huber 2009). The discussion has been illustrated
by the widely used method of functional magnetic resonance imaging
(fMRI) for analyzing brain structure. More concretely, in a common fram-
ing for neuroimaging methods in neuroscience, philosophy of science and
sociology of science into the elaboration of neuroethics discourse, the
concept of objectivity has been challenged in its use to guarantee meth-
odological quality in current neuroscience (ivi, 341-343). Two arguments
have been mainly discussed. The first develops the hypothesis of techno-
logical construction of scientific objects detected by neuroimaging and
concludes that: “the artificial environment of the laboratory situation will
remain an epistemological problem” (ivi, 344). The second considers the
Burri, Carusi, and Aspradaki                                              181
interdependence of theories and data (hypothesis-driven/data-driven ap-
proaches) in neuroimaging research and highlights the problems in the
interpretation of controversially defined cultural and philosophical con-
cepts such as the concepts of self, well-being, and empathy. Finally, a
probability of hypotheses to generate their own phenomena as objects of
research in neuroscience is supported (ivi, 345). Something like that
would be extremely crucial and would raise ethical, legal and social im-
plications in the case of extremely debated concepts such as the concepts
of racism and proneness to mental illness. In particular, neuroimaging re-
search, especially racism research, is referred to have the possibility to
create new diagnostic entities, such as the pertaining to unconscious atti-
tudes and, to provide the potential for discrimination and for legal, finan-
cial and privacy issues (ivi, 347).
    In parallel, scholars in sociological studies of health and illness have
emphasized on a number of problems raised by body picturing visual
methods, including video and photography, in the research methodology
of social life, health and health care (Harrison 2002). More specifically,
four considerations have been suggested to social researchers (ivi, 859-
860). The first is the relationship of visual data with the research ques-
tions and the need of visual data to be used, since it would possible that
the same data would be provided through words or/and that the visual
dimension would be provided without visual display. The second consid-
eration is the “conventionality” of visual methods, such as everyday pho-
tographic practices, if, for example, the responders would be asked to
produce a visual diary of their illness progress, since such photographic
records would encompass only selected social occasions, particular peo-
ple and places and would be framed by particular aesthetic principles.
The third is about the technologies of visual production, since the devel-
opments in camera technologies, audio/video recording, multi-media
software and internet have crucially determined, by also opening new
questions, the provided opportunities for both the access to resources of
visual data and the development of skills required by researchers and par-
ticipants to use them. Finally, the fourth consideration is the ethical issues
of anonymity, confidentiality and privacy raised by the use of health-
related visual materials, since, due to their very nature, much more per-
sonal information can be available to a “public gaze” during investigation
process.
    Taking into consideration all the aforementioned issues raised by vis-
ualizing bodies, a very central area of bioethics, namely the issues regard-
ing the bioethical principle of the respect for the autonomy of persons, is
coming to the fore. It is widely accepted that autonomy has gained a
prominent thesis as a key principle in the field of bioethics. Already in the
ancient Greek philosophy, the term “prohairesis” in the Aristotelian eth-
ics has usually been translated as choice, decision, purpose, will, inten-
tional choice, free choice and, in Epicteus’ Discourses, as moral purpose,
choice and free will (Dragona-Monachou 1978-1979, 309). The word “au-
182                                                           Tecnoscienza - 5 (1)

tonomy” derived from the Greek words “autos” (“self”) and “nomos”
(“rule”, “governance”, “law”). Referring originally to the self-rule or self-
governance of independent city-states, it has been extended to individuals
acquiring a great number of “diverse” meanings, such as “self-
governance, liberty rights, privacy, individual choice, freedom of the will,
causing one’s own behavior, and being one’s own person” (Beauchamp
and Childress 2001, 57-58). In contemporary moral and political philoso-
phy, the concept of autonomy has been used in an “exceedingly broad
fashion” (Dworkin 1988). In particular, autonomy has been equated with
“dignity, integrity, individuality, independence, responsibility, and self-
knowledge”, and identified “with qualities of self-assertion, with critical
reflection, with freedom of obligation, with absence of external causation,
with knowledge of one’s own interests” and also to be related to “actions,
to beliefs, to reasons for acting, to rules, to the will of other persons, to
thoughts and to principles” (ivi, 6).
    In this paper I aim to open a discussion on this principle in the field of
the applications of the visualizing bodies technologies in biomedical im-
aging and body picturing in a broader sense, by posing three questions.
First, could the applications of these technologies enable individuals to
take a more proactive role in the maintenance of their health and help so-
ciety improve health and reduce health costs? Second, what about public
participation in scientific and technological developments in contempo-
rary democracies? Third, what about the understanding and interpreta-
tion of the principle of the autonomy of persons in contemporary applica-
tions of these visualizing bodies’ technologies? I will answer to these
questions and discuss the related bioethical concerns in the next three
sections.


2. Individuality, Resource Allocation and Regulation Issues in Bi-
omedical Imaging

    Researchers in bioethics have worked on the ethical implications for
the “autonomous and relational dimensions of the person” raised by the
use of home-based self-testing diagnostic devices, including biomedical
imaging like computer assisted tomography (Kearns et al. 2010). It is
worth mentioning that these ethical implications have been considered to
be fully understandable long after their initial applications, due to the
“pace of discovery within the biomedical world and its subsequent inter-
face with technological developments” (ivi, 200). Moreover, despite the
suggested potential for such biomedical diagnostic self-testing technolo-
gies to benefit both individuals in taking a more proactive role for their
health and society in improving health and reducing health costs, the pos-
sibility to “push health care away from its relational basis and further into
an individualistic paradigm” has been importantly heightened (ivi, 207).
Then, in a climate of “new pressures” by such offered diagnostic tools,
Burri, Carusi, and Aspradaki                                             183
“isolated individuals” are considered to be forced to decide on their own
whether to use them, how to interpret their results and how to face with
difficult situations coming from the resulting health knowledge for them-
selves and their families (Kearns et al. 2010).
    Furthermore, there is an emphasis in bioethics on the ethical and so-
cial implications of the fostering a “consumerist” approach to healthcare
and health-related services by the use of direct-to-consumer body imaging
services, including computerized tomography (CT), magnetic resonance
imaging (MRI) and ultrasound (Nuffield Council on Bioethics 2010). In
particular, in such a consumerist approach, which puts individuals in the
position of a customer in the marketplace, conflicts have been important-
ly reported. These conflicts are considered to arise between the ethical
values of individuals “being able to pursue their own interests” and those
of state actions in order to “reduce harm, safeguarding private infor-
mation, fair and efficient use of public resources and possibly social soli-
darity” (ivi, 166). At the same time, body imaging services have been
widely advertised and sold directly to asymptomatic individuals by com-
mercial companies as a form of their “health check-up” in a highly sug-
gested health “responsible behavior”. However, the lack of regulatory
frameworks for these private providers to “ensure services are meeting
established standards of quality and safety” has been importantly pointed
out (ivi, 174-178). Appropriate legally constituted regulator schemes have
been then highly recommended (ivi, 178).


3. Health-related Bioethics Oriented Social Movements and
Body Picturing

    While it is widely accepted that the fetus’ ultrasound photos are com-
ing to be crucial in discussing issues of women’s autonomy (Seavilleklein
2009), there has been a tremendous influence of coma patients’ photos, as
body picturing in a broader sense, in discussing issues of dying patients’
autonomy too. The latter could be interestingly illustrated by the world-
famous Quinlan Case and the subsequent constitution of a right to priva-
cy (liberty) in “letting die”.
     In particular, in January 1976, after 2 months of deliberation, the
New Jersey Supreme Court in the United States ruled unanimously in fa-
vor of Karen Quinlan’s parents allowing “the family of a dying incompe-
tent patient to decide to let that patient die by disconnecting her life sup-
port” (Pence 2004, 38). Doing so, the New Jersey Court was the first to
apply the right to privacy in a case of “letting die”, as the Supreme Court
of the United States had not made a comparable decision until that time
(ivi, 38).
    Taking coma Karen’s photos, with the “new” “oppressive” medical
technologies of nasogastric feeding tube and big respirator “unnaturally”
184                                                               Tecnoscienza - 5 (1)

prolonging her dying, has been importantly determined by the respect for
her autonomy and dignity in the reported her parents’ refusal for their
coma daughter having a photography taken to be published in a tabloid.
More specifically, it has been written that:

            A hired security force vigilantly kept Karen from being photo-
       graphed, thus never allowing her condition to penetrate public
       consciousness. During the wait for the later court verdict, a na-
       tional tabloid offered the Quinlans $10,000 for just one picture.
       They refused because they wanted their daughter to be remem-
       bered as she had lived rather than as a coma patient. Ignorant art-
       ists even portrayed her in newspapers and magazines as a normal
       girl resting peacefully so that most people never understood the
       horrible nature of her deterioration.
                                                           (Pence 2004, 32)

     Furthermore, on the basis of concerns regarding the justification of
the bioethical principles of autonomy and dignity in cases such as that of
the Quinlan Case, scholars in social movements in bioethics have empha-
sized on the constitution of the end-of-life social movements as health-
related bioethics oriented social movements (Aspradaki 2008). It is well
accepted that “contentious politics consists of a wide range of portrayals
of concerted social actions aiming to overcome deeply rooted structural
obstacles” (Kousis 2004, 275). In such a context, end-of-life social move-
ments, going beyond the typologies of health social movements (Brown et
al. 2004; Brown and Zavestoski 2004; Epstein 2008), demand institutional
(public) support for legal reforms supporting the “right to die” while
simultaneously changing the relationships between patients, doctors and
the state. They also play a crucial role in the development and strengthen-
ing of the public in view of the omnipotence of biotechnologies, the nego-
tiability of death and more generally the medicalization of life and death
(Aspradaki 2008). More generally, issues of public participation in scien-
tific and technological developments in contemporary democracies have
been highly correlated to deliberative procedural arrangements based on
substantive commitments to autonomy “for the essential establishment of
the equal moral and political value of collectively acting individuals”
(Aspradaki 2013, 13).


4. On the Understanding and Interpretation of the Principle of
Autonomy of Persons

   A minimalist interpretation of individual or personal autonomy often
amounts simply to a right to choose or refuse medical treatments on offer
and to the corresponding obligations of practitioners not proceeding
without patients’ consent. This interpretation has been in accordance
Burri, Carusi, and Aspradaki                                                  185
with an extremely ethically problematic “consumer view of autonomy”
and a highly problematic consumeristic view of justification in bioethics
and beyond (O’ Neill 2002). Alternatively, autonomy, against such “atom-
istic reductions to individual preferential choice” (Tsinorema 2006),
should be interpreted as a “principled autonomy” that is “expressed in ac-
tion whose principle could be adopted by all others” (O’ Neill 2002, 85).
    Moreover, in the aforementioned case of coma patients, the bioethical
principle of autonomy is extremely difficult to enact in the sense of indi-
vidual self-determination and self-expression, if it is not grounded on the
Kantian approach, in other words, on human obligations to respect hu-
man persons and protect their inviolability and integrity (Aspradaki
2008). In this way autonomy is interpreted in terms of human dignity.


5. Conclusions

    Respect for the autonomy of persons seems to be in high relevance to
visualizing bodies. A further investigation in biomedical imaging and
body picturing in both the fields of science and technology studies and
bioethics normative inquiry of moral, social and political challenges re-
sulting from the rapid developments in the life sciences and biotechnolo-
gies, would be very valuable. At the same time, evolving global economic,
social and political crisis makes this need extremely urgent.


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