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Medicine: The Ethics of Care, the Subject of Experiment

Catherine Waldby
Body & Society 2012 18: 179
DOI: 10.1177/1357034X12451778

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Afterword

Medicine: The Ethics Body & Society

18(3&4) 179–192
ª The Author(s) 2012
of Care, the Subject of Reprints and permission:
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Experiment DOI: 10.1177/1357034X12451778
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Catherine Waldby
University of Sydney

So, finally, what is medicine? The question is so compelling

precisely because there is no way exhaustively to answer it. It will
remain open-ended because, as these six articles demonstrate, med-
icine itself is open-ended. The apparent disparities in their fields of
concern – sports medicine, clinical trials, gerontology, military-
strategic uses of medicine, animal models – are indicative of the flex-
ible ways medicine maps itself onto other domains and lends itself to
varying, often conflicting social uses. In these articles, we can see
medical knowledge and therapeutic practices enrolled in various
kinds of market formation (bottled water, pharmacology), subjectifi-
cation (fitness, ageing) and military administration (the Occupied
Palestinian Territory), as well as in the more expected practices of
clinical and experimental research. These examples of medical
hybridity could be multiplied indefinitely, given the thorough diffu-
sion of clinical and public health, forensics and biomedical innova-
tion through the social body. However, multiplying examples will
not necessarily help to elucidate the reasons for medicine’s impres-
sive traction, its ability to modulate and organize the varieties of
life’s unfolding, to use Brett Neilson’s term. What do these articles
and their particular topics tell us about such traction?
One motif we can discern is the mutable relationship between
medicine as an experimental system and medicine as an ethics of
care. This motif is not surprising because it is structural to the forma-
tion of modern medicine. The history of the hospital is one in which
religious forms of care and the alleviation of suffering among the

Corresponding author:
Catherine Waldby
Email: catherine.waldby@arts.usyd.edu.au
http://www.sagepub.net/tcs/

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180 Body & Society 18(3&4)

poor (hospitality) are gradually overlaid with the physician’s empirical

observation and comparative case analysis of illness. These are the
techniques which begin to constitute medicine as a science and the
hospital as a clinical as well as a pastoral space (Foucault, 1979). With
the professionalization of laboratory biology in the late 19th century
and the elaboration of experimental disciplines (physiology, biochem-
istry, immunology) concerned to identify fundamental processes of
life, the empirical, patient-focused practices of clinical medicine are
further inflected through the relations between in vitro and in vivo
science, between bench and bedside. The subsequent history of the
tensions and alliances between the experimental laboratory sciences,
the clinical sciences and the nursing and care commitments of the hos-
pital and the clinic is the topic of vast commentary,1 which I cannot
engage directly here. Nevertheless, the articles in this special issue
give us a partial, yet highly suggestive, account of these different vec-
tors, particularly the ways their relationships are reconstituted in
response to broader historical dynamics.
Most striking, to this reader at least, is the ways that care, in the
sense of care for others, or what Neilson calls relational care, has
been steadily disinvested and de-subsidized, while the experimental
life sciences have become the drivers of entire sectors of the econ-
omy in the developed and many developing nations. The articles
speak to this shift in various ways. Race, Cooper and Neilson account
in different ways for the contemporary privatization and individuali-
zation of care, the move from relational care to care of the self, pre-
cipitated by the withdrawal of the mid-20th-century forms of welfare
care and, I would add, the withdrawal of obligatory housewifely care
for others once available through the Fordist household (Waldby and
Cooper, 2010). Race traces this shift through the optic of hydration,
gives us a history of the new ethics of bodily self-investment and
self-care that emerge from the oil shocks and sharp recessions of the
mid 1970s, and the new consumption markets and practices of every-
day life that they generate. Notable here is the way experimental phy-
siology and sports science are adapted into the everyday life of the
body as running/aerobic cultures begin to take hold among sedentary
professional and white-collar workers. In order for the market in
bottled water to be established, those aspiring to fitness must learn
to interpret their bodies through techniques of detailed, expert assess-
ment, to suspend their former banal experience of thirst and instead

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Waldby 181

substitute biomedically endorsed protocols. Here we can see that the

detailed self-care and complex investment in an ever more elusive
state of optimum health that comes to characterize the late-20th-
century body involves the popular embedding of experimental
sciences as a form of care. This is of necessity a highly instrumental
notion of care, one concerned with autonomy, performance and the
cultivation of an active, competitive self, inured from precisely the
kinds of health conditions that would involve relational care. Here
too we can see one of the great strategic advantages medicine wields
over other kinds of human science; its unparalleled capacity to trans-
late social issues and concerns into forms of viable embodiment. As
Race so beautifully demonstrates, the hydrated, running body is
readily diffused as a new norm in the 1970s because of the ways
it addresses anxieties about both the effects of sedentary work
(eventually to become today’s obesity panic) and the new compet-
itive ethos in the workplace, as unemployment soars and the econ-
omy deindustrializes. Running comes to thematize one’s
performative and disciplinary capacities, and, by implication, one’s
ambition and appetite for success, newly displayed through the
slim, fit, well-tuned physique.
Race notes that this performance-oriented self-care works as an
anchorage point and habitus for the neoliberal philosophies of the
self that were to be elaborated during the last decades of the 20th cen-
tury. Here he points towards the emergence of the entrepreneurial,
strategic subject of health now well characterized in the biopolitical
literature, the biological citizen who actively embraces the new
opportunities associated with the biomedical economy and the priva-
tization of health systems by investing in his/her body (Rose and
Novas, 2004). Again, this form of subjectification involves the ela-
boration of self-care through the informed adoption of innovation
medicine; diagnostics, preventative and enhancement pharmacology,
regenerative medicine. Again it involves the medical mediation and
embodiment of broad social change, including the privatization, seg-
mentation and de-pooling of health risk (Ericson et al., 2000), and the
changing demands of the workplace and education systems.
We can discern a quite direct relationship between the ethos of bio-
logical citizenship and new ways of conceptualizing labour, for exam-
ple, as economists accommodate the processes of de-industrialization
and growth of the service sectors and knowledge economies. This

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182 Body & Society 18(3&4)

relationship is particularly evident in human capital theory, for exam-

ple, an approach to labour economics developed by the Chicago
School during the 1960s and now in wide circulation. Human capital
economists argue that the degree of the workforce’s self-investment
(in training, education, expenditure on medical care) is a more signif-
icant way to measure productivity inputs than the simple quantitative
concept of a labour force associated with industrial models of pro-
ductivity, measured as ‘man-hours worked’ (Becker, 1993; Schultz,
1962). Its diffusion is associated with the intensification of employ-
ment competition and the enrolment of qualities once associated with
social reproduction – social networking, empathy, fashion-sense –
into new forms of labour in a de-industrialized service and innova-
tion economy (Boltanski and Chiapello, 2005). Human capital theory
is borderless and all-encompassing, able to enrol every aspect of the
self and the life course into a productive calculus and processes of
self-appreciation, including practice of fitness, preventative health,
cosmetic surgery and the general cultivation of an ‘expensive’ body
(Feher, 2009). Examined from this vantage point, the entrepreneurial
subject of health is one who enrols their body’s capacities into a
broader productive calculus, where the consumption of medical inno-
vation is not clearly distinguishable from its production, and from
other spheres of production. As Alberto Toscano suggests, in the
contemporary economy, consumers may simultaneously operate as
producers, ‘not just a passive terminus but a complicit and creative
relay’ (2007: 74).
We can see a novel iteration of these broad relations between self-
investment, entrepreneurial health, the active embrace of experimen-
tal risk as self-care and new forms of labour in Cooper’s article about
user-generated drug innovation. Drawing on the free labour strate-
gies of social media and the extreme deregulatory rhetorics of some
US health economists, patient network sites aggregate the off-label
dosing and side-effect data of thousands of people, whose self-
experimental experience is used by pharmaceutical companies as a
source of new drug and re-patent leads. What is striking here is the
ways in which the right to take pharmaceutical risks, to self-assess
the possible benefits and perils of unproven drug compounds,
becomes a form of self-care which defies the regulatory mechanisms
of state institutions designed precisely to protect citizens from preda-
tory experimentation. As Cooper demonstrates, the right to take

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Waldby 183

experimental drug risks emerges during the 1980s from the activism
of HIV/AIDS patients who, in the face of imminent death, refused to
wait for the lengthy clinical trial procedures involved in approving
new treatments. Instead, they voluntarily assumed the unknown pos-
sibilities of new compounds, both their efficacy and their toxicity, in
the hope that they or their fellow-sufferers would benefit. Today
adventurous patients participate in distributed pharmaceutical
experiments as part of a strategy of entrepreneurial self-care, displa-
cing some of the clinical labour of the conventional drug trial onto
practices which are more usually read as consumption.
The right to take risks in the pursuit of self-care is then a very con-
temporary variant of the relations between the pastoral and experi-
mental aspects of medicine. As Cooper demonstrates, some of the
impetus for this distributed form of experiment comes from the para-
digm of translational medicine, a recent model for the relationship
between experimental life science and clinical medicine, and hence
between medicine as care and medicine as experiment. Translational
medicine is concerned with the better application of in vitro science
to in vivo treatments, clinical applications that address actual health
problems. It reacts to some extent against the 20th-century life
sciences revolution’s focus on laboratory life and micro-innovation –
rDNA, stem cell lines – as both scientific rationale and business model,
concerned with intellectual property rights and proprietary systems
as ends in themselves (Waldby and Mitchell, 2006). It necessarily
involves an intensification of in vivo research, understood largely
as the improved diffusion of laboratory science into the space of the
clinic (Martin et al., 2008). As Cooper notes, this model of one-way
diffusion has been extensively critiqued, assuming as it does that
innovative laboratory techniques can be simply transported to a dif-
ferent platform, the living body. Clinical improvements are, in prac-
tice, far more complex and unpredictable and demand more
recursive relations between bench and bedside. They may involve
long-term collaboration between clinicians, ill patients willing to try
new treatments, and bench scientists willing to learn from clinical
failures. This kind of formation can be found in the development
of hematopoietic stem cell treatments for blood cancers, for exam-
ple. Initial research into the capacities of bone marrow to renew the
blood system was driven by Cold War research into the biological
effects of radiation. Catastrophic failures with clinician-initiated

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184 Body & Society 18(3&4)

bone marrow transplant to treat leukaemias (graft v. host disease)

drove basic immunology research into HLA (Human Leukoctye
Antigens) matching, and then clinicians made incremental therapeu-
tic refinements to fine-tune patient treatment and develop the stan-
dardized protocols available today. In the process further bench
research into surface antigens gradually transformed the identity
of bone marrow into hematopoietic stem cells by the 1990s, posi-
tioning them to inherit the larger claims for stem cell research which
were to be made by the end of the decade (Martin et al., 2008). This
kind of tinkering and clinic/laboratory exchange is also evident in
the contemporary cardiac stem cell field, where very ill patients
volunteer for experimental treatments, which then produce data on
stem cell engraftment and diffusion that inform further laboratory
research (Webster et al., 2011). As Raval and colleagues put it, in
the field of stem cell research:

[t]he tradition of careful progression from ‘bench to bedside’ is shift-

ing to a pattern of rapid translation from basic research to clinical
trials, with observations from trials looping back for re-evaluation
at the preclinical level for retesting and optimization. (2008: 594)

While translational medicine can be read as a paradigm concerned to

improve medicine’s capacity to alleviate suffering, its drive to
develop novel therapies also depends on a particular kind of sacrifi-
cial order, where both experimental human subjects and experimen-
tal animals are systematically exposed to unknown risks. The
protocols of pharmaceutical and medical device research require that
any new treatment be tested through a series of staged trials. This
begins with pre-clinical studies, using animals as surrogates for
human bodies, as both Gail Davis and Lynda Birke discuss in their
respective articles in this volume. They progress through stage one
trials that test the treatment candidate for toxicity, using healthy
research subjects, to stage two which tests for both safety and effi-
cacy among patients suffering from the target disorder, stage three
which tests across a larger group of patients and, finally, stage four,
which involves post-marketing surveillance once the treatment is in
the field. Stage two and three trials are ideally double blind. Neither
patients nor clinicians know if any given subject is being given the
new treatment or a placebo until the trial is complete. They hence

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Waldby 185

represent the point where the tension between medicine as care and
medicine as experiment is at its most taut. This tension is exacerbated
by the increasing recourse of uninsured patients in the United States
and many developing nations to clinical trials as a form of contingent
and time-limited care (Cooper, 2008).
Pre-clinical and stage one trials are, however, strictly concerned
with the establishment of experimental risk, toxicity and initial
evidence of efficacy, and exclude all questions of care from their hor-
izon, although this is not to suggest that they proceed without regard
to the welfare of their subjects. Rather it is to acknowledge that the
development of scientific forms of clinical care and safe pharmacol-
ogy rest on a prior systematic exposure and transformation of certain
animal and human bodies in order to produce safety and efficacy for
others. As Cooper (2011) demonstrates elsewhere, this sacrificial
relation has a considerable history. It can be discerned in the opera-
tion of the national health systems that underpinned the mid-20th-
century welfare state, as institutionalized subjects (prisoners, mental
health patients, orphans, infantry) were used to establish the clinical
safety data necessary to develop mass forms of health care. However,
the current moment of translational medicine, with its focus on in
vivo innovation, has expanded the demand for human experimental
subjects, and the pharmaceutical industry, no longer able to access
institutional test conditions, has developed more transactional ways
to recruit. Stage one trials are more and more likely to be organized
as clinical labour, closely resembling other kinds of casualized ser-
vice work and drawing on the uninsured and unemployed, the precar-
iat of de-industrialization. Clinical labour differs from other kinds of
service work, however, in that the labour process is concerned purely
with the endurance of risk and experimental accidents, while in most
other kinds of work, risk and accident are regrettable side effects of
other forms of production. As recruitment for trials has become more
transactional, it has also been off-shored, as clinical research organi-
zations (CROs) identify cheaper and more amenable sources of
experimental endurance outside the more protected (and over-medi-
cated) populations of North America and Europe (Cooper and
Waldby, fothcoming).
Translational medicine also ramps up demand for pre-clinical,
animal bodies, to act as in vivo experimental sites prior to first in-
human studies. As Birke indicates, animal models are standardized

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186 Body & Society 18(3&4)

surrogates for human disease states, and extensively condition how

medicine understands the human body. In many cases, the use of
animals involves their literal ‘sacrifice’, the term used within the
laboratory itself to describe the euthanasia necessary to obtain the
sought-for result (Lynch, 1988). In Bruno Latour’s memorable
words: ‘bleeding and screaming rats are quickly dispatched. What
are extracted from them is a tiny set of figures’ (1990: 39). Gail
Davies presents us with a more ethically ambiguous scenario in her
account of humanized mice. Here mice are biotechnically altered to
render them more satisfactory translational objects, by humanizing
their physiology. Davies notes that this translational strategy is habi-
tually described in the most literal terms. Humanized mice are under-
stood as a decoding device, rendering sapiens and murine biological
languages into mutually intelligible terms. In the cases Davies
explores this involves the exchange of immune systems. They are
born immuno-incompetent, without functioning immune systems
of their own, and then transplanted with human hematopoietic stem
cells, which can grow the entire blood system, including its immunity
components. Unlike knock-in mice,2 that might include a generic
human breast-cancer gene to facilitate pre-clinical breast-cancer
research for example, humanized mice sport the immune system of
a particular person, the stem cell donor, because immune systems are
by definition highly personal entities. In this situation, a sick patient
and a laboratory mouse might find themselves in a quite unprece-
dented relation, where the clinical treatment proposed for the patient
is ‘run’ in real time in the mouse. To put it another way, the patient
might be spared some of the unknowns of a novel treatment because
the mouse assumes the living experimental burden of translational
medicine, allowing clinical delivery to be tweaked and finessed before
it is administered. Here the mouse’s value as an experimental system is
not so much realized by its sacrifice but rather by its humanized clin-
ical response. As Davies notes, this is not yet a use for humanized
mice, but as treatments are more tailored through diagnostics and the
panoply of personalized medicine, such a use may not be far away.
Neilson’s analysis of ageing as experience and its relations to
ageing medicine, and Pfingst and Rosengarten’s analysis of medicine
under conditions of Occupation, raises the question of the limits of
care, and, in particular, what happens when states abrogate their obli-
gations to protect vulnerable populations. In these two cases we are

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Waldby 187

confronted with the irreducible precarity of human life and the vul-
nerable body, its exposure to the contingencies of loss, ageing and
weakness, its openness to accident and death (Butler, 2004). The age-
ing and the wounded present instances where relational care is essen-
tial to sustain life, yet relational care is withheld, in one case brutally,
in order to traumatize, in the other as a measure to encourage private
self-care rather than social care. In both instances, the withholding of
care is a state strategy. The case of Israeli refusal of even the most
basic forms of emergency care, or the exchange of emergency care
for information, is continuous with a military strategy that maxi-
mizes the precarity and exposure of Palestinians who live under
occupation. Here the immobilization of the ambulance is emble-
matic of the ways care is withheld. The ambulance is, historically
speaking, a military artefact, originally a field hospital and means
of evacuation for the great masses of wounded in the Napoleonic
campaigns (Haller, 1992). The changing conditions of war and the
increase in casualties through the 19th century eventually
decoupled field care from military strategy with the formation of
the International Red Cross Society and later the Red Crescent
Society. The military neutrality of the ambulance is enshrined in
the first iteration of the Geneva Convention (1864), which recog-
nizes the non-combatant status of both the wounded and field clin-
icians. The Convention sets out the obligation on the belligerents
to give the ambulance safe passage through combat zones. Since
then the ambulance has had, theoretically, a privileged mobility
under conditions of siege, delivering succour to the wounded and
dispatching them to safer ground and hospital conditions. In this
sense, the ambulance administers a non-aligned, humanitarian care
that does not distinguish between differently valued lives. The
Israeli military Occupation, however, aims to render the lives of
those in the OPT unlivable, reducing them to derelict, bare life that
is without value and beyond the reach of humanitarian care. Baf-
fling the ambulance, disabling its time-critical emergency response,
delaying and prevaricating over its right to traverse endlessly mul-
tiplied checkpoints and borders, effectively renders withheld care
into another form of military violence.
In the case of ageing populations in the developed democratic
nations, states and health administrations try to limit their responsi-
bilities for aged care through the ‘compression of morbidity’, the

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188 Body & Society 18(3&4)

contraction of disabling illness to the shortest possible period prior to

death. Here we can see the extension of the demands associated with
entrepreneurial self-care to the very end of the life course. As Neilson
demonstrates, the compression of morbidity as a biopolitical aim
draws on both the most practical forms of clinical attention and the
outer reaches of innovation science. While geriatric medicine assists
with the biomechanics of everyday living with an ageing body, stem
cell research and regenerative medicine identifies self-renewing pos-
sibilities in the ageing body itself, the latent reserves of stem cells
identified in olfactory tissues or induced pluripotency in skin cells,
for example. Alternatively, human embryonic stem cell research
seeks forms of renewal in donated reproductive tissues, redistributing
the self-generating capacities of embryonic life to those who suffer
from the degenerative diseases of ageing (Gottweis et al., 2009).
Regenerative medicine promises to treat and even reverse the dis-
eases of ageing, and the ageing process itself, as it is more and more
widely conceived as a kind of pathological degeneration. Neverthe-
less, regenerative medicine clinical applications are still scarce and
highly speculative,3 and those wishing to prolong healthy life and
a capacity for self-care have little recourse other than the standard
chronic disease medications (Lipitor, etc.) or highly commercialized
anti-ageing regimes involving doubtful hormone supplements and
alarming cosmetic surgery.
So the compression of morbidity remains largely an aspiration of
various administrations struggling to come to terms with the demo-
graphic shifts in the proportion of the young and working to the older
and retired. Nevertheless, relational care itself is becoming increas-
ingly scarce, at least care provided by national health and welfare
systems, where it is increasingly regarded as an excessive drain on
public finance. Moreover, the burden of care for others that once fell
to the subsidized housewife in the Fordist household is being steadily
shifted onto feminized labour markets, as professional women seek
other, less credentialled women to undertake household care as a
form of employment. The demand for this feminized care work is
such that it drives the mass migration of women from one national
location to another. Impoverished women recast their feminine capa-
cities for nurturance, affective and body care, maternity and sexuality
as negotiable assets, able to be traded for money in countries where
they can find employment as maids and nannies, as cleaners and as

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Waldby 189

household carers for the aged (Sassen, 2002). It is here that the rela-
tional care necessary for ageing or disabled life can be most readily
found, either in a professionalized form (nursing) or through more
informalized arrangements. What Neilson demonstrates in his article
is the ironic relationship between this most corporeal, dependent,
intimate kind of care, so necessary at the end of life, and the entrepre-
neurial, self-actualizing subject of experimental ageing medicine,
who can renew themselves indefinitely without reference to others.
So we can see in these articles that, in one of its aspects, medicine
persistently elaborates norms that set out social dynamics in the
terms of desirable embodiment. This capacity confers medicine with
an irresistible appeal, because it gives individuals a certain kind of
agency over what may otherwise seem intractable historical problems,
a way to work on the self, as Nikolas Rose (2007) put it, that confers a
measure of control, hope and care. These norms are more and more
likely to emerge from the innovation processes of medicine, as the life
sciences imaginary is diffused through popular culture and translated
into biomedical business models as well as clinical treatments. At the
same time, norms can never be entirely embedded as living forms, and
the constitutive vulnerability of being embodied and relational beings
makes other kinds of demands on the medical ethos – as a form of
caritas and hospitality that administers to precarious life.

Notes
1. For a useful overview of these relations see Sturdy (2011).
2. Genetically engineered mice, with the addition of human or other
non-mouse genes.
3. In 2011, 112 RM companies were operating in Europe, for exam-
ple, with 65 cell therapies in clinical use or development. The
majority of those in clinical use were autologous (using patients’
own cells), and involved treatments for stroke, macular degenera-
tion, Crohn’s disease, skin grafting and cartilage replacement.
A much higher proportion of therapies in development were
allogenic stem cell based treatments. See Webster (2011).

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Regenerative Labour: The Female Body and the Stem Cell Indus-
tries’, Feminist Theory 11(1): 3–22.
Waldby, C. and R. Mitchell (2006) Tissue Economies: Blood, Organs
and Cell Lines in Late Capitalism. Durham, NC: Duke University
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Webster, A. (2011) Regenerative Medicine in Europe: Emerging
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Author biography
Catherine Waldby is Professorial Future Fellow in the Department of
Sociology and Social Policy, Sydney University, and Visiting Professor
at the Centre for Biomedicine and Society, Brunel University, London. She
researches and publishes in social studies of biomedicine and the life

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sciences. She is the author of five research monographs, four edited collec-
tions and over fifty articles in the field. Her most recent books include Tis-
sue Economies: Blood, Organs and Cell Lines in Late Capitalism (Duke
University Press, 2006, with Rob Mitchell), The Global Politics of Human
Embryonic Stem Cell Science: Regenerative Medicine in Transition
(Palgrave, 2009, with Herbert Gottweis and Brian Salter) and Clinical
Labour: Tissue Donors and Research Subjects in the Global Bioeconomy
(Duke University Press, with Melinda Cooper, forthcoming). She is the
director of the Biopolitics of Science research network and a Fellow of the
Academy of Social Sciences in Australia. She has received national and
international research grants for her work on embryonic stem cells, oocytes,
blood donation and biobanking.

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