Programme full

Science and Technology Studies
W525, HAMISH WOOD BUILDING
Thursday 16 April 2015 13:30 - 15:00
PAPER SESSION 5
CARE / AFFECT
Phantom Data: Coercive Consent, Patient Privacy and Big Data
Ebeling, M.
(Drexel University)
Phantom Data examines the trend of heath marketing's wholesale collection of patients' health data and the selling of
patient information within the American healthcare industry. Ostensibly protected as private data under the U.S.
Health Insurance Portability and Accountability Act (HIPAA), Protected Health Information (PHI), a class of patient
data given extra privacy protection, become a commodity bought and sold by data brokers and database marketers.
This data is often shared and mined without patients' or even doctors' knowledge or consent, with data brokers and
marketers.
This paper considers what patient privacy and informed consent means in the Big Data Age, by tracing the often
entangled and fraught social practices of patient consent in regards to private data within clinical settings.
Consideration to what kinds of "data-images," "data-objects" and "data-marketing-diagnoses" are being constructed
about patients out of this protected class of data is made in this paper.
The paper considers the institutional violence inherent in the asymmetry of power between patients (and even health
care providers) and big data, and suggests that consent is impossible in the big data era (Graeber 2012). The paper
will discuss coercive consent and privacy, how diagnoses are constructed out of marketing data, and how, in the age
of "big data," this protected class of personal health information leaks out and takes on a life of its own as a discreet
commodity, that is bought and sold for health and medical marketing. Following Marx and Benjamin, the phantom
commodity is reconsidered in the Big Data Age.
Care as Control: Instrumental Love and Laboratory Beagles
Giraud, E., Hollin, G.
(Keele University)
Recent research has argued that emotion does (e.g. Pickersgill, 2012) and should (e.g. Silverman, 2012) play a
central role within scientific knowledge production. Within animal research, emotional relationships between individual
researchers and nonhuman research subjects, for example, have been cited as a means of countering asymmetrical
power relations in laboratory contexts, providing the foundation for crafting complex, co-shaped ethical relations
(Haraway, 2008; Despret, 2004, 2013). These approaches foreground somatic relationships between the actors
involved in research and challenge instrumental approaches to knowledge-production, in order to expose tensions
within the formal ethical frameworks that legitimise these approaches (Greenhough and Roe, 2011).
This paper problematizes such valorizations of 'love' through analysing work taking place at the first large-scale
experimental beagle colony at University of California, Davis (1951-1986). This case-study illustrates how beagles
came to be positioned at the centre of the animal research laboratory, in part, because their 'merry disposition' made
them amenable to forming relations with researchers. It also demonstrates how caring relations between beagles and
researchers gave the animals a degree of agency in shaping their research environment to better suit their needs.
Ultimately, however, caring practices were designed to further the ends of the experiments and make the animals
easier to control. The case-study thus complicates existing claims about the ethical and epistemic importance of care,
by foregrounding its potential to enable – rather than oppose – instrumentalization.
I, Carebot: RRI and Robotic Companions for the Elderly
de Saille, S.
(University of Sheffield)
The EU has offered seven Societal Challenges in its programme for Horizon 2020, one of which is 'Health,
Demographic Change, and Wellbeing' interpreting longer life as a largely economic problem -- to the extent that it has
sometimes been called the 'grand challenge of sustainable welfare' (RCC Manifesto,
http://www.robotcompanions.eu/). One answer to the question of care and companionship for the projected 1.5 billion
elderly by 2050 has been the development of machines to provide some, or perhaps even all, of the functions
presently supplied by non-family carers.
187 BSA Annual Conference 2015
Glasgow Caledonian University