Data Power Conference

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Panel Session 3d): Healthcare Data and Expertise (Chair: José van Dijck)

 

Privacy Without Guarantees: Healthcare and Genomics in the age of Big Data

Julie Frizzo-Barker and Peter Chow-White, Simon Fraser University

Big data technologies have transformed the complex whole genome sequencing process from a multi-billion-dollar, decade-long race to a relatively affordable service that costs close to $1000 and takes about a week. As patients are translated into petabytes of digital data, our shifting sociotechnical landscape is characterized by new opportunities for medical breakthroughs, the emergence of “personalized medicine,” as well as new informational risks to privacy. Genomic big data is disruptive to some of our most fundamental social categories: human and digital, in vitro and in silico, the bench and the bedside. This creates new challenges for the public, practitioners, and policymakers in terms of managing a new type of personal information in the healthcare system.

As scholars of the social studies of science and technology have shown, when a new technology moves from a small group of expert users into a broader context, in this case a population-wide health care system, new issues and practices arise. We analyze the socio-cultural implications of “privacy without guarantees” at the intersection of healthcare and genomic data regulation in Canada. Our particular site of investigation is a genomic test for cancer treatment currently under development. We have conducted documentary and policy analysis, as well as interviews with active genome researchers, privacy commissioners, and decision-makers in the province of British Columbia, area to explore the issues of informed consent, return of results and incidental findings at the point of care. Our resulting recommendations for managing privacy synthesize our empirical findings in conjunction with related international guidelines.

 

Towards a View of Health Expertise as Collective Imagining: Self-Tracking and the Co-Construction of Interiority and Externality in a Finnish Health Care Organization

Nina Honkela, Eeva Berglund and Minna Ruckenstein, University of Helsinki

One of the core challenges of current health care is to find new ways to address the burgeoning rise of health care costs of an ever aging Western population. As part of a new preventive health and wellbeing paradigm, personal analytics or self-tracking is increasingly presented as a cost-effective means to reach this end. Self-tracking provides alternative practices for visually and temporally documenting, retrieving, communicating and understanding physical and mental processes. Yet reports abound on the unease of health care professionals with data that originates outside the system; the data are not seen as evidence, or even trustworthy. Thus a distressing dilemma emerges where the responsibility for taking preventive action rests on the epistemically most fragile and powerless, in the realm of “subjective” and ultimately interior values so objected to by the medical/clinical gaze. Drawing on the idea of “collective imaginings” outlined by Moira Gatens and Genevieve Lloyd, we propose an escape from this epistemic Catch 22. Contrary to the view of expert knowledge as objective and disengaged, the notion of “collective imaginings” accounts for the transformative power of human thought by bringing in the material, affective and collective aspects of imagination. By using our empirical work on the difficulties encountered by the self-tracking apps MealTracker and Emotion Tracker in a Finnish health care organization, we show how such collective imaginings already inform expert practice; how this enables multiple points of contact across different registers of knowing; and how it enables the co-construction of interiority and externality in health care.

 

Responsible Innovation in Big Data Systems

Sabine Thuermel, Technische Universitat Munchen, Munich, Germany

The deployment of Big Data technologies forms an integral part of the latest generation in complex adaptive systems. Big Data approaches may be employed for the optimization of individual behaviour based on Big Personal Data or the optimization of the behaviour of a social system relying on Big Social Data. Customary distributed health monitoring systems report on the patients’ vital parameters and let the doctors directly interact with the patients if needed. In future proactive health and wellbeing systems data mining and predictive analysis will be included. Thus governance will already be embedded in these systems. Such social engineering intends to foster auto-adaption on the individual and on the system level. It nudges the users towards social conformity. It results in the paradox of participation and the paradox of autonomy: On the one hand Big Data based systems provide the participants with novel forms of self-knowledge and new ways of self-optimization. On the other hand the governance embedded in these systems restricts the autonomy of the participants and imposes an opaque guidance. Data power is exercised. Thus a responsible innovation process guiding the modelling and employment of such systems is essential. The presentation will outline how such a responsible social engineering approach in the field of proactive health systems could look like. A framework for responsible innovation will be presented focusing specifically on challenges caused by Big Data.

 

Tracking Productive Subjects: Corporate Wellness Programmes, Self-Tracking and Control Through Data

Chris Till, Leeds Beckett

This paper will explore the relationship between corporate interests and practices of digital self-tracking (DST) of health and exercise through an analysis of corporate wellness programmes through which companies seek to improve the health of employees. The ways in which data enable the control of bodies in relation to strategies which aim towards increasing productivity will be explored. It will be argued that value is generated through the transformation of heterogeneous exercise activities of users into digitised, standardised, comparable and accumulable data. The source of this value can be seen in the generation of commercially valuable data and the biopolitical control of workers. DST has recently become more widespread and it has been suggested that it promotes a neoliberal entrepreneurialism (Lupton, 2013), that commercially valuable user data are being extracted (Till, 2014), that it is being used to monitor and increase the productivity of workers (Moore, 2014) and used for public health interventions (Breton, et al, 2011). The individual and corporate management of health through DSTs has come together in their use in corporate wellness initiatives which conflate the health, fitness and wellbeing of individuals with the productivity and profitability of the company. Preliminary findings from interviews with managers involved in the application of such initiatives, and a discourse analysis of related literature, will be presented. This will unpick their rationales for implementation, the relations drawn between health and corporate interests, their cause and effect relations and the subjectification processes enabled through particular arrangements of humans and technologies (Ruppert, 2011).