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RN24_01a_P: Health, Bio-Medicine & Social Context I
2:00pm - 3:30pm
Session Chair: Bernhard Wieser, Alpen Adria University
Location:PC.4.26 PANTEION University of Social & Political Sciences
136 Syggrou Avenue
17671 Athens, Greece
Building: C, Level: 4.
Populations as brands - science and technology in the construction of identities
University of Copenhagen, Denmark
The collection, use and distribution of human tissue samples have stressed the new pathways in which human body parts and related information are becoming productive. This presentation probes the question of how the concept of branding can elucidate the way historico-cultural narratives of origin and authenticity are coming to play an increasingly important role in leveraging populations as new types of scientific products. Using the notions of heritage and identity, geolocation, and scientific recognition, I argue that the branding of populations represents, not just novel ways of creating difference, but also provides new ways in which master narratives of population history are created. The processes by which genetic specificities of various populations and their concomitant samples are made productive vary, yet illustrate how narratives of genetics, national identity, group identity, and uniqueness in the medical sciences become intertwined with notions of productivity and bioeconomic potential.
The creation and development of national population biobanks in Estonia and Iceland: a field-theoretical analysis.
University of Tartu, Estonia
Initiated in late 1990s with the aim to explore interactions between genes and environment, population biobanks fuelled media attention in the most controversial part of genetic research: while within genetics, the trend since the late 20th century has been towards growing acknowledgement of the complexity of genes and the multifaceted relations between genes and environment, the public discourse has often been using the language of genetic causation. The sociological analysis of the phenomenon has been dominated by the Foucauldian perspective warning of the prospect of the geneticisation of social problems, naturalisation of inequality, etc. Alternatively, this paper takes a Bourdieusian perspective and argues that the public discourse of genetic causation should not be viewed in such a totalising way but rather as a strategic tool used by geneticist to gain symbolic capital in the context of the growing dependence of the scientific field on economic and political fields. The paper, based on the analysis of the cases of Icelandic and Estonian biobanks, discusses how these, in their search for public and economic recognition, were bound to strategically engage in this controversial public discussion. Biobanks as scientific projects are especially dependent on external field: their creation and upkeep requires a huge financial investment; the recruitment of a large group of sample donors requires high level of popular support and mobilisation.
Secondly, the paper discusses how the subsequent developments of the biobanks epitomize the insoluble differences between the logics of economic and scientific fields. Neither of the initiatives, planned as public-private cooperations, has maintained its initial ambitious goals, both have had to make a transition into more habitual (though very different) institutional arrangements in the biotechnological field.
Big data and public healthcare: resisting new economic subjectifications of exclusion
Paraskevas Vezyridis, Stephen Timmons
University of Nottingham, United Kingdom
Since the economic crisis of 2007-08, a growing global economic literature promotes the role of the State as the decisive broker of population datasets for new innovation ecosystems to sustain economic growth. In healthcare, the fight against the (economic burden of) disease and the responsibilisation of health management, amid the reduction of the welfare state, have expedited the development of national technological infrastructures for big data analytics.
This paper examines socio-technical and ethical challenges around care.data: a failed primary care programme by NHS England aiming at developing a central database of complete patient journeys for various secondary analyses. Based on ethnographic interviews with health data researchers, General Practitioners and citizens who resisted this database, we argue that a new social contract is drawn up for the commercialisation of public health data.
Understanding these state initiatives as mass surveillance programmes, patients resisted normative assumptions of size and speed towards conscribed data sharing practices. Contrary to a morality of ambiguous overriding public and science interests, they mobilised a morality of egalitarian access to public health services. Rejecting extensive institutional discretionary appropriation of data use rights, they called for more distributed forms of big data ethics so as to steer research, innovation and economic exploitation away from marketisation and the dismantling of the national health service.
As the healthcare, research, business and surveillance models are becoming synonymous, we need to discuss what kind of research, service improvement and generally economic growth out of this public good is beneficial for society as a whole.
Expectations and impatience: A study of a policy mood
Heta Tarkkala1, Ilpo Helén2
1University of Eastern Finland, Finland; 2University of Eastern Finland, Finland
Across Europe, innovation policy is saturated with enthusiasm about big data. Our presentation examines a political preoccupation with digital databases and big data in the domain of health care in Finland. Finnish public health care databases and biobanks are seen to already contain big data and to offer a huge potential to make Finland a ‘test bed’ for medical genomics and personalized medicine. For past few years, national innovation strategies have highlighted visions of data-driven biomedical research and health care and focused on rearrangements to make the Finnish big health data available for ‘global’ research & development work. In the visions of innovation policy, utilization of big health data stored in public databases and biobanks will enhance scientific and, in particular, commercial competitiveness of Finland.
We analyze emerging impatience in innovation policy focused on health databases and health-related big data. Advocates of innovation in biomedical research and business encourage health sector stakeholders to move fast in making their health data more easily available and accessible. This political preoccupation spreads a mood of impatience among the actors and stakeholders who run biobanks, health care institutions and public databases and who actually plan and carry out technical and political reforms in health data management. In our paper, we point out sources and a rationale that create impatience in innovation policy, and we discuss about consequences of such a policy mood. Does impatience foster or hinder efforts to make Finland an international success story of data-driven medical genomics and personalized medicine?