The Ethics and Politics of Infrastructures: Creating the Conditions of Possibility for Big Data in Medicine

Abstract

The vision of creating a more comprehensive understanding of human health and disease calls for collecting ever-greater volumes of information about individuals, in continuous, real-time streams, and from sources outside of the clinic. Such data is heterogenous and high-dimensional, requiring the use of big data analytics. Big data has been granted considerable perceived authority to solve problems in healthcare and biomedicine. At the same time, there is potential for tremendous impact on social and political life more broadly. For this reason, it is important to elucidate less-visible ethical issues related to the infrastructures being built to support big data projects in biomedical science and clinical medicine. The constellation of changes in laws, institutional arrangements, and new forms of expertise being brought together are reordering relations among patients, clinical and family caregivers, researchers and payers, with potentially long-term effects. For example, conventional concepts of autonomy are challenged when data is collected ubiquitously and passively, and notions of expertise are provoked when ‘non-medical’ experts (including patients themselves) participate more directly in processes of defining health, illness, and care. In the process, the distinction between research and clinical activities (which have been conceptually kept apart for decades) becomes blurred, and the definition of ‘research subject’ is confounded.