Accepted Paper:

What is data good for?: Accountability in data governance and data practice in Sweden  

Author:

Alison Cool (University of Colorado, Boulder)

Paper short abstract:

Drawing on ethnographic fieldwork with researchers, statisticians, and data managers working with biomedical data in Sweden, this paper examines the intersections and tensions between accountability as it is invoked through data governance ideals and as it informs users’ day-to-day data practices.

Paper long abstract:

This paper explores accountability as an everyday concern in biomedical data practices. From a data governance perspective, accountability often entails assessing the potential of new forms of data collection and analysis to advance biomedical research, inform public health policy, and drive innovation and growth in local and national economies. The perceived potential of collecting and analyzing data is then weighed against ongoing concerns about security, privacy, and property—a complex form of accounting in which future yields are measured against current risks. Yet for data users—researchers, statisticians, and data managers—accountability takes different forms as it emerges in everyday sociotechnical calculations and interactions. While legal frameworks and formal ethical guidelines inform data users' decisions about how and why to amass and interpret data, they are by no means the only or primary means by which data users constitute themselves as accountable subjects. Ideas about efficiency and pragmatism and moral values about what counts as good science, good health, and the social good also motivate data users' day-to-day choices about what data to collect and its appropriate uses. Drawing on ethnographic fieldwork with researchers, statisticians, and data managers working with biomedical data in Sweden, this paper will examine the intersections and tensions between accountability as it is invoked through data governance ideals and as it informs users' day-to-day data practices.

Panel T137
From person to population and back: exploring accountability in public health