Data Intimacies: Caring for Data in Sweden

Abstract:
As international attention turns to the potential of big data in biomedicine and behavioral sciences, Sweden has invested considerable resources in leveraging the economic, social, and political value of its informational treasuries. Sweden is well known globally for the scale and scope of its national databases. Given these far-reaching data collection practices, some observers have labeled Sweden as a model surveillance state. However, citizens have demonstrated a high degree of trust in authorities and researchers to appropriately manage personal information. In turn, officials and scientists have worked to ensure that national data is used to enhance the well-being of the population. This political framework often operates in combination with a moral imperative, as researchers and authorities work to "protect the data," thus enacting their visions of both good science and the good society. Drawing on ethnographic fieldwork with Swedish researchers and data managers, I offer a critical perspective on public engagement with the registration of personal information through the lens of the intimate relation between the individual and state in Sweden. Through an analysis of two major scientific controversies in Sweden, I examine what happens when the trust breaks down, and argue that data protection policy can be better informed by situating privacy within specific social relations.

Bio:
Alison Cool is an assistant professor in the Department of Anthropology at CU Boulder. Her research interests include the anthropology of Scandinavia; anthropology of science, medicine, and technology; science policy; expertise; economics; life sciences; twin studies; global data circulation; and cultural understandings of privacy and surveillance.