Umeå universitets logga

 Society is transforming due to changes in demographics, the environment, and technology, and thus faces multiple challenges. In this context, data coordination and access, collectively referred to as the digital transformation, are key to addressing anticipated societal tensions.

This interview-based qualitative study focuses on how researchers responsible for large-scale population-based research infrastructure view the opportunities and dilemmas in play in the intersection between data and personal privacy. The objective is to look beyond the glossy formulations of official strategy documents to see how the digital transformation (more specifically, data-driven research) is perceived from the active researcher’s point of view, and what the intellectual negotiation process is like. What is of interest here is how the accessibility of register data is legitimized, and what developments and significant changes are simultaneously taking place. The research questions are:

1) How does the research community acknowledge the tensions and dilemmas between the possible risks and harms of large-scale, data-driven, population-based research, and its potential benefits?

2) How are the accessibility and coordination of research data justified and discussed by the research community, given the risks and potential, in relation to political and societal goals and policies?

With the contemporary Swedish research context as a point of departure, these research questions are addressed based on policy documents about digitalization, and on interviews with researchers.