The Unique and the Universal: Analyzing the Interplay Between Regulatory Frameworks, Researchers and Research Participants in Data Making

Abstract

Contemporary health research is becoming increasingly data intensive with a dependency on more data, of different types, and on more people. Multiple measures are therefore taken to ensure a variety of data, for example by re-appropriating data collected for purposes other than research. In genetic research, there is a general aim of more personalized diagnostics and treatments. Personalization in many ways depends on access to a universal data pool to gain statistical strength when identifying rare variants affecting unique individuals. If the aim of identifying the unique depends on access to the universal, how are we then to understand the dialectic between these two concepts? Further, if data-intensive research thrives on repurposing data, how does the repurposing affect the interests of the people from whom the data derive? In this article, we explore these questions by comparing two Danish initiatives aimed at making more data available for research through repurposing: one from a screening program of newborns at the beginning of life; and the other through an educational program collecting bodies after death. They both involve reinventing the original collection practices and they illustrate how regulatory frameworks, researchers and research participants reason differently about what can be considered as unique and as universal, as well as the risks and benefits involved in participating in data-intensive research.