Whole genome, part population: Protection, representation and postcolonial politics in precision medicine

How do researchers and clinicians assemble a rare diabetes population and navigate challenges of inclusion and exclusion built into the vision of precision medicine? Precision medicine envisions tailoring diagnoses and targeting treatment to the individual patients based on primarily genetic data. In this article, researchers across the disciplines of health and social science and across Denmark and Kalaallit Nunaat (Greenland) write together about how the multiple situational ethics operate simultaneously in the field of precision medicine and rare diseases. Based on ethnographic fieldwork in a large-scale Danish genomic research project called TRANSLATE in Denmark, this paper contributes with much needed knowledge of the day-to-day moral navigation of the intersections of protection and representation “on the ground” in precision medicine research. First, we explore the ethical concerns experienced in recruitment work in the Danish clinics and second, the particular ethical concerns arising when genetic researchers seek to include Greenlandic patients in their study population. We show that in the process of including and excluding patients, the researchers and clinicians come to feel stretched out between historical shadows of medical malpractice and colonial power and present day attempts to enhance public health. We end with a discussion of possible ways forward in the complex landscape of genomic data politics pointing to the possibilities as well as the limits of citizen engagement and collaborative approaches to data governance.