Lost along the way? Searching for the inclusion-and-difference paradigm in pharmaceutical research and regulation in sweden
This article examines how the U.S. ‘inclusion-and-difference paradigm’ translates to the Swedish context. According to Steven Epstein (2007), this paradigm combines health equity arguments for racialised minorities and women with a biological understanding of racial and gender differences in medicine. Drawing on interviews with experts, policymakers, and clinicians involved in international clinical trials in Sweden, we argue that critical elements of the U.S. paradigm – notably the ‘categorical alignment’ of race-and-ethnicity taxonomies between the social worlds of medicine, government bureaucracy, and political discourse – are absent in Sweden and, more generally, Europe. Consequently, there is no coherent framework for interpreting the existing ‘niche standardisation’ of certain medicines based on race and ethnicity, such as racialised treatment recommendations. In conclusion, we discuss possible future scenarios and highlight a recent collaboration between the pharmaceutical industry and EU institutions. Despite the challenging context, this collaboration aims to establish a European standard for race and ethnicity data in clinical trials. However, we argue that such attempts warrant caution: with racism being so widespread in contemporary Europe, emphasising racial differences in medicine may unintentionally reinscribe harmful notions of race.