Categories of Diversity in Precision Medicine and Epidemiology – Contrasting Germany and the US

• In Event: Global Imaginaries of Precision Science 1: Diversity, Inclusion and Justice

Abstract

The proposed paper explores how the quest for greater inclusion and diversity of historically underrepresented groups in precision medicine research is implemented differently in different national contexts. Drawing on fieldwork in Germany, it will especially focus on the differences between clinical/epidemiological research and health politics in the US and Germany: in the US, political efforts to even out racial/ethnic (and gender) health inequalities have e.g. led to the inclusion of “all relevant groups” in clinical and epidemiological studies, with the underlying notion that these social identities correspond to relatively distinct kinds of biological bodies (Epstein). The US “All of Us” Research Program is an example for such tendencies, when looking for links between disease and ethnic/population genetic variation.
In Germany, a renaissance of medical and epidemiological (and other life science) research into human diversity is only in the beginning, but an emerging field. But different from the US and partly because of the NS history, we find an “absent presence” of race (M’charek et al): instead of ‘race’ or ‘ethnicity’, categories that seem less politically problematic are used, such as "Migrationshintergrund" (migrant background), that still imply aspects of race. How are precision medicine diversity knowledge and practices produced in these nationally diverse ways?

Authors

• Andrea zur Nieden, Institute of Sociology, University of Freiburg, Germany

• Isabelle Bartram, Institut of Sociology, University of Freiburg, Germany