HUGERA · Human Genomics without Racism

How can we study human genomics without racism? This project will develop an empirically informed philosophical framework to answer this question. The project aims to produce a systematic diagnosis of how racism can influence human genomics research, identifying the types of harm that unfold from it but might have been overlooked by scientists. Human Genomics promises to reveal who we are and revolutionize medical diagnosis and treatment. However, geneticists and social scientists are increasingly worried that genomics research might involve racist assumptions, unknowingly harming vulnerable populations. It is key to assess how racism might co-opt Human Genomics and how harmful it is, but key knowledge gaps persist. For instance, discussions about racism in Human Genomics are rarely grounded on theories of racism. These discussions focus on parts of the research ecosystem (e.g., data collection) and don’t consider how racism can influence the whole knowledge production process. The project aims to fill this knowledge gap by combining the conceptual apparatus developed by philosophers of science and race with empirical, qualitative methods from the social sciences. First, we develop an epistemological account of two key methodologies in human genomics research, characterizing how data, models, theories, and experiments interrelate to generate genetic knowledge. Second, we conduct a multidisciplinary literature review and interviews to identify potential racist assumptions in those methodologies of human genomics research, analysing them in light of theories of racism. Third, we examine the role of those assumptions in the generation of genetic knowledge, identifying the types of epistemic injustice that follow from it and how they are overlooked by scientists. Our results will help scientists identify aspects of genetic research that require ethical attention to avoid racism.