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Human Genomics without Racism

Project description

Exploring racial bias in genomics research

Human genomics promises breakthroughs in understanding health, identity and disease. However, researchers are increasingly concerned that racial biases might unknowingly shape genomics research, leading to harmful assumptions and misinterpretations. These biases can affect vulnerable groups, potentially deepening health disparities rather than decreasing them. Yet, discussions on racism in genomics often lack a strong theoretical foundation, leaving many questions unanswered. In this context, the ERC-funded HUGERA project aims to address this issue by creating a philosophical and empirical framework to identify and prevent racial biases in genomics research. By analysing how research methods and assumptions may embed racism, HUGERA will help scientists spot ethical issues and conduct research that benefits everyone.

Objective

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.

Fields of science (EuroSciVoc)

Keywords

Programme(s)

Topic(s)

Funding Scheme

HORIZON-ERC - HORIZON ERC Grants

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Call for proposal

(opens in new window) ERC-2024-STG

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Host institution

THE UNIVERSITY OF EXETER
Net EU contribution
€ 1 499 979,00
Address
THE QUEEN'S DRIVE NORTHCOTE HOUSE
EX4 4QJ Exeter
United Kingdom
Region
South West (England) Devon Devon CC
Activity type
Higher or Secondary Education Establishments
Links
Total cost
€ 1 499 979,00

Beneficiaries (1)