HUGERA (Human Genomics without Racism) is an interdisciplinary project funded by the European Research Council (ERC Horizon Programme) between 2025 and 2029.
We aim to develop conceptual tools to support ethically sound human genomics research.
These tools will offer key information for:
- identifying sources of biases in human genomics
- designing ethical recommendations and safeguards against these biases
- generating insights into new scientific tools and science communication
HUGERA is born out of the increasing, high-stakes role of human genomics in society.
Human genetic differences are perceived as the key to personalized medicine, care, and the future of biotechnology.
Alongside these promises, scientists increasingly worry about the dangers and risks of studying human differences. Until the early 20th century, this research area employed empirically flawed methodologies driven by racism, biases, and unethical conduct.
Today, many scientists work hard to ensure history is not repeated. How can we fulfil the promises of human genomics without falling into those harmful practices?
HUGERA brings together geneticists, philosophers, and social scientists to address this question.
The project has three phases.
- Phase 1: We develop an epistemological account of human genomics research, characterizing the key steps, assumptions, and practices of this research.
- Phase 2: We characterize the ethical risks that scientists and other stakeholders identify in those different steps, assumptions, and practices. This phase involves a mixed-methods approach, including interviews and ethical analysis from philosophy.
- Phase 3: We create a systematic classification of risks that arise at different stages of human genetic variation research. This will enable us to identify the most ethically sensitive aspects of that research and what can be done to safeguard them. These safeguards and recommendations will be available to scientists and contribute to the goal of ethically sound human genomics.
Throughout its phases, HUGERA will contribute to important philosophical themes. For instance, we will examine how knowledge is produced and justified in value-laden contexts.
This theory integrates philosophical discussions in data-centric biology, values in science, and race theory. We enrich these discussions with a long and insightful literature on human genetic variation from anthropology, sociology, and STS.
Do you want to know more about the project and collaborate with us? Please write to HUGERAProject at gmail.com